[This Transcript is Unedited]

Department of Health and Human Services

National Committee on Vital and Health Statistics

February 24, 2015

National Center for Health Statistics
3311 Toledo Road
Hyattsville, MD 20782


P R O C E E D I N G S (9:10 a.m.)

Agenda Item: Welcome

MR. SCANLON: Let’s get started. We have several of the members on the phone, as well as the folks around the table. So a little bit about the agenda, and then we’ll get into the reports from HHS.

First I’m going to talk a little bit about — well, first we’ll do introductions, and we’re very pleased to have two new members, Dave Ross and Denise Love. They’ve been nominated several times and we’re very happy to have them across the finish line here, but we’re very happy that they could join the Committee. Both have been appointed for four-year terms by the Secretary.

So we’ll do introductions. The agenda is, as you see, we’re going to have reports from the Department on various areas that are of interest to the committee and where the committee has worked already. We will have a report from the Population Health Subcommittee, in preparation for an action tomorrow morning. Bruce and Bill Stead will lead that discussion.

We’ll have at 1 o’clock the report from our Standards Committee, and particularly the creation of the ACA Review Committee, which we now have in place, and the Full Committee is acting as that Review Committee that was required by the Affordable Care Act.

Remember we discussed how are we looking at monitoring the impact of ACA and health systems change, how are we doing this through indicators and measures and so on. So we’re going to have the report from Suzie Bebee-Burke of my office this afternoon, and she is going to describe the framework that we have for — this will develop by looking at what areas of health and health care would you want to see and have impacted by the Affordable Care Act and other health systems change? So we’re presenting it more as a framework, not that you have to do it that way. But at any rate, Susie will give us an overview of that.

And then we’ll have the discussed work plans from Standards, Privacy, and Confidentiality, and so on. And then we’ll have our usual public comment from anyone who wants to raise any issues.

We’ll adjourn at 5:30. I think we’re still on schedule. Tomorrow morning we’ll start at 8 o’clock and we’ll begin with action on the Population Health Report and Recommendations. We will have Charlie Rothwell here tomorrow to update us on the developments at the National Center for Health Statistics. We’ve asked, again, to show how we’re monitoring the impact of Health Reform, we’ve asked Robin Cohen from the National Center for Health Statistics to come over and talk about — you’ll remember that we were using administrative data, surveys and research generally, to look at the ACA, the impact of ACA, and we’ve made a number of enhancements to some of our national surveys, and Robin Cohen will be talking about some of the additions we’ve made to the Health Interview Survey and a program of early release. It’s quarterly data on a six-month basis, which has been very helpful to HHS.

And then we’ll have a report from the Workgroup on Data Access, Vickie and Damon, and then we’ll wrap up. Then we will open up the Workgroup on Data Access and Use for HHS.

So that is the agenda. I think we’re still pretty much, no changes so far. But I think what we would do is start now with introductions.

MS. JACKSON: A point of clarification about action for this meeting. It would be an action on the Population Summary Report, which does not contain recommendations. It’s a summary of the roundtable that was conducted last summer, and we are thinking since that was submitted in the book without recommendations we could almost take the action on that this afternoon and then free up time tomorrow for more discussions. So that’s the clarification on the report item.

MR. SCANLON: So why don’t we do introductions, and we’ll ask Dave and Denise to — most of the folks will go around and they’ll indicate they don’t have any conflicts, but would you do a little intro about your background as well, for the folks who don’t know you as well?

So let me start. I’m Jim Scanlon. I’m acting as the chair while the Secretary picks a new chairman. She has the package now before her. We were fortunate that two of the members of the Committee were willing to be considered for chair. So that is now in the hands of the Secretary, and hopefully we’ll get word pretty soon. I was hoping we’d even have word for today, but it’s taking a little longer.

So I’m the staff director of the Full Committee.

MS. JACKSON: Debbie Jackson, acting executive secretary for the Committee.

MS. GOSS: Alix Goss from the Pennsylvania eHealth Partnership Authority, a member of the Full Committee and member of the Standards Subcommittee, no conflicts.

MS. KLOSS: Linda Kloss, Health Information Management Consultant, member of the Full Committee, co-chair of the Privacy, Confidentiality, and Security Subcommittee, and member of the Standards Subcommittee, and no conflicts.

DR. CORNELIUS: Lee Cornelius, University of Maryland School of Social Work, member of the Full Committee and member of the Population Health Subcommittee, no conflicts.

DR. COHEN: Bruce Cohen, Massachusetts Department of Public Health, member of the Full Committee, co-chair of the Population Health Subcommittee, member of the Data Workgroup, no conflicts.

DR. STEAD: Bill Stead, Vanderbilt University, member of the Full Committee, co-chair of Population Health, no conflicts.

MR. SOONTHORNSIMA: Ob Soonthornsima, independent consultant, member of the Full Committee, and Subcommittee on Standards, no conflicts.

DR. SUAREZ: Good morning, everybody. I’m Walter Suarez with Kaiser Permanente. I’m a member of the Full Committee, co-chair of the Standards Subcommittee, and no conflicts.

MS. JACKSON: And we have two on the phone.

MR. BURKE: Good morning, it’s Jack Burke, Harvard Pilgrim Health Care, member of the Full Committee, member of the Population and Privacy, Security, and Confidentiality committees. No conflicts.

DR. CHANDERRAJ: Raj Chanderraj, member of the Full Committee, member of the Standards Subcommittee, no conflicts.

DR. WALKER: Jim Walker, Cerner Corporation, member of the Full Committee, no conflicts.

MS. JACKSON: Thank you. Thanks so much.

MR. SCANLON: Okay, great. Dave and Denise, would you introduce yourselves? We’re very happy to have you.

MR. ROSS: Yes, hi, I’m Dave Ross, now a new member of the Full Committee, not yet a member of subcommittees. That will change soon, I know. I have several different professional capacities. I’m not aware that I have any conflicts. I am vice president of the Taskforce for Global Health, which is a 501(c)(3) nonprofit affiliated with Emory University and also am director of the Public Health Informatics Institute which is a program of the Taskforce for Global Health.

MS. LOVE: I’m Denise Love, member of the Full Committee now, and no subcommittees to date. I am the executive director of the National Association of Health Data Organizations, also known as NAHDO, and so in that capacity I work with states and private agencies building their health care data systems and programs and I am cofounder and co-leader of the All Payer Claims Database Council. So that is my professional capacity and now a member of the Full Committee.

MR. SCANLON: Shall we introduce the audience?

(Introductions from audience)

MS. JACKSON: Is there anyone else on the phone?

DR. SAVAGE: This is Lucia Savage at ONC. I’m one of your morning presenters.

DR. LINCOLN: Dr. Mike Lincoln from the University of Utah and Department of Veterans Affairs, Director of Standards and Interoperability for VA.

Agenda Item: Updates from the Department

MR. SCANLON: Okay, let’s move into the agenda. So let me start with a report from our meeting, developments of our meeting in December.

So on the personnel front at HHS let me just update a few things. As I think many of you know now, we actually have a Surgeon General; Dr. Vivek Murthy was nominated by the President and it took a while, but he was actually confirmed back in December. So he is now on board. He’s already been traveling and giving some talks and so on. So we’re happy to have him aboard as well.

You remember that Karen DeSalvo, who was the head of the Office of the National Coordinator is now the acting assistant secretary for health. So she is wearing a couple of hats now. I think Karen is actually going over to Liberia to visit some of our Ebola prevention and treatment facilities and some of our own public health commission corp folks who are there as well.

Jodi will update us on the other activities at the Office of the National Coordinator.

During the week we learned that our Deputy Secretary, Bill Corr, is leaving at the end of March. He’s been here for six years. So he’s been here for quite a while. So we’ll see who will be acting there and who might be nominated there as well.

I think you’ve all heard that Marilyn Tavenner, who is the head of CMS is stepping down I think at the end of March as well, and Sean Cavanaugh I think will be acting administrator and Patrick Conway — I think many of you know Patrick — will be moving up as acting deputy director. So we’re moving a lot of folks around.

I might just say that the Secretary is very much a sort of — although she wouldn’t call herself a data person, she’s very much interested in, when issues are presented to her and she has to make a decision or plan, she’s very much interested in the quantitative side of it in terms of, so, how big is this problem? What do you want me to do? What kind of an impact are we expected to have, that sort of thing. So it’s almost that kind of thinking about, you know, how a population health kind of an approach implicitly.

So let me go now into our area of programs and policy and where we are with the budget and then where we are with some of our data strategy initiatives. So we updated in the fall our strategic plan. It covers the period 2014 through 2018. It’s on our HHS website.

There are basically four overall goals and 21 objectives in those four goals, and as has been the tradition for the strategic plan, we try to have measures and metrics for each of those objectives so we can at least see where we’re heading; are we making progress? And when we have discussions about where we are, what is the reason why we’re making progress or we’re not making progress?

We also released a revision of our open government plan, and my office in HHS, the Planning and Evaluation Office, it’s our job to help the leadership track these initiatives, and we’ve created a strategic planning system where plans relating to most of our major initiatives, we try to have objectives and measures. We have them all on one system, at least the high visibility plans. And so the leadership can review these periodically and see where we are in one place.

With reference to the Affordable Care Act, you saw we just finished our second open enrollment. It’s referred to as OE2. Not QE2; it’s OE2.


With about 11.4 million people either having renewed their insurance through the marketplace or signed up anew. So we’re sort of doing a postmortem now about who is it that still is uninsured. You know, what’s the profile and what are the characteristics there? And then in the fall, we’ll have the next open enrollment period as well.

In addition to the strategic plan and the Affordable Care Act, all of the other activities in health and public health and human services continue obviously, and there are a number of initiatives that began last fall and even begun more recently that we’re pressing forward with, and just let me mention a few of those, and I will mention again that when we have plans or initiatives like these, we typically like to have some objectives and then some quantitative metrics or measures about how are we doing so we can evaluate where we are.

So we had — you’ll all remember the Ebola crisis in the fall and over the winter. Fortunately we got a fairly big budget amount to help prevent and treat Ebola, including research and vaccines as well, and the President’s budget for 2016 requests additional funding as well. I’ll talk a little bit about that.

We’ve also had a number of requests and the department has now developed an initiative to prevent the misuse and abuse and morbidity and mortality associated with that for opioid misuse. So we will be having a rollout of the specific parts of that, but the budget that the President sent up to the Hill includes some initiatives and budget investments there as well.

And also we’re looking at delivery system reform, which is an area that the committee has been interested in as well, and data and information sharing is a big part of delivery system reform. So even with insurance reform obviously, hopefully more and more people would become insured. That doesn’t necessarily change the delivery system. So there’s still issues of quality. There are issues of care coordination, of accountability and population health management. So there’s now an effort to try to move the levers, policy levers that HHS has, to support some of those changes, and again, we have objectives and we have metrics in each of those areas as well that we’ll try to move forward with.

And then we continue with traditional public health areas: tobacco control, we’re implementing all of the FDA authority relating to tobacco control; HIV prevention; hospital-acquired infections; reducing disparities. This June will be the 30th anniversary of the Secretary’s Report. It was Secretary Heckler at that time of the initial report on disparities, and that led to a number of activities within HHS as well.

There will be some sort of a celebration of the report and update. We’re still working out what that will be.

This March is the five-year anniversary of the Affordable Care Act. So there will be some accomplishments there as well.

We continue to work on the National Quality Strategy and the National Prevention Strategy, global health, a number of other issues on the human services side, early childhood health development and education, and there continues to be great interest in Alzheimer’s and autism, although they are very tough areas in terms of what exactly besides services what do we do exactly.

So again, when we have these high-visibility plans and initiatives, in terms of leadership and managing these initiatives, we try to have objectives as well as metrics so we can review these.

Let me turn to budget quickly. So we do have an actual budget for the rest of fiscal year 2015, and I’m pleased to say that for the most part we have most of our major data, data collection systems or general purpose health statistics systems, funded. So we’ll be able to continue some of the investments we made in the health interview survey and the other surveys to monitor health reform.

I might mention with respect to the Affordable Care Act, so how do you evaluate and monitor the impact of such a — an initiative has so many different parts, and I think what we tried to do on the data side is to look at the administrative data, which would be the enrollment data now from the marketplaces, as well as claims data. Our surveys, where we have made a number of additions to our surveys to be able to monitor ACA, and again, it’s not just the insurance, whether insurance coverage goes up or down; it’s access to care, quality of care, preventive services, population health, and so on. So it’s more than just affordability and so on. It’s more than just getting people covered.

And then there’s sort of individual research and evaluation of projects for very specific parts of health reform.

We just published, I think, again the results of the Open Enrollment 2, based on the application or the administrative data that’s used in the marketplace, and we’re trying to do more and more with analyzing that data as well.

I mentioned previously that we have at the Humphrey Building now at ASPE, we have created an NCHS research data center. As pretty a place as Hyattsville is most of the folks from HHS and Congressional Budget Office and others, they really want a place closer to their offices. So we’ve created one of the secure NCHS research data centers at the Humphrey Building.

Let me see, talk a little bit about our data strategy, and then I’m going to — just a little bit about a couple of projects that I think our speakers will note as well.

So two years ago the Data Council was asked by the leadership to sort of look at our portfolio of data investments, data collection mostly, not the IT side of it, and to see whether there were ways we could improve these activities; are there ways to get the data faster without sacrificing quality and accuracy? Could we make better use of technology? Are we missing major data gaps and so on which we need to direct attention to and so on?

And then is there — the theme clearly came through with how can we bring — looking forward, how can we bring what we hope will be a steady stream of high quality data from the administrative side of health and health care, from public health surveillance, from electronic health records, and from our own surveys? How can we begin to orient this whole stream of data to improve health and health care so that when we make a decision about any one of them we are not precluding coordination and integration later, so that as we moving along we’re sort of helping, each is sort of benefiting from developments in the other.

So that data integration theme, that alignment theme, which the committee here is fully supportive of, even more generally, that’s been the theme for our data collection and strategy planning within HHS. And then within each of those areas, we’ve looked at what our priority areas are: can we make investments; obviously the ability to monitor the Affordable Care Act’s impact was a big part of the data gaps. But there are other state and local data, race/ethnicity data, vulnerable populations data, and so on. That’s always been a big part of the goals in the data gaps as well.

In terms of the technology, we looked at what was available. We looked at electronic health records and where we might benefit from our health care surveys and research from the growing number of practices and hospitals with electronic health records, and we created a number of pilot projects where, for example, the survey of physicians’ offices at NCHS; the National Ambulatory Medical Care Survey is carrying out some pilots where they are able to use electronic health record information to get information from hospitals and from doctors’ offices.

So again we’re not — until EHRs are ubiquitous and producing data that’s standardized and high quality, we’re still in the developmental stage, but we’re clearly moving along that path.

Administrative data, as you know, CMS has always had a very enlightened approach to making the claims data available. It goes back a long time, and it’s probably served the claims data for some of the most insightful analyses we have about health care variation and cost and quality across the United States, and CMS, as we’ll hear this morning, is continuing on that effort.

Surveys, again, we looked at how can we collect data faster. So we made a couple of investments in trying some web-based surveys as well as Skype-based interviews. We’ve always done telephone interview surveys and so on. And we’re sort of getting mixed results from some of these, and the problem seems to be the representativeness of these and the response rates with some of these population. You all know you can buy — there are commercial surveys available that will do web surveys and telephone surveys for you quickly and cheaper than we probably do in our federal surveys, but they have very low response rates, 5 percent or 9 percent. And you can weight everything up, of course, but what does that mean if you basically violated the very foundation for statistical inference? But they provide clues and so on, so they’re always good to look at.

So there’s a real problem we’re having now with response rates. Federal surveys do a lot better, but there clearly is a decline in response rates for various reasons. So we’re trying to look at that and see how — we’re probably actually going to have a workshop under the Data Council’s auspices looking at response rates, not just to confirm that they’re declining everywhere, but what are people doing in terms of methodology and other approaches to kind of see if there’s some way we could improve those as well.

I did want to mention that we have funded a study at the Institute of Medicine to look at the socioeconomic status and health care quality, and in fact there was a look at — I think this was part of the Affordable Care Act — a look at is there even a way to risk-adjust health care payment for SES, which is a difficult area. That’s not the kind of information you’ll find on the claims, for example. So there is a lot of conceptualization that has to be thought about here.

And I don’t want to steal Jodi’s thunder, but she’s going to talk a little bit about the proposed draft interoperability roadmap that I think we all agree will be a key to really delivering system reform and improved health. All these things rely on the ability to exchange, to find, to have, to find, and to exchange reliable and up-to-date health information, and all of the other payment schemes and everything else, without that it’s hard to have coordinated care and it’s hard to coordinate among providers and get information to patients without having that technology a little further developed.

So I think I’m going to stop there, Debbie, and we can take a couple of quick questions, and then we’ll go on.

DR. COHEN: So for Denise and Dave, the tradition has grown up if you have questions or comments to raise your tent. It seems to work fairly effectively.

Jim, a couple quick observations. The research data center downtown, will that be only for internal users, or will it be available for external users?

MR. SCANLON: Just federal. At this point it’s for federal.

DR. COHEN: So, you know, the research data center has enormous potential to give access to confidential data. Actually on one of my projects with CDC, we’re storing data in that protected environment. It’s been developed by NCHS to focus really on access to NCHS survey data, but in our discussions about providing access to data in general, I would really like us to think more expansively about how to give outside researchers access to a variety of federal public health data through an expanded RDC approach. I think it has enormous potential that hasn’t been explored. The constraints now that are focused really on NCHS data make it difficult for some outsiders to use other datasets in that environment, but I think that would be a really fruitful area for recommendations for the national committee as we talk about data access.

A second comment around the Data Council. You know, it would be great if I think the national committee had more advanced noticed around Data Council activities so we might be able to dial in and participate. The workshop that they’re going to be having around survey methods is certainly of interest I think to several members here and is consistent with some of the work we’re doing around population health around looking at data availability at the committee level.

MR. SCANLON: The thought there was it’s at a very early stage. We just got the funding for a workshop. So we’re well — we were anticipating that NCVHS members would be part of it as well.

DR. COHEN: Great. And then on a more personal note, the SES adjustment, that was the subject of my thesis 34 years ago, I think.


So I would love to find out more about that and see what’s happened since then.

MR. SCANLON: There are actually some projects that I think Denise is aware of where claims data — not from 30 years ago — where people have matched — it’s very interesting actually. They’ve matched SES data from the Census to the track; there’s a block even in the claims data. So it’s not individual. So it’s still correlational. But they’ve found some good studies.

But exactly, that’s a tough one. I don’t think — oh, I failed to mention: this is fascinating for those of you in public health and policy. The budget that the President sent up in January actually contains money to do something like the National RAND Health Insurance Experiment again. Remember that, in the late 1970s and 1980s? It was an unbelievably fruitful study, but RAND, this was a contract from ASPE, before my time, but we had a lot more money, but RAND got a contract and they literally set up an insurance company, and they varied the benefit. It was basically copayment and cost sharing. They varied the approach. It was a prospective study. But they literally set up an insurance company, and the group plan I think was — Puget Sound, of course; they were doing all the research back then.

But they later, that’s where all the findings now that economists still use relating to cost-sharing, what happens when you have this, came from that study. So the idea has come up: why don’t we look at — so we actually have funding that would come to HHS to do the groundwork, which is just fascinating. Things just come around again.

DR. STEAD: I wonder if there is a better way to align NCVHS and the Data Council. For example, we sit in these discussions and we lay out our work plans. Largely we do not have staff to help us get those plans done. The Data Council and other parts are all doing the same thing, and they get funding, and they — no, but if they get that funding, and then NCVHS members can participate, all of which is fine, but imagine what if that workshop was actually part of the NCVHS work plan and part of the Data Council work plan, and the one set of funding and the staff somehow met both targets.

So I know we’ve got crosstalk, but I just wonder if there’s a way to harmonize that in a way that would help with some of both the priority constraints and the staffing constraints.

MR. SCANLON: For the workshop, where we have enough — we have to do a research proposal at HHS just like everywhere else, and we never know if they’ll get funded or not. So on the subject we’re just starting, but there’s no reason — I think for workshops and issues like that, we always think of getting the NCVHS involved as well. It does become a public event then. So some can depart from what the original thought might have been. But I think for the surveys, the workshop, we were thinking it would be public anyway. But no, it’s a good idea. We’ll keep that in mind.

I think we’re ready now, Shana? Shana Olshan from CMS. Would you introduce yourself, Shana?

MS. OLSHAN: Sure, good morning. My name is Shana Olshan, and I am the director of the newly-formed National Standards Group. This group replaces what had been the Administrative Simplification Group in the former office of E-Health Standards and Services.

So there have been a lot of changes going on, and I also want to correct some of the things you just said about the changes at CMS. Marilyn Tavenner will be leaving at the end of this month, so this is her last week, and Andy Slavitt who has been the principal deputy administrator will be the acting administrator, and Patrick Conway will be the acting principal deputy administrator in addition to the other hats he already has as director of the Center for Clinical Standards and Quality and the Center for Medicare and Medicaid Innovation. So he’s going to have a full plate. So lots of changes at CMS.

But before I give you the details of the updates of changes at CMS and the work of the new National Standards Group, I would like Elizabeth Holland to provide you with an update on the HITECH EHR incentive program, and she’s joining us by phone from CMS. So as most of you know, Elizabeth works in our Center for Clinical Standards and Quality and directs the HITECH program from the CMS side of the house.

So, Elizabeth, assuming you’re on the phone, the floor is yours.

MS. HOLLAND: Thank you, Shana. Can everyone hear me?

The Medicare and Medicaid Electronic Health Record Incentives Programs have invested more than $28 billion in health information technology through incentive payments to providers for either adopting, implementing, or upgrading to certify EHR technology under our Medicaid program or for meaningful use of certified EHR technology in either the Medicare or Medicaid program. As of December 2014, we had over 431 health care providers that have received at least one payment for their participation.

We are currently working on our proposed rule for stage three of meaningful use and that is expected to be released in March. We are limiting the scope of this stage three rule to the requirements and criteria for meaningful use in 2017 and subsequent years. We did recently announce that we will be doing a separate proposed rule for 2015 to make modifications to meaningful use for 2015 through 2017. So this separate rule will come out after the stage three rule, and we are hoping that it will be responsive to provider concerns about software implementation, information exchange readiness, and other concerns.

Some of the proposals that we are currently considering for inclusion in that rule include realigning the hospital reporting periods from the fiscal year to the calendar year to give them more time to get their 2014 software incorporated into their workflow and to better align with other CMS quality programs. We’re also hoping to modify other aspects of the program to match some of our long-term goals to reduce flexibility and lessen providers’ reporting burden, and the big one we are doing is shortening the EHR reporting period in 2015 so it will not be the full year. It will be 90 days. So we do have to do an NPRM for this and a final rule and all get it out by probably September. So we are being very optimistic, but I believe we will get it done.

Are there any questions?

MS. OLSHAN: I don’t see any, Elizabeth. Thank you, Elizabeth.

So onto what’s going on at CMS, you may remember that in December, Todd Lawson described the formation of a new office in CMS, the Office of Enterprise Data and Analytics. The realignments at CMS continued into December, and in mid-December another new office was created, and it’s called the Office of Enterprise Information, or OEI. OEI is not simply a new name for the Office of Enterprise Management, but it has subsumed most of the responsibilities of that office.

The new office is designed to improve efficiencies in CMS and to better align the chief information officer functions in a single area. The CMS CIO, Dave Nelson, leads the Office of Enterprise Information.

There are five groups within OEI, but of those five there are two that are directly relevant to the work of this committee: the National Standards Group and the Information Security and Privacy Group. Emery Csulak is the new CMS chief information security officer. He’s also the director of the Information Security and Privacy Group. So if you see his name anywhere, that’s why. So finally security and privacy are in the same shop within CMS. So I think that’s a really good thing.

My group, the National Standards Group, is charged with the adoption, implementation, and enforcement of a full range of administrative simplification standards such as transactions, code sets, identifiers, and operating rules, as authorized under HIPAA and the ACA. So I have worked at CMS since 1993 in a variety of capacities. Most recently I was the deputy group director of the provider communications group in the Center for Medicare. In that role I worked directly on the Medicare fee-for-service ICD-10 implementation efforts, and I also served as the Medicare fee-for-service what we call business owner of the eligibility transaction and admittance advice. So I’ve been to X12. I’ve done different things like that.

So even though I do have some past experience in much of the work of the National Standards Group, I’m still learning the ropes. So my hope is that my fresh perspective will assist in our group’s efforts to adopt, implement, and enforce the administrative simplification requirements in a way that truly improves efficiencies in the health care system with the ultimate goal of facilitating improvement in health outcomes.

One of the priorities of NSG is revisiting the many administrative simplification initiatives, as well as all of the NCVHS recommendations since 2012. These reviews may slow us down initially, but my goal is that they will allow us to improve the way we do business and down the road a bit reduce the time it takes from NCVHS recommendations to CMS action.

The areas getting the closest review right now are the health plan identifier, HPID, and certification of compliance. So regarding HPID, as Todd reminded you in December, HHS issued enforcement discretion to not enforce the adoption of HPID. This discretion allows for a full review of this committee’s recommendations to mitigate the confusion about the HPID among the health care industry and consider appropriate next steps in that regard, and that review is ongoing.

Certification of compliance is also a top issue under review in NSG. This is one area that I need to understand more thoroughly before we proceed with further rulemaking. I also look forward to hearing what CAQH CORE may recommend to the Standards Subcommittee and any recommendations that may be put forward by the new review committee later this year.

So moving toward a successful industry implementation of ICD-10 on October 1 of this year has been what has consumed the largest percentage of my time and that of my group. CMS and HHS are ready for the October 1 implementation and continue to march towards that date, and as a reminder, it’s only 218 days away. I have a clock in my office that I change manually every day.

So for the first time in history, Medicare fee-for-service conducted end-to-end testing a little under a month ago with submitters to determine readiness for ICD-10. This was a big deal. We had never done anything like this. Our shorthand for this testing we like to use is submit to remit. So this means the test claims are accepted into the claims processing system, they get processed, and remittance advices are produced.

So we had said publicly that we planned to issue the results of that testing about a month after the testing is completed. So the plan is to release the results later this week, and if those results occur during this meeting, I will make sure that the committee chairs have the information to pass along to the rest of you.

Two more rounds of Medicare end-to-end testing will occur in April and July. Participants for the April testing have already been selected. However the opportunity for submitters to volunteer to participate in the July testing will begin sometime next month.

All told, for the three rounds of end-to-end testing, Medicare will allow 2,550 unique testers to participate.

The November acknowledgement testing results, we had a special testing week in November, were released in late December. While claims were rejected, they were rejected due to problems on the submitter’s end, not CMS. Our system looked great. The Medicare administrative contractors worked with each submitter to correct any errors that they may have had, and the acceptance rate improved over the course of the testing week.

While submitters can conduct acknowledgement testing at any time with Medicare, there will be two more focused acknowledgement testing weeks. The next one is next week, the first week in March, and the second one will be during the first week in June, and no registration is required to participate in that testing.

We continue to brief Congress on ICD-10 and the importance of moving forward with the current implementation date. As many of you may be aware, two weeks ago on February 11, the House Energy and Commerce Committee Subcommittee on Health held a hearing on ICD-10. Of the seven panel members testifying, only one recommended a delay. The committee chair, Representative Pitts, was also supportive of keeping the October 1, 2015 date.

There was a recent GAO report publicly released on February 6 called CMS’s efforts to prepare for the new version of the disease and procedure codes. This report provides an excellent summary of all the steps that CMS has taken to prepare for ICD-10, and I do have a copy here if anyone would like to review it.

The report’s requesters, Senators Hatch and Wyden, stated that they are, quote, confident CMS is prepared to handle the upcoming move to ICD-10 coding system. In fact, Senator Wyden said, and I quote, CMS has taken unprecedented actions to help providers prepare for this change.

So I look forward to reporting to you all at future meetings that there was no delay in the implementation of ICD-10 and that the transition to the new code set was a success. I’m excited about my new role here at NSG and working together with all of you at NCVHS.

With that, I conclude my remarks, and if any of you have any questions, I’ll do my best to respond, but remember I am still learning the ropes.

MS. LOVE: One frequent question that I get at my association is does there exist a dual-coded dataset for testing on the public health side so they can run some of their measures through —

MS. OLSHAN: We do not have that, but we have been looking into how we might be able to work with others to try to create that, but we do not have that right now.

MS. KLOSS: Thank you for the very encouraging case of moving forward. It’s great to have a positive report.

I keep hearing persistent questions about readiness of state Medicaid agencies. Could you comment on that?

MS. OLSHAN: Very briefly, we are working with all the state Medicaid agencies and they are all required to complete testing and to submit contingency plans to us if there are any issues. All of the states have reported to us that they will be able to do what they need to do on October 1, but we continue to follow up with them to trust yet verify. So we’re optimistic that things will work, or if their systems are not ready, there will be contingency plans that will be adequate workarounds.

DR. SUAREZ: I wonder if you can comment on the status of some of the pending regulations around things like compliance certification or any plans for the plan ID, some of the things that we’ve been working on or have worked on in the past several months.

MS. OLSHAN: As I mention in my remarks, the health plan ID and certification of compliance are sort of our top priorities right, in addition to ICD-10, to be reviewing everything. I have charged the group with reviewing everything with fresh eyes. I want to make sure I really understand everything before we proceed with any further rulemaking, but we do understand that there is a pressing need to move forward, but I want to make sure that we do it in a thoughtful educated way.

MR. SCANLON: Thank you, Shana. Very helpful, and welcome aboard.

We moved up the agenda slightly. Jodi, Jodi Daniel, is going to go second here. Jodi is the director of the Office of Policy in the ONC.

MS. DANIEL: Thank you. It’s great to be here. It’s been a while since I’ve been giving updates from ONC at NCVHS. So it’s nice to be back.

First, I just wanted to talk a little bit about our staffing. Jim had already started mentioning Karen DeSalvo’s new role as acting assistant secretary for health, and in fact she is indeed in Africa right now. She just went there this week to check on the clinics that have been set up there to address the Ebola crisis in West Africa. She is still very much engaged in the work of ONC. She gets regular updates and is driving a lot of the work that we’re doing currently.

That said, she also has put in place some new staff to help support our immediate office in the management of our work. Of course, Lisa Lewis is acting in her absence right now and serves as the chief operating officer. We also have Jon White who is the acting deputy national coordinator and also serves as a co-chair of our health IT standards committee, and we have recently brought on board Michael McCoy who is the chief health information officer at ONC and will be helping from the clinical perspective with kind of all of what we’re doing, our regulations, our roadmap, interoperability, et cetera.

So there’s a lot going on in ONC right now. We just put out a whole bunch of new documents for folks to chew on and react to, and we’re really trying to set the pace for health IT and ONC and the federal government’s role sort of in the next five to ten years. So I’m going to talk through a bunch of those.

First, I’m going to start with rulemaking to piggyback on the CMS conversation, and I do have more in here than I’ll probably talk to, but I wanted to give some context. So I have our 2014 activities that ONC and CMS have done jointly, as Elizabeth Holland had mentioned, we are anticipating our — CMS is anticipating the meaningful use stage three NPRM coming out in the near future. We will be putting out our 2015 edition standard certification criteria proposed rule aligned with the CMS rule, and we’re working very closely with CMS to make sure that the rules are well aligned and that we will be putting them out concurrently. So stay tuned. We will look forward to feedback on both of those regulations.

Okay, so onto our federal advisory committees. As most of you know, although we have new people, so I will explain a bit; we have two ONC federal advisory committees: the Health IT Policy Committee and Health IT Standards Committee. They have been put in place since the HITECH Act in 2009. They have been very active on every issue that we have dealt with at ONC and many issues that the federal government has dealt with on health IT and interoperability.

We have recently in the last six or eight months reconstituted our advisory committees and have really kind of reshifted the work they’re doing to better align with some of our new direction, which I’ll talk about when we talk about our strategic plan and our interoperability roadmap.

So just to give you a sense of the work they’re doing and their timelines, just as it relates to NCVHS, and we have been having better coordination with NCVHS to make sure that we understand what’s going on here and that the staff of NCVHS knows what’s going on at the Policy and Standards Committee. We’ve really been focusing the committee on a lot of the activities that ONC has been engaged in lately to get their feedback.

So we have three things I’ll be talking about, our strategic plan, our federal health IT strategic plan, our interoperability roadmap, and our standards advisory. We have been asking for input from our policy and standards committee on all three of those documents. Some was input that we used to weight as input into our interoperability roadmap, and now we’re having them actually look at the documents we’ve come out with and give us some feedback on what we’ve put out and proposed forms that we can have a better product at the end when we finalize the rules. So this gives you a little bit of a timeline here about when the committees are working on which documents.

We also will be having a hearing of our advanced health models workgroup on May 13 to start looking at the use of data beyond the clinical setting to look at different kinds of models of health data and health information that is important for looking at the new payment models, delivery system reform, et cetera.

So this was a committee update that I thought would be helpful that we had from our last committee meeting. This talks a lot about the Standards Committee. So we recently had data provenance recommendations that were approved by our health IT standards committee and transmitted to the national coordinator, and all of this stuff is available online and we can make it available to the committee if anybody is interested in these documents. We’ve recently formed a health IT standards committee S&I taskforce; S&I is standards and interoperability framework. It’s a collaborative effort that we manage at ONC to get input on emerging standards or areas where we need standards harmonization.

There will be a hearing this Friday, February 27, for that taskforce, and we are working toward recommendations at the March 18 health IT standards committee meeting. As I mentioned in the prior slide, we will be having a lot of workgroups focusing on the interoperability roadmap and giving us feedback on that. It crosses a lot of the different work of both of our committees. So we will be getting a lot of diverse input on that as well.

Of course our regulations, both the standards and certification criteria regulations and the meaningful use regulations, will be discussed by our policy and standards committee and we will be getting recommendations on both of those regulations once we put those out.

And the last point I want to make on our committee is we do have openings right now. The policy committee, there are some nominations that are open that the general accountability office appoints, and those are due February 27; nominations are due February 27. And we are accepting nominations for the health IT standards committee through March 6. We have a number of openings on the standards committee and ONC makes those appointments. So if there are folks who are listening who are interested in participating, I encourage you to apply.

So I’m now going to go through the drumbeat of the different — the three big documents we’ve put out in the last month and a half I think or two months.

First I wanted to talk about the standards advisory. So what is this? Well, we have our standards regulations, and those govern certified EHR technology and what criteria are required for certified EHR technology, but what we wanted to do was provide a single public list of standards and implementation specifications for specific clinical health information technology interoperability purposes.

So what we put out is, it’s not a regulation. It’s just a guidance document that reflects that we believe are the best available standards for a particular purpose for a particular use, and this was as of December 2014. What our plan is is to update this annually. So as standards develop, as we get feedback from the community about things that are working, things that are not working, standards that are being used more frequently, we’ll be updating this list.

So the goal here is really to make this an iterative predictable process so everybody knows the timeline for when we put out this guidance and for folks to react, to give us feedback, to tell us that we got it wrong; the standard is not appropriate for a particular use; there is a better standard out there; the standard still needs work. Whatever it is, we would like to get feedback from the community as to getting this list right and having one point for folks to rely on when they’re trying to figure out what standards to use for their products.

So I tried to give links for all these things, too. So I have a link here if you want to look at it, and again, please give us feedback on this document, on the approach, and on the specific standards that we’ve put forward.

Okay, now onto our strategic plan. So we’ve had a strategic plan before. We had one that went from 2011 to 2015. So it was time to revise our strategic plan, and there were two good reasons to do this. One, the last one expired, but also the changes that have occurred since the HITECH Act have been so dramatic with respect to health IT interoperability. We’ve had a significant shift in the adoption of health IT, we have had a significant increase in the exchange of electronic health information, and we’re looking beyond just the meaningful use providers, the folks that are eligible for the CMS program. How can we look at the whole care continuum? How can we look at some of the providers that have not been covered by the incentives programs like long-term post-acute care providers and behavioral health providers, for example?

So what we did was we did a refresh. We worked with over 35 federal departments and agencies, and it is a federal plan. So it outlines the actions of the federal government with respect to health IT, not just ONC, but is a government plan. It is a national plan. It is what is the federal government doing on health IT?

We issued a draft plan in December. We did have a 60-day comment period. It is now closed. The plan is from 2015 to 2020, and our goal is to really reshape the strategic direction in light of the changes in health IT, the focus on delivery system reform, the focus on more consumer engagement on health and health care and the like, and how we can use different policy levers beyond just the one that we’ve been most reliant one, which is the CMS incentive program to promote adoption and exchange for health information.

So this is basically the sort of big overview of our strategic plan. We’re focusing on collection, sharing, and use of data, and we have five goals in place. First is to expand adoption of health IT; the second is to advance secure and interoperable health information exchange; the third is to strengthen health care delivery; the fourth is to advance the health and wellbeing of individuals and communities; and the fifth is to advance research, scientific knowledge, and innovation.

So this is — you can see there are some changes from our prior plan. We are trying to do a pivot from the $2 billion we got with a focus on grant making and trying to build infrastructure to really focusing on better care coordination across the care continuum. Hopefully that comes across in the plan. We are getting feedback through public comment as well as through advisory committees, and we will put out a final version of that plan in the coming months.

So here’s the details on this, and I do have a link to the strategic plan if folks want to find it and read it yourselves. So we’re saying that the plan will be published in late spring.

And last, I’m going to focus on the interoperability roadmap, and thank you, Jim, for teeing this up. This is actually one of the biggest pieces of work. We’ve spent a year trying to put this together. It’s been the primary priority of our office. It’s the thing that when Karen DeSalvo first came in the office just about a year ago, she wanted both to get a handle on and set direction for how we’re going to address interoperability. It’s what we hear about from Congress. It’s what we hear about from providers who are trying to implement meaningful use. We need to get — there are pockets of interoperability around the country, but how can we get to nationwide interoperability and more availability and access to data that’s necessary for health and health care.

So first I just want to start with our definition of interoperability is the ability of two or more systems to exchange health information and use the information once it’s received. So not just getting the information from point A to point B but to get it from point A to point B in a form that can be used by that recipient, which is really critical. Like I said, we have improved the exchange of information, but also thinking about the utility of that information and the mechanism and the form in which it is delivered.

The reason this is also so important is — and I think Jim mentioned this — that this is really the foundation for all the improvements we’re talking about in health and health care. It’s foundational for delivery system reform and it’s actually in the Secretary’s plan for delivery system reform to improve interoperability, because it’s one of the critical steps along the way. If we don’t have good data, we can’t measure value. We can’t improve outcomes. So this is one of the most critical things that we’ve put out so far.

So let me talk a little about the roadmap. I’m not going to get into too much detail. It is a very weighty document, and we do welcome input.

The way we have this set up is we have milestones for different years, a 3-, a 6-, and a 10-year milestone. So the 3-year milestone by 2017 is for nationwide ability to send, receive, find, and use a common clinical dataset. I think the roadmap actually says among providers and patients or individuals.

So how do we get this common core clinical dataset which is basically the dataset that we’ve put forward in our standard certification rules and that are used for meaningful use to make sure that it can be sent, received, found, and used among clinicians and for individuals.

By 2020, the 6-year milestone is to expand interoperable data user sophistication and scale; so bring in more players, not just the core providers and patients, but to increase the data users as well as the sophistication. I think we have more ubiquitous patient-generated health data being incorporated as part of that as well. And by 2024 we’re really looking at building toward a learning health system. So how do we make sure that information is available and accessible in a mechanism that it can support improvements in rapid learning and health information to support individual health and population health.

In doing that, we have five building blocks that support all of these milestones. The first is standards and technical functions; the second is certification, privacy and security; business, clinical, cultural, and regulatory environment; and governance. What we find with interoperability is that we know that it’s important to have the right standards and the right technical capabilities, but oftentimes the reason that we have challenges with information being interoperable is because of the policies and the incentives for sharing that information and the different practices that folks have that are inconsistent.

So in the roadmap — and I’m not going to go through all this; you have this in your slides — but we put out some critical near-term actions for each building block that we think we need to hit, particularly to just hit that first milestone, but that would support a learning health system. So I leave this to you all to take a look at.

We have gotten some really good feedback that we’ve hit some important key actions that we’ve framed this well, but we would be open to anybody, for the committee or anybody who’s listening’s input on how we can frame this better. To explain how this connects with our strategic plan, so if you look at our five goals, there is one that’s focusing on interoperability. So this is sort of building that out, and we see this roadmap not as a federal roadmap but as a national roadmap. There are some calls to action in here for different private stakeholders as well as for federal stakeholders, and we think that this needs to be a collaborative public and private effort to succeed at our goals for interoperability and to support a learning health system and delivery of system reform.

And my last point, I just want to give you the timing and of course our links. We just put this out January 30. The comments are accepted until April 3. So again we really hope for some good and rich comments. We do have our FACA, our advisory committee workgroups looking at this now with the expectation that they’ll be giving us feedback for us to incorporate as well. So if you’re interested in particular topics, you may want to look at our schedule. We can help connect you and help you figure out which are some meetings that may be helpful for you to listen in on.

And we will be coming up with a revised version and publishing, I believe, later this spring or early summer a final interoperability roadmap. We are already starting to drive towards some of the things that we have committed to doing in our roadmap and figuring out how best we can move forward while we’re still taking some feedback on some of the steps that we know we need to do now.

And that’s all I have. It looks like I have plenty of questions. So why don’t we open it up for questions?

MR. SCANLON: Thank you, Jodi. That’s very helpful. A lot of activity is under way.

Let’s see, I think, Bruce, you were first.

DR. COHEN: Great stuff. I recognize a lot of the concepts and ideas because they are certainly ones that we’re pursuing as well, and again, it’s the issue that came up somewhat around the Data Council. How can we align our activities to build on each other’s strengths and not having to reinvent the wheel? The issues around learning systems, our focus is on communities as a learning system. Some of the discussions around a standardized set of clinical measures, we’re talking about embedding those clinical measures into a broader concept of standardized measures, not only at the clinical level but for understanding population health, and your long-term goals around population health is certainly in the wheelhouse of what we’re trying to accomplish.

So how can — I mean, this is not a question that you can answer today, but I’d like to figure out a process so that all these activities that you’re developing in your strategic plan can be aligned with our work more seamlessly, and I don’t know whether we need some kind of ongoing communication, sharing a joint staff person, cross-fertilizing these committees with members or observers. Some of this is already happening informally, but I don’t want to — I think this is really exciting for ONC; it’s exciting for the nation, and I want to make sure that somehow we’re converging more explicitly.

MS. DANIEL: Sure. I think it is a really great and important point. I don’t necessarily have a roadmap for you right now, but so a couple of things. One, we’ve had more staff level conversations. We’ve started having regular conversations with the NCVHS staff to make sure that they know what we’re doing and we know what you guys are doing so that we’re not working — you know, we’re not tripping over each other and what we’re doing is actually complementary and helpful and we’re working towards similar goals.

I do think that the committees have some slightly different areas of expertise and approach, and I think we can figure out how we best leverage one versus the other. You know, off the cuff, this is just my initial thought is we’re — I would say our Policy and Standards Committee, we have so much to do right now that we’re probably focusing them more on the immediate on the shorter term and that there may be an opportunity to work with you all to think more about how do we bridge to that longer-term learning health system and are there things that need to be in place, you know, kind of earlier so that we can succeed at hitting those milestones rather than waiting to get to — you know, kind of walking before we can run. We might need to learn how to run while we’re walking at the same time.

And I think NCVHS has always done a great job of looking at that longer view and helping us to figure out where we need to be now to get there. So there may be some opportunities for us to work collaboratively so that we can have simultaneous work going on that’s complementary and helps us meet the entire 10-year vision.

MR. SCANLON: We’ve had, just quickly, Jodi will remember in the past, we’ve had members of this committee serve as liaison to probably the policy and the standards committee, I think, and we’ve had — so we could talk about that as well. I mean, there are different ways to coordinate, and one is the liaison. Another is sharing as we’re doing now. Within HHS we talk between this group and ONC fairly frequently.

The other thing is when you’re getting public comments, you have to — for a proposal or for a draft strategy, there are sort of deadlines that we have to meet, but for example if the committee is interested in the interoperability roadmap, which I think — there’s also the standards advisory — but we could, we’d have to find a way, but I think we could assemble more or less individual review and comments; we could assemble them, and then we’d need some deliberation to put together actual comments. But we’d have to do it between meetings almost, you know, in some cases.

MS. DANIEL: But it seems to me more on thinking, you know, if you look here, we started fleshing out some of the critical near-term actions for our building blocks. So we haven’t figured everything out, obviously. Things change very dramatically over time, and we haven’t necessarily scoped out a full implementation plan for the full 10 years. We’re starting to think about what do we need to do in the short term with understanding what the objectives and goals are for the longer term, and I do think that in not just in reviewing the roadmap but actually in helping us scope out what are some of the critical actions that might not be the near term but might be the next phase may actually be helpful, and I can talk with Erica Galvez who is our interoperability roadmap portfolio manager who can help us to think through — and we can talk with Jim and the team — to help think through where there might be some areas that we think are critically important and we need some advice on but that we haven’t really fleshed out and there’s some room to get your input.

MR. SOONTHORNSIMA: Thank you, Jodi. I think this is a very tough topic to cover in such a short period of time but I think you frame it very well. I’m glad you left this slide up.

My question is slightly different from Bruce in that as we look at all these policies and standards, one thing I can’t help think about is what’s actually happening in the real world? In other words, providers and payers are figuring out how to evolve the payment model, leveraging the new delivery model as you were alluding to, and clearly when we look at your slides you know that these standards are critical, the HIT standards, because that’s how you interact between systems and so forth in order to exchange data. That’s critical in enabling all these new payment models, the bundle payment, population health based payment.

The question I have is how, you know, when you look at the timeline and when you look at the adoption of some of these ACO or ACO-like payment, shared risk payment, and so forth, they are evolving quite rapidly, and there are so many variations out there depending on localities you look at. So the question is how can we evolve these models so that they reflect what’s actually happening in the real world, you know, especially when profit margins are being squeezed for the providers and payers? So they are looking for new ways to conduct business, and I’m not sure our standards, whether NCVHS or even ONC, whether we’re moving adequately. I’m not saying we’re not moving fast enough. It’s really tough work that you’re all doing. But are we able to adjust quickly and really looking at how applicable these things are to the models that are shifting, both delivery model and payment models.

MS. DANIEL: So I’m going to call your attention to the purple bar here, support of business, clinical, culture, and regulatory environments. We’re working very closely with a lot of our federal partners, CMS being one of the big ones, to figure out what are the different levers that can help support interoperability in different ways.

So how can we leverage different programs? You know, we’ve also talked with SAMHSA, the mental health substance abuse administration, to look at how can we advance the use of health IT and information exchange among behavioral health providers, for example, or with CMS on long-term post-acute care providers. So we’re looking at where there are different regulations, different guidance documents, different policy levers that we can align the goals of the program with the goals of interoperability, because they are overlapping, and so we have a dedicated staff that is trying to focus on the intersection points with the different programs so that when providers are trying to comply with ACO requirements and trying to figure out how to have health information exchange as well, that those are actually aligned, that those requirements are aligned, so that there aren’t, you know, I have to figure out this, I have to figure out that, but we’re trying to connect the dots and ensure that the incentives are there for both the program goals as well as for the underlying infrastructure to support those program goals.

You know, I think that — and I do believe that when there are greater incentives, both from the payers as well as from the federal entities that have an influence over health care payment and health care delivery, I think we will start seeing more of a shift, and we are seeing more of a shift, where there is a need for better access to data to be able to do the quality measures, the analytics, to support some of these changing payment models.

And so I think it’s a little bit of a chicken and egg issue. Like do you push the incentives before the data is really available, and that will help drive people to make that data available, or do we figure out how to get the pipes moving before we sort of change the incentives, and I think what we’re trying to do is do both, and I think that as the incentives shift people will see a need for the information more and find better ways to make that available and as we make more information available it will support advances in delivery system reform. So what we’re doing, and I don’t know if Shana has anything to add to this, but I think we’re trying to figure out how we can move both needles at the same time, because they’re so interrelated.

MS. GOSS: So my question, building on Ob’s commentary as well as Bruce’s, comes back to you actually, Jodi, and your thought about the long-term role that we can play with the committee. NCVHS has a long history related to the administrative simplification provisions, and I noted that the interoperability roadmap, which I have read and I practically sleep with under my pillow lately, that there is a carve out of the HIPAA transaction. It’s a very clinically focused document. And I realize we have to eat the elephant one bite at a time, but if we’re going to look to that longer horizon, we need to blend all the data coming out of the clinical experience for all the diversity of business purposes we have.

So it might be helpful if you could add some commentary on why did we carve out HIPAA at the beginning of the process if we’re trying to get an interoperability roadmap where the data needs to all flow from the point of care and be reused? I realize we have some chicken and the egg going on here, but it would be helpful if you could maybe offer some commentary on that.

MS. DANIEL: I don’t have a whole lot to add, and I do welcome comments on the roadmap. I mean, that’s exactly the kind of feedback we should get as to — and not just it would be helpful to include this in, but why, and how, and give us some real concrete assistance in thinking that through.

You know, this has actually been something we’ve struggled with for at least since HITECH. How do we think about the clinical data and the financial and administrative data? We focused mostly on the clinical data, one, because we didn’t have good standards for them. We have the HIPAA admin-simp transaction standards of course. So it was the area that was farther behind, and it was the area that was critical for health care providers to improve the care they were providing to their patients, et cetera, and not just for the financial and administrative support and efficiency, et cetera.

So honestly it’s been something that’s kind of moved back and forth. We’ve often thought that — and many of us have commented on the fact that it would be helpful to bring those two together and maybe we could actually, that there may be some efficiencies to be gained by bringing them together and we need to be thinking about the payment side of things as well as the clinical side of things.

I think you’re right. I think we’re focusing on where’s the biggest gap, what is kind of squarely within the mission of ONC, which is the electronic health record and the clinical side of things, but I think honestly I would welcome the comments on how we can think about them together and how we can make sure we’re not — you know, there’s only so much you can do at once.

MS. GOSS: I agree that there’s only so much we can do at once, but it seems like we’re doing a disservice to our boots on the ground folks and the technology vendors and industry partners that support them in delivering care if we’re not thinking about getting a good roadmap. I shouldn’t say a good roadmap. We should get a solid merging of the data in the roadmap if we’re starting out with a new initiative, and I realize it’s a — and the statutory limitations and what you have control over is definitely an influencer, but it seems to me like we do need to pause and think about the longer trajectory, try to fix this once, and that really takes the standards development organizations and aligning, and we’ve done work on this, as back as the late 1990s, because I did that work, and we have a basis on making it happen, and I think the time is right.

MS. DANIEL: Yes. Thank you for that feedback.

DR. CHANDERRAJ: This is Raj Chanderraj. I can’t hear anything after the main speaker or the questions. People are not speaking into the mike, I think, but I don’t know. There’s a lot of artifact on the line, too.

MR. SCANLON: Bill, I think you had a question and then Walter.

DR. STEAD: Yes, again, building on this theme, one of the things I don’t see in this is what I would call maybe cognitive interoperability. Electronic health records are helping us a lot at finding things when we’re looking for them in a targeted way, et cetera. We’re still losing the patient in the data, and that problem actually is getting worse as we do more interoperability and get more data, and so as we think about ways that NCVHS might look out ahead, should we be looking at the changes in professional practice, be they clinical or be they public health, that are needed to take advantage of the new technology and to what degree is being dealt with by the advanced models groups within ONC or to what degree is that an area that this committee should deal with?

MS. DANIEL: I probably have to think about it more and go back to folks, but I don’t think — I think the advanced health models workgroup at least starting out will be focusing more on the broader set of health information beyond sort of what we had originally been thinking of, which are the eligible providers and the eligible hospitals that are part of the EHR incentives program that Medicare and Medicaid oversees.

So I don’t think that is a focus. I’m going to have to go back and look at their work plan to see how much they’ve put on their work plan, but that may be an area of opportunity for NCVHS. So why don’t we plan to follow up? I could follow up with Jim and we can see if that’s an area of interest.

MR. SCANLON: And I think those — the committee here can sort of look at beyond the next immediate issues to sort of see where we’re heading. That would be appropriate to me, I think.


DR. SAUREZ: Just building on some of the comments about alignment and convergence, in some ways we have started to work on and have done some work on another roadmap, the administrative processing roadmap, and this goes to the comment about the dichotomy that we have created and still persists between the clinical world and the clinical processes and the administrative world and the administrative processes, and in some ways what we have tried to do is bring better alignment and show really a continuity across the system, because I think as Alix said, the data comes from the same place, whether it’s for clinical care or for administrative processes.

So I think the contribution perhaps that we can provide to the roadmap is a supplemental view of the administrative processes, and it’s not just — that’s one of the beliefs I have about the roadmap and most of these roadmaps; they really tend to focus on data and the movement of data and the ability to exchange data, and certainly the ONC roadmap shows that there’s a lot more than just interoperability of the data.

You can have perfect systems communicating electronically and exchanging data and still there is a lot of breaks in the process because of clinical care processing differences and business differences and all those things. So in some ways one needs to elevate the discussion about interoperability and go beyond the traditional 1980s IEEE definition of interoperability to really look at not just machine-to-machine communication but now we’re talking about process interoperability and semantic interoperability and cognitive interoperability and policy interoperability and administrative processes interoperability.

You know, as I was thinking over 12, 15 years, well, 20 years now since we started HIPAA, how much interoperability there exists in the administrative side, and it’s quite limited actually. In fact, we’re now moving into the third generation of standards called operating rules that try to advance better the interoperability of systems beyond the pure transaction interoperability.

So I think that’s one opportunity that we have as a committee to provide some advice around this other world called administrative and this other component of interoperability called process and policy and cognitive.

MS. DANIEL: So I heard two opportunities that we’ll follow up on. One is connecting administrative and clinical interoperability, and the other is this — I can’t remember your term. It was cognitive interoperability, which I think is really fascinating. So we’ll follow up on those two and see if there’s an opportunity for NCVHS to help play a role in our thinking with respect to interoperability and looking for it on our roadmap.

Thank you.

MR. SCANLON: Thank you. Thank you very much, Jodi.

We will switch our speakers. Rachel, if you would bear with us for a moment, I think Lucia Savage has to leave the phone in about ten minutes. So why don’t we have Lucia if you can give us an update from the privacy side of ONC?

MS. SAVAGE: Sure. Your timing couldn’t be better, because it’s really a follow-on to many of the concepts and principles that my colleague Jodi talked about. So I am just going to take what Jodi said focus your attention about the roadmap on what we sort of said in the roadmap relative to privacy and kind of the feedback points we are looking at.

And I did send around about seven slides. These are essentially the same slides that I presented on the topic at our annual meeting earlier this month, with a couple of color modifications to draw your attention to some things. So I hope you have the slides in the room, and I will kind of talk through the content. So for those of you on the phone who may not have gotten the slides, don’t worry. I’ll go over it with what I say.

So one of the things that we observed as we were working through feedback over many years and preparing for the roadmap between our vision document and we had our vision document and our strategic plan, and the roadmap, is that we are in an environment where the rules relative to privacy vary widely. So of course we have HIPAA, and it’s our nationwide floor, and then we have a lot of rules that are additive to that because they add privacy protections on top of HIPAA, and they range from specialized rules that apply to the federal government whether it’s Part II or security rules like FISMA, to rules that states have enacted to protect their populations within their states, and those rules may have particular clinical categories or they may derive from particular activities or uses of the data.

So flipping down to the second slide, we kind of tried to illustrate that, and I want to talk for a minute about what we observe about that space and that difference.

So one of the things obviously is a lot of variation sometimes causes confusion, because people aren’t quite sure exactly which rule applies to what context and there are so many and it’s hard to choose.

But there are a couple of other things we observe about that. A lot of the rules are actually quite philosophically well aligned. They’re trying to accomplish the same thing from a public policy perspective. It’s just that the method they choose to accomplish that might vary and the confusion starts manifesting in the variants of implementation, not the variants of philosophy.

Secondly, we also observe that we have an environment in the wake of HITECH in particular where not only do we have rules maybe that preceded HITECH and may have derived from a different public policy environment and certainly a different data environment, but on top of all that, we had some statutes, some regulations, some executive orders, some organizational policies enacted in the wake of HITECH, which themselves sort of add to the environment that people have to account for as they’re making decisions about where data goes and where it doesn’t go and what the privacy standards are that applies to it.

So we have this diversity, you know, similarly situated types of organizations themselves have variation amongst their policies. I don’t want to belabor the point. If you were — I don’t know who it was who was speaking about having a roadmap under their pillow; I definitely feel like that myself sometimes, but we have a very extensive bibliography in the roadmap which is all the ways in which ONC and others including the NTA and independent parties have sort of documented this environment over the last seven to ten years, and I know we have some old-timers like myself on the phone. So it goes back to HSPC and a lot of great work that ONC did under Jodi’s charge many, many years ago. So I don’t want to belabor the point. We’re not going to re-document that which we’ve already pretty much confirmed.

So when we look at this environment of philosophical alignment but diversity of implementation, and we think about the fact that we arein 2015 and we have these amazing computer abilities and machine learning and we want to figure out how to take advantage of that so that we can wring some efficiencies out of the system and ensure that there’s good compliance with rules or choices that apply to the data, privacy rules and privacy choices, what do we get to? We get to what I’m calling computable privacy.

So people have talked about this as electronic consent management; can we figure out how to manage a patient’s consent electronically. I think it’s really not about that. I think it’s about the interface between the provider and the patient about the data, and I think about how we every day, manage our driver’s license renewals and our 401(k) plans and our grocery shopping and even maybe appointments to visit our kids’ teachers. We do that all online.

And we should have it. We should be aiming for a system where a person — two things: one, where overall the system understands what to do with data in the absence of a documented privacy choice, and I’ll talk more about that in just a minute, and I am going to get through this in seven minutes, I promise.

And secondly, that when a person wants to document a choice, that can be done easily and quickly on a smartphone or a tablet or their home laptop or a secure login through a library system, you know, their public library, in the way they manage the rest of the information in their lives.

So I coined the term computable privacy, and that’s where we’ve written the roadmap to try to build us in three phases to get to that over the ten years. A to some of the points Denise was making earlier, and that Jodi was echoing, sometimes we have to walk before we can run, and so people ask me what does this mean? Well, we have to figure out how to do this just in the first instance to get the data to move where it needs to move for the patient’s care, and then we build on that with standards and harmonization of rules through the ten-year period until we get to the learning health system. We can’t start with computable consents for research, because that’s not — the dire need is getting the data where it needs to be for people’s health, their direct health care.

So slide four is just an example of the variation that we see. I’m not going to belabor the point.

And slide five is kind of an infographic of all the different natures of rules that are in this onion you might be peeling back. We have what’s happening in the physicians’ offices. We have consent directives, whether they’re paper or electronic. We have do the systems in which those consent directives apply to the data in those systems; do they interoperate about those consent directives? Does the architecture of an information exchange environment model matter? Is there variation in the way the rules work: opt in, opt out, opt in with restrictions, pick your doctor, pick the nature of your data, pick the date range of your data. Those are all ones that I’m familiar with.

And on top of all that, those are the kind of choices people make, we have actual rules which derive from legislative activity, which happens in a public policy debate that’s open and everyone can participate in it. So pretty complicated environment.

So where does that take us in terms of the roadmap — and I’m on slide six. So I think it takes us — the three three-year phases of the roadmap really line up well here. I think if we’re really focusing on treatment and delivering care where the person needs it for their care, delivering information where the person needs it for their care, we have to start with the one rule we have that applies everywhere, which is HIPAA, which nicely has — remember the permitted uses? And I think we talked about this when I first met you guys in the fall.

Those permitted uses actually support the interoperable exchange of information for treatment, payment, and the covered entities’ health care operations as kind of background rules. There’s a whole bunch of rules within HIPAA about how that data moves around within the health care system itself so that the health care system itself doesn’t come to a screeching halt.

On top of all that we have an environment in which while the law doesn’t necessarily require a person to have been offered a choice to have their data electronically exchanged or not, those choices have been offered in policies and in state laws, so they are manifest. They are here right now today. So the second task we have is can we bring some standards and structure to that environment where the choice to have your information exchanged has been offered; can we bring standards to that?

And then lastly, and this is the long runway, we have this wide diversity of state law. How can we help the nation as a whole aim towards the philosophical alignment already manifest in those laws and in the process clean up and harmonize some of the differences that make it really hard for or really expensive to apply machine learning to a super diverse environment? And just to kind of size it for you, if you take the number of states that have specialized laws and you sort of multiply it in general — this is a very rough calculation — by the categories, there are about eight categories, and you add into it they may have the variable of an opt in opt out law on top of all that, you get about 300 laws in 53 jurisdictions. So that’s a very rough calculation. The mathematicians in the room will go that can’t be right, and it’s not. It’s just to try to illustrate the point of the complexity.

So we’ll really be spending — my office will be spending a lot of time in the immediate future working with OCR to help remind people about what the permitted uses are, to develop materials that help people understand the permitted uses in the way the health care system operates now in 2015 or will be operating in 2020. You can see in the slide it refers to telemedicine, et cetera, and building from there.

So I’ll stop. I have about one minute for questions, and I’m sorry we’re running late and I have a conflict I have to get to.

MR. SCANLON: Thanks, Lucia. Time for one question.

MS. KLOSS: Hi, Lucia, and thank you so much. I love this cake.

One of the issues I’m struggling with, and I think our Privacy, Confidentiality and Security Subcommittee can kind of take it up and provide some feedback, but it seems to me that while the permitted uses may be clear, all of the background rules that are needed to really give patients basic choices are not yet fully in place, accounting for disclosures, standards, and guidelines.

MS. SAVAGE: Didn’t you just tell me this yesterday, Linda?


We had this same presentation at the Privacy and Security workgroup, so I have written it down in my notes, Linda, and I’m sure you want to — that’s exactly the kind of feedback we need, and I think that you will see in the roadmap not only we but OCR, who is in fact the author of the rules and the guidance, is looking for stakeholders to say we need more information here and this is why it’s a priority.

MS. KLOSS: Well, and I bring it up again because I think our subcommittee perhaps can at least weigh in on making some recommendations in providing some feedback with regard to those kind of outstanding issues that frame basic choice. Thank you.

MR. SCANLON: Thanks again, Lucia. I think I don’t see any other questions, so we’ll thank you again and I think we’ll let you go here.

MS. SAVAGE: Thank you so much, and I look forward to talking with you next time.

MR. SCANLON: We will turn it over to Rachel. We’ll take a break after Rachel finishes, and then we’ll continue on.

MS. SEEGER: So I am going to drill through quickly and not use slides, but I did want to highlight for all of you some of what’s been going on behind the scenes at OCR and talk a little bit about what our plans are moving forward into 2015 that are more outward facing.

First of all, we have implemented some significant efficiencies. As many of you know, since the compliance date of the privacy rule in 2003, the number of privacy and security complaints filed with OCR per year has steadily grown. That really is an understatement. In FY2015 we are likely to receive close to 17,000 complaints from consumers.

In order to keep pace with an increasing caseload, we’ve instituted a number of proactive efficiencies, and first and foremost is a customer response center which centralizes the task of responding to telephone inquiries from complainants. I really can’t underscore how voluminous this is.

Also calls from covered entities and the general public at OCR headquarters. This is really a dramatic shift for us in our core process. That’s led to significant efficiencies. It’s freed up the time of regional office staff to focus on investigation, outreach, and other enforcement activities. We are also able to provide in-language services to callers who don’t speak English, which is huge.

Language access and website improvements. We have the world’s worst website, and I’m really happy to say that we have begun a substantive website redesign. The assistant secretary for public affairs tells us that we are by far the most trafficked spot on HHS.gov and that we outrank ACA four to one in terms of searches on privacy. So the most popular website is one of the most difficult to navigate and understand, especially for consumers.

So one of the things we are doing is audience segmentation. So there will be consumer-related material and professional-related material that’s carved out in a way that’s logical and easy to navigate.

We’ve done some small steps towards this in highlighting and centralizing all of our translated material on our home page. It’s one of the first things you see when you come to our website, materials and language, and we’ve been pushing that out too and working very closely with CMS and the marketplace to make sure that individuals who are navigators and who are helping individuals navigate the health care system know how to provide individuals with information on their basic rights, not only under HIPAA but also under the Civil Rights Act, the ADA, 504, 508, accessibility, et cetera.

So moving along, we’ve also instituted what we call a central intake unit. This is a unit which evaluates, triages, and distributes all of the cases that we receive. This used to all be done out in the regions and this is now a centralized function in headquarters to refer and triage the more complex cases back into the regions, and we can close out cases that we’re getting, which are many, that are non-jurisdictional.

We have also introduced an online complaint portal. This, again, is a more expedited method for individuals to file complaints with OCR outside of mail, fax, or phone, and the complaint forms are available in seven different languages and our intent is to expand that over time.

And I do want to say that we have an incredible online survey tool through ForeSee that gives us some great customer satisfaction data. The complaint section of our website had traditionally scored one of the most negative areas, and we have in the first month gone to 84 percent satisfaction. That’s an increase of over 20 percent in that score since the portal went live.

2015 will be very busy for us. Our strong enforcement of the HIPAA rules will remain on track, and you are going to be seeing some high impact cases that will send strong enforcement messages to the industry coming soon.

In terms of our particular activities, we are working to issue a final rule on — this is the identifier, the mental health prohibitor. Many states have stressed a strong opinion that HIPAA created a barrier for sharing information with a national crime — it’s the national firearms database. It’s managed by the FBI, and this is for individuals who are applying for a permit to own a firearm. That rule is now at OMB.

We are also planning to issue an advanced notice of proposed rulemaking to solicit views on establishing a methodology under which an individual who is harmed by an offense punishable under HIPAA, they can receive a percentage of any civil money penalty or monetary settlement collected with respect to that offense. That’s required under HITECH.

We will continue working on issuing guidance and guidance is in the works on cloud computing and HIPAA, and we have been working on establishing a portal that will enable stakeholders to more effectively communicate with us on issues on which they would like additional guidance.

Finally a word about audit. We are committed to implementing an effective audit program, and an organization should continue to monitor the OCR website for future announcements on this program.

MR. SCANLON: Excellent, Rachel. Any questions? Walter?

DR. SUAREZ: Two quick questions. Thank you so much, Rachel.

The first one is about potential need for understanding better the implications of new technology capabilities such as data segmentation for privacy and data provenance. Those two areas are advancing technically quite rapidly, to be fair and honest, and there are already standards in place, developed and adopted too by the standards development organizations.

Yet it seems like the perception is that once things like data segmentation for privacy are required to be part of an EHR system, that will imply or make the sort of intrinsic requirement almost that for everything and anything consumers will be offered the capability, the ability, to do and request segmentation of data.

The reality is there is only one very narrow application of that concept, and that’s under 42 CFR Part 2, but the concern is the perception that once the technology is there and this is part of the technology driving policy versus the other way around, the perception out there is that, well, we will have the capability of segmenting data, and so now consumers will be asking for that type of segmentation across the board and not knowing and understanding that the only area where it is required right now is under 42 CFR Part 2.

So that’s one area that I’m very worried about, that these advancements in technology that allow us to do things like data segmentation or data provenance are going to create some unforeseen and unrealistic expectations in consumers. So one thought about areas for potential guidance, I suppose, and also public education.

MS. SEEGER: We have already been in robust discussions with ONC and Lucia’s office with her staff on this topic, and I think you’ll see more guidance or at the very least outreach coming from our office on this topic.

DR. SUAREZ: The other one is about cloud computing, and I don’t know if there is any opportunity or need to consider some feedback through any mechanism about what the industry thinks about cloud computing and the implications for applying privacy to it. I wonder if there could be an opportunity to do some of that, particularly with cloud computing, because I think cloud computing now is of course exploding in front of us, and there’s a lot of misunderstanding about how does HIPAA apply to it.

MS. SEEGER: So really that is the purpose of that data portal, the communication portal that I mentioned at the very end of my talking points, so the industry has more opportunity to share with OCR. We also hear a lot from app developers obviously and others who are involved in developing an emerging medical device technology. So this is a perfect platform to be able to hear from those audiences on a regular basis outside of our rulemaking and outside of conferences so that there’s an open forum for communicating with the office, responding to guidance that we create, but also asking for additional technical assistance and guidance that we can develop.

DR. SUAREZ: One final quick comment. This is more a comment than a question for all of us here. I know that 21st Century Cures legislation has some language about modifying the definition of health care operations to include data for research, and the purpose of that being of course that the 21st Century Cures legislation is attempting to advance the ability to identify and develop and make available new treatments and cures, and one of the areas is really expanding accessibility of data for research purposes, and so moving research from the current classification under HIPAA and the protections afforded — and the requirements to protect data — into health care operations created a lot of interesting questions.

So I know there is a lot of opportunities to comment on that, on the 21st Century Cures legislation, and it’s just more a comment for the committee than anything. I won’t put you, Rachel, on the spot.

MR. SCANLON: Thank you. Other questions for Rachel?

MS. JACKSON: Any comments on the phone? We always try to schedule, as you see, the rich discussion that comes from the leadership here among the agencies. We do appreciate this. We’ll have to try to put in more time. There’s not enough, because there’s so much that impacts the national committee. So thanks for those that are able to join us.

MR. SCANLON: It does help in getting everyone up to date on — as you know, things are moving very quickly in all of these areas. So this is a good opportunity to have our experts come over and get everybody more or less on the same page but look at what’s happening ahead as well.

Okay, I think we’ll take a 15-minute break, and then we’ll continue with the agenda.

[Brief recess.]

Agenda Item: Population Health—Supporting Community Data Engagement, Action Item 2/25

MR. SCANLON: Vickie, let’s let you introduce yourself.

DR. MAYS: Good morning, Vickie Mays, University of California Los Angeles, member of the Full Committee, member of other subcommittees and the working group. No conflicts.

MR. SCANLON: Okay. We want you to be careful at UCLA Hospital there, Vickie.


So, Bill, we have — this is the report of the roundtable right there.

MS. JACKSON: We’d like to have a count for dinner tonight, for those of you who will be joining us. It’s a Thai restaurant that’s nearby the hotel.

The meeting will adjourn after about 5:30, and I think we have accommodations to get you back to the hotel, and the dinner would be 6:30 as scheduled, maybe about 7. So if there’s a count for those who would be able to join us, we’ll get a quick hand count.

[Show of hands.]

Eleven and several who will let me know otherwise. So, thank you.

MR. SCANLON: Well, our two new members have survived the morning session.

We are going to turn now to Community Data. The committees have a lot of work in this area, and Bill and Bruce are going to bring this — this is an overview and a discussion of the report, summary from the Community Data.

DR. COHEN: Great. So let me just lay out what we hope to accomplish in the next two days around the Population Health Subcommittee. For the rest of this morning, we would like to consider and get feedback on the roundtable report and this report is intended as a working document for the committee that will be attached to recommendations that we subsequently make to the Secretary and other further actions we take. So the focus of reviewing the report is really not to make recommendations or refine some of the information and strategies that we discussed but really just to officially approve the report.

The more exciting discussions will either happen later this morning or tomorrow. There’s a piece of paper that has an uncompleted table in it called NCVHS Strategy Triage Worksheet that you all have in your packets. Walter’s fine suggestion, he felt that in order for us to move forward from all the activity in the Population Health committee, we need to triage what we feel is shovel-ready ready for action to make recommendations to the Secretary.

This is an interactive exercise that we’ll all be engaging in either later this morning or beginning tomorrow. Tomorrow we’ll also be discussing the framework.

So today it’s just to get feedback and hopefully finalize and approve the roundtable summary, and then we’ll move onto the more exciting consideration to see if we can reach consensus about what some of the priority areas are for the Full Committee to recommend to the Secretary.

Janine or someone, whoever has electronic copies of this strategy triage worksheet, could you make sure that this gets sent via email to other members of the committee who might have dialed in?

MS. KANAAN: Bruce, may I just add that there is a landscape format version of this that’s going to be reproduced. So people will have something that’s a little easier to write on.

DR. COHEN: Okay. So this is just a preview.

So what we decided to do with respect to the roundtable report is rather than reproduce the slides for the entire report, the entire report is in your agenda book and hopefully folks have had a chance to read it, and I really need to commend Susan Kanaan for a phenomenal job of pulling together the themes and just the content of the roundtable. She really did a fantastic job of capturing the flavor of really complex discussions.

So Susan, where are you?


It looks great. So in order to focus our discussion, what we just highlighted up that we have on the slides here are the last two sections which are the ones that we thought might engender most conversation around what the outcomes of the roundtable were.

So actually before we get to the detailed slides that go through sections 4 and sections 5 of the roundtable, are there any comments about the first three chapters of the roundtable report?

Hearing none, I will move on.

MR. SCANLON: Bruce, can I ask you, for the benefit of the two new members, just a little two-minute background?

DR. COHEN: Oh, thanks. So this roundtable was a roundtable around community data engagement, and the idea was to pull together three groups who really haven’t been in the same room very often with respect to discussions around community data, data providers, and our focus on this first roundtable was federal data providers, community groups who are the ultimate users of these data, and the third group is this emerging group of data intermediaries, data connectors, folks like Community Commons, Health Data Rankings, and to some extent the foundations that are trying to package and promote the use of the data. NAHDO certainly is another example of an organization that tries to make sense out of the overwhelming data soup.

So we tried to get these three groups together in a conversation to see where we could move community data engagement forward with respect to the delivery of actionable data to the community and to help ultimately in — since the NCVHS focus is on the federal government, what guidance and advice we could give to the Secretary about how to improve data collection, compilation, distribution, and provision of technical resources that will move communities forward in their ability to use information.

So that was really the focus of the roundtable, and it was a really exciting two days where we heard from a variety of federal agencies, a variety of community representatives, and a variety of intermediaries about how we can do better.

PARTICIPANT: When was this done?

DR. COHEN: This was October.

So the first product, there were several suggestions, but the first product is this working paper that we’d like the Full Committee to endorse. So I’ll just run briefly through some of the priority areas.

So increasing mutual awareness and coordination among federal government and intermediary organizations. We realize that we heard programs and processes going on, like in SAMHSA developing technical support at community levels that other folks and federal agencies haven’t done as well. We heard from some of the data intermediaries about their strategies for outreach. So that’s clearly something. The bottom line here is NCVHS needs to do some more learning, and we need to coordinate some of these better.

It became clear the second issue, institutionalize and community voice, we’re not really sure — this is more I think a long-term generative issue than a shovel-ready recommendation about how to do this, but clearly as open data become the mantra and the goal of the federal public health agencies we need to make sure we build data systems that have input from communities and are community-focused from the beginning, rather than trying to lay that on at the end.

We’ll get to user-centered design and infographics later, but clearly some of the data can be overwhelming in the way it’s released and disseminated; in order for communities to be able to use it, we had several suggestions, themes, about presentation that the data providers and data intermediaries might work on.

As I go through these, if you have any questions or comments, please feel free.

MS. KANAAN: Could I make one comment about the two big buckets? I thought it might be useful to say that a lot of the work of synthesizing the ideas, the amazing number of ideas that came forward, was to figure out what buckets to put them in, on what basis to synthesize them, and we did a lot of that work at the roundtable, but ultimately we ended up with two large buckets, and I thought it might be helpful for you to be aware that one bucket really focuses on reorienting the data enterprise to better serve communities and the second focuses more on facilitating community data engagement. So those are kind of the overarching categories in which there are a number of bullets in each case.

You can see it on the hard copy, if you can see it more easily.

DR. COHEN: Thanks, Susan. I neglected to mention that. Thank you. So we’re talking about reorienting the data enterprise right now, and these are strategies.

Two-way data flow came up as an issue. It’s not all data providers giving data down to communities. There might be some opportunities to strengthen data use through activities going on into communities that can be built up.

Although the primary focus of the roundtable was not on identifying specific data gaps, certainly these three issues, mental health, substance abuse, and costs came up in a variety of conversations from the community. Small populations, again, targeting isolated populations, targeting specific population subgroups, whether they be defined by race, ethnicity, gender identity, came up as well. You know, what’s the federal government’s role in trying to help communities collect data or generate data for these communities?


DR. CORNELIUS: I have a quick question. Thinking about the two buckets that we have here and looking at the chart that we’re going to work through, will there be a way to connect the two buckets with the items here? Because when I read through the different points, I’m kind of seeing things, but then I’m not.

DR. COHEN: So my response would be, you know, as we draft the letter to the Secretary and as we develop our work plan, we can look at that to provide context and maybe organize our thoughts. I think if you’ll keep reminding us about that and think about it as we go through how to do that better, that would be really helpful. Thanks.


MS. LOVE: Yes, it would help me; I am trying to refresh the roundtable discussions, and this report is excellent and a good job, but when we talk about the data enterprise, are we talking data enterprises? I mean, there isn’t one. I’ve struggled with the primary data collectors such as vital records or hospital discharge data. Then maybe the community entity that’s repurposing a lot of those data as another kind of data enterprise. Is it referring to both or one or the other? I guess that was my confusion.

DR. COHEN: I think both, you know, and maybe we need to clarify, because sometimes we’re talking about the primary data collector versus the intermediary who might aggregate to county level statistics versus the repurposing of data for a variety of uses. We didn’t get very much into clinical data, but I see that happening.

For me, the data enterprise is a continuum.

MS. LOVE: I agree, but a lot of the decisions on the primary data collection side, and I’m speaking from perhaps hospital or claims data, a lot of the vetting and the political concerns and the policies are set when the rule is put in place, and a lot of this who gets it and at what level has already occurred by the time it gets to the community user; they can’t go back and say, well, only these hospitals get the data or the results. I mean, those conversations have happened way upstream, and so I just — when I read a couple of those things, that just jumped out at me, that some of the community initiatives can’t go back and undo some of the policies that the hospital reporting system has already put in place.

DR. COHEN: I will let others chime in. My response is it would be great if those voices were upstream as well as downstream, and in terms of future recommendations that’s what we hope to move towards.

Susan and then Vickie?

MS. KANAAN: The reason I used that term, I think the two buckets into which the strategies are placed, one is more oriented to the data supplier and the other is to the data user, and the term data enterprise was used in the committee’s report on the vision for the 21st century. That was a term that Dan Friedman and his coauthor used, you know, I think basically talking about the data suppliers, about the federal data enterprise. So your comments are suggesting that the term isn’t clear, though. I mean, it’s a kind of term of art within the committee maybe, but it doesn’t translate.

MS. LOVE: Well, when I read it I just was thinking do they mean the community information initiative or the —

MS. KANAAN: Really the suppliers, the source.

MS. LOVE: But it may have just been me.

MS. KANAAN: Probably not.

DR. COHEN: Maybe we should think about changing it to data suppliers if that’s the reference there explaining it. So we’ll talk about that.

DR. MAYS: Mine’s on a different point. Where you have the kind of two big — on page 3, and it’s possible strategies for reorienting the data enterprise to better serve communities, and I know that you had sent the email out about alignment between what the workgroup is thinking about and what Pop is thinking about.

Where there’s one thing here that we would differ a little bit on, your goal says increasing the data information relevant to community health, and I think just a little bit of clarity there would be helpful, because we don’t think that we need to increase data, and what we think is that it’s about the issue of usability of the data, like there’s a ton of data. In a funny kind of way, HHS has so much, it’s a wealth of data.

So we’re trying to get communities from our perspective in the workgroup to think less of saying we want data that’s something new and for us to think about ways in which to make the data that we have in a new format or in a more usable format. From an alignment perspective I think we want the same goal, but our terminology would be a little different.

DR. COHEN: I am sorry, I don’t see where it is, or when we get to it, will you remind me?

MS. KANAAN: I think she’s talking about the executive summary. Vickie, I think we did mean more or less the same thing, because the operative word there is usable. So it’s relevant to community health I guess is what we want to put right there. But it’s not necessarily more data, but it’s more usable data, more relevant data.

DR. MAYS: We are trying also to get communities to think about that, that we’re not sure always that it’s more. When they see more, it means give me a different data set or give me something else, and then that puts the onus on us if we kind of change that to say, well, let’s figure out how to give you what you’re wanting out of what we have, because we probably do have it, and the places where we don’t have it, I think that’s where we need our policy to help drive, like we don’t have it drilled down enough for example in terms of race/ethnicity. We don’t have — if the clusters are too small. That gives us something to work on, but I’m just — we’ve been having these discussions about this in the workgroup of trying to change that in terms of kind of the operative of we want more.

DR. STEAD: Let me just ask would we bridge this if we said increasing the relevance of data and information to community health; if we move relevance forward in that bullet, would that align the phrase? Because I believe the intent is the same, so I think we have a wording problem. Would that solve that?

PARTICIPANT: Seems like it, yes.

DR. MAYS: Well, see, I am very biased because of what the workgroup’s name is. I think it’s increasing the usability of data relevant to community health.

DR. COHEN: We’ll go back and look at that. We spent a lot of time discussing the word actionable as — finally we dropped it, because everybody liked it, but we couldn’t figure out exactly how to define it.

So your point is well taken. We’re not necessarily — we need to make some sense out of the chaos. That doesn’t necessarily mean generating more data. It means providing the data in a way that communities can use better. And we’re certainly aligned with respect to that.

DR. WALKER: This is Jim. Just a note on that. The technology adoption model, TAM2, is perhaps the best empirically supported theory of technology adoption, and it holds that two things that most determine technology use are usability and usefulness. I think those are nice simple natural English terms that sort of get at what this discussion’s been trying to get at that would be a perhaps useful way to sort of say what kind of information we’re trying to provide.

DR. COHEN: That is really helpful. Thanks, Jim. We’ll try to incorporate that.


DR. ROSS: Yes, I just want to make sure I understood what Vickie was saying. What I hear you saying is that communities need help clarifying the questions for which they seek information. I mean, they want answers to questions. Answers to questions is about information. I go backwards then to try to say do the data, sort of the atomic elements of data, exist that if assembled correctly could be the answers to those questions instead of saying there aren’t enough data; let’s go find some more. Because I kind of agree with the point being made that we may be swimming in data; what we’re absent of is clear information, but in part because I don’t think we’ve been clear about the answers to — or the questions that we’re asking that drive the need for the analysis of the data.

DR. COHEN: Certainly that’s been a focus of a lot of discussions we’ve had with communities, how data are used in making decisions. Data are only one input into answering questions or actually figuring out how to frame the questions themselves.

I think that was sort of out of the scope of our focus here, because it would have just been overwhelming to try to tackle turning data into information, although that’s certainly the context that this needs to be considered in, and I think also as we go through this, issues around providing technical resources from the feds and from state and local government to help communities better define these questions is a sweet spot or something that everyone thinks should happen.

You know, we spend so much of our resources generating small bits of information. If we use a small, small fraction of that information to help do exactly what you say, it might help the data exchange a lot more.

So some of the other issues. The next bullet is around accelerating work, here’s from the data providers that are more around releasing real-time data and working on methodologies for local data collection and small area estimation. You know, everybody is really happy that they’re not on county level data, but county level is way too big to really influence neighborhood decisions, except in rural areas where county or groups of counties might be a place for real community intervention, and NCHS is doing some work on provisional data. Clearly we want to promote the understanding of when are the data good enough for a particular purpose to be released.

This came up earlier in discussions, and Paul Tang has been the most influential in my thinking about this. We began talking about smoking. The clinical definition of smoking, how states collect the data or NCHS collects it on NHIS or in NHANES versus BRFSS versus how communities use these data is really disconcerting to the extent that there’s no uniformity of understanding how to operationalize concepts, and more work needs to be done on this. I think Bill and his IOM group that I think, Dave, you were a part of, have done a phenomenal job promoting that concept.

An underlying theme again that emerged is as more data are used or as data are repurposed, we need to be vigilant about protecting how these data are used and the identity of people for whom the data are collected.

Denise, this first bullet actually goes back to something you said at a workshop or meeting several years ago. I mean, it’s sort of the agricultural extension model. We’ve updated it to data concierges.

PARTICIPANT: At least you didn’t use data therapist.


DR. COHEN: But the idea is there needs to be a way for data suppliers or data connectors to provide more boots on the ground, data boots on the ground. Maybe you know the regional HHS offices need to be more proactive in providing these kinds of services. This is something that I think we need to follow up on, but it’s clear providing technical support is necessary to create the usefulness for data that Jim mentioned.

Aligning data platforms. Huge, huge issue. As more and more data are out there in public, there are more places to find infant mortality rates that might or might not be the same. Lots of different folks use different platforms. How can we align the presentation and the actual quantitative values for data that are there?

Disparities information. This was actually, Dave, something that you were talking about, linking information to strategies that help address them. These are all things that came up about improving how data can be useful at the community level.


DR. MAYS: Can we think of something else other than using the word disparities, because sometimes some communities don’t have disparities, but they have data problems. So we’re trying to kind of remember that, because there are communities who will say I get left out if it’s a disparities issue, but yet it’s a population that indeed does need the information, like some of the Asian and other Pacific Islander — well, the Asian; I won’t say the other Pacific Islander communities — will complain that they’re then left out if you use the word disparities. So I was just going to say what I had was linking data on health issues.

DR. COHEN: Okay. I think the focus is on small groups in the population, like you said, so maybe rather than on disparities, linking data on small population groups to information on what works to improve their health or something like that? Would that be acceptable?

DR. MAYS: Yes, just as long as we change the disparities. I think if you want to make it very focused then I am all for that. Or underserved. You could also use underserved populations or vulnerable populations.

DR. STEAD: But isn’t — disparities is a recognized term. So it seems to me what you want to do is augment it rather than replace it. I’m asking. So is it disparities and other health issues, or health — I mean, there are a lot of people when they see disparities will know what you’re talking about, whereas health issues is such a general term. I don’t know.

MS. JACKSON: And also eventually this will be a rubric material that will go to the Secretary and as far as federal and HHS nomenclature, the terminology is there. So maybe expanding rather than changing it. You can keep it under discussion. Just keep in mind your audience, your future audience.

DR. MAYS: Right, and that is what I was in the sense that this is getting to be an issue that keeps coming up around how we use disparities and who is included and who is not. Remember there was a White House initiative this came up. I know this is going to be an issue in another one that’s coming out.

DR. COHEN: So, again, here the concept is not only race and ethnicity disparities but others, socioeconomic, differential ability.

DR. MAYS: See, I think what Bill is saying, can we have some modifiers. I think if we have modifiers then we’re good.

DR. STEAD: What we’re really talking about is disparities and diversity, or diversity and disparities.

DR. COHEN: So if you have suggestions on language, could you give it to Susan?

DR. MAYS: I think that that is excellent. That’s like — diversity and disparities. That’s the new language we ought to think about, Bill. Diversity and disparities.

MS. LOVE: And I just want to make sure I understand linking data. I mean, because to me when I think of linking data is to fill information gaps, but is this linking data across data sets, or using —

DR. STEAD: It’s the data on the diversity and disparities to the information on how you respond to those variances. That’s what we mean by it.

PARTICIPANT: That’s helpful.

DR. STEAD: Making it actionable.

MS. KANAAN: That’s the problem with slides. There’s a lot more language in the report.

PARTICIPANT: I don’t have a problem with it. I’m just trying to picture it.

DR. MAYS: I think what it is capturing is the movement where we begin to talk about intersectionality, and in intersectionality what we worry about is when we start trying to put some of the diversity with the disparity so we have gender and race and SES all coming together, because that’s a social determinance model, and that’s really what the disparities is about, if we start saying that more, it really gets to the point that Bruce is saying about the small populations; it makes us think about not just a small population but to answer what we need in order to reduce the disparity.

We actually need intersectionality. We need to know the smaller groups that may have greater burden or to discover what the burden is when you add either SES or gender or something like that. So there’s a lot — it’s kind of like, as Susan says, if there’s somewhere where this can be written in greater detail, because it’s the essence of where we’re trying to go with data these days.

MS. KANAAN: I think that is a major point that we make in this report.

DR. COHEN: Is intersectionality — will that work with Words with Friends when I play?

DR. MAYS: It is a real term. I even edited a special issue on intersectionality. It’s a real term. I’ll give you some references.

DR. COHEN: I haven’t heard that term, but I think it’s really — okay, moving on.

So developing standard platform for state and local. This is my thing. I mean, there are lots of web-based data query systems. CDC used to support the discussions among states in a variety of groups about trying to unify the approach to provide data in simple web-based platforms. I think this would help clarify some of these definitions and uses. Dan Friedman and Gib Parrish wrote a wonderful summary of what’s out there. This should be updated and promoted around data practice, but this is what that bullet is about.

We also need to revisit one of the suggestions that came out of the roundtable was establishing a community of practice to continue these conversations and to get input from a variety of sectors, and I hope if we get a chance later today or tomorrow to discuss the work plan for the entire committee, part of the work plan for the Population Health Subcommittee will be to try to figure out how to move forward on creating a community of practice.

MS. LOVE: At the risk of disagreeing a little bit with the chair, is there another — rather than standard platform, maybe standard functional requirements? I just am worried about the platform term across states, because I really tried that and it didn’t work.

DR. STEAD: How would reference architecture work?

DR. ROSS: Yeah, I think we’re both are sort of on that same side. Reference architecture strikes me as more realistic.

On the community of practice recommendation also, our experience there is that they can be very, very powerful but yet to be functional there has to be a very strong business case behind them or they have to exist over time, a long enough period of time to influence enough people bringing enough thinking together. What’s the business case behind doing this? Was that discussed?

DR. COHEN: Yes. Well, it wasn’t discussed at the roundtable. It was discussed afterwards; why are we doing this and what will it accomplish?

MS. LOVE: Is it communities, not a community? Because the learning networks that I’m participating in have very specific needs, but there could be like many of them.

DR. ROSS: I don’t want to derail this discussion, but yes, that’s the point.

DR. COHEN: So I guess we were looking for a mechanism. The roundtable itself was so rich and ideas were bubbling. We wanted to keep those people engaged and we wanted to actually expand the conversations to others who couldn’t participate to help us build on their knowledge and expertise. So the idea for this specific community of practice was to continue around the theme of community data engagement, and as we develop the framework that we’ll talk about and the roundtable report and strategies, the focus would be to get more feedback from a broader sector of institutions and organizations and individuals on how to move forward. So that was the purpose of this specific community of practice.

DR. STEAD: But I think a general edit which might deal with some of our other challenges around what NCVHS can and cannot do would be to simply change community to communities for the purposes of getting this summary in place, and then we can work it in recommendations, if you would accept that edit.

DR. COHEN: That is great, and also for the first — and Susan, for the first bullet, rather than a standard platform, standard —

PARTICIPANT: Reference architecture.

MS. KANAAN: Which actually was in the 2011 report, had that very recommendation.

DR. COHEN: So those slides so far have really been about possible strategies. We tried to hone in in the second morning of the roundtable on just thinking about some possible next steps. None of these — these will all need to be played out and investigated in a lot more detail, but to keep true to the summary of what happened at the roundtable, we felt it was important to provide this discussion in the working paper.

Here are the some of the things that folks talked about. Clearly we need to continue and learn more about relevant activities in the federal government, and folks from the VA and SAMHSA who hadn’t been in previous conversations had some great ideas and are doing some wonderful work, and it made it clear to us and our small group — although we did try to reach out — there’s a lot more internal learning that needs to take place.

And we’ll talk more about the data methods framework and how that fits into some of the activities.

Platform alignment we talked about. This was, the second bullet addresses this specific issue, Denise, that we’re talking about, to really help us continue the conversation.

A theme that really is central to the work that NCVHS has done and certainly the Privacy and Security committee is really, I think, the national leader in thinking about data stewardship and confidentiality, and our ultimate — and again, this needs not to be an afterthought. This needs to be built into the processes before. As more data or more granular data become available, the potential for these issues to become magnified takes place, and that’s really something of concern.

And again, this goes back to the sentinel indicators for community health data. I don’t think we’ll ever achieve the holy grail of, you know, a set of indicators that everybody will use, and it’s appropriate that that doesn’t happen, because people have different purposes for their community work, but if we had agreed-upon definitions for a core set that, you know, not only at the county level but at the neighborhood level and if we could figure out how to populate those data at levels where interventions take place, how wonderful that would be.

And I guess the question is what is the federal role in helping promote data collection or helping communities develop ways to collect these data or estimate these data. I think there is — you know, there was consensus. We weren’t quite sure what it was, but certainly it’s a conversation that needs to continue.

Vickie, I’m sorry I didn’t recognize you sooner.

DR. MAYS: We have in the workgroup some of this came up, and the question here is what is our role. You were starting to talk about that, and that’s some of what we were trying to ask, and in this instance, is it that we’re talking about the datasets that like we would start with a leadership model of what the federal agencies have, or are you actually talking about — because you know there’s that group which is the group that’s doing the state datasets. There’s a consortium in that group. So who are we talking about that this is for? Is it for us, like in terms of purpose? Is it for us to put some science or evidence out there and it’s for the state to do it? Just it’s a little confusion.

DR. COHEN: Again, I think here if this is — we’re recommending that the Secretary try to make, increase the clarity. I don’t think it’s — you know, who is thinking that NCVHS can do this. You know, IOM has taken a stab, National Quality Forum, there are a variety of folks who are already in this space. We want, I think, ultimately some kind of convergence on these efforts so that people who use the data understand their options better. Our intention wasn’t that NCVHS get into this game. There are already more people in it with much more expertise than we have.

DR. MAYS: That sounds different than what’s written here then.

DR. COHEN: So maybe we need to —

PARTICIPANT: I’m lost. Which bullet?

DR. MAYS: Oh, I’m sorry. I was on the very last one, support acceleration of the work on public health datasets standardization, given to standardizing select state and county level data. So there’s something select. So the select, I don’t know if it’s the ones that the federal government has control over. I don’t know if it’s working with that consortium.

And then it gets into what is really our role. You know, we have great success at advising HHS, as does the Secretary can make it happen, but I don’t know what we do in terms of if it really is for states and county level, then we have to do it a different way. The way to influence that is by providing evidence that says these are the best indicators. That’s very different than what we usually do. We usually talk about hearings and then we give advice.

MR. SOONTHORNSIMA: So, actually I want to clarify maybe exactly what you just said, but maybe you can answer specifically; is there a sweet spot for NCVHS? Because what you just clarified made it even more murky, because like you said, because there are so many different agencies and entities who are actually doing this with some level of expertise. Now I don’t know then what our — when you look at all the sub-bullets, the bullet points here, which one is it? Which one is it that we could do with some level of expertise or even staffing to really hone in; therefore it’s not duplicative. And if it’s really more of a convener, so let’s call it out.

DR. COHEN: I think we were seeing that role as either convener or recommending to the Secretary that she convenes some kind of process to do this. I think there have been recent attempts that have moved the ball forward, including certainly the IOM report, you know, that Dave and Bill were instrumental working on.

The general sense of the roundtable was, you know, it was the issue that was raised before; there are too much data out there. I don’t know which set of indicators to use when I’m doing my community health needs assessment. So just the idea was not for us to reinvent the wheel and I guess I didn’t, I haven’t reviewed this carefully enough. I agree with your point. The focus shouldn’t necessarily be on state and county, but can we provide some — not we. Can we ask the Secretary or can the Secretary designate someone, whether it’s ASPE or us, to convene some sort of consensus development around indicators that everyone would be comfortable with? It doesn’t mean they all need to use them, but that are clearly understood. So that was really the intent of —

DR. STEAD: Let me ask just a clarifying — because I’m just trying to seek common ground. Since these aren’t yet recommendations, our goal here is to sort of know the direction for the committee. What would happen if we took this and cut it down to support acceleration of the work on public health data standardization with priority given to datasets relevant to a core set of sentinel indicators of community health? Would that solve the problem?


DR. STEAD: For right now?

DR. MAYS: I think for right now it would, but I think that a discussion should be had about what we can really do.

DR. STEAD: Yes, which is part of what our goal of our table is for tomorrow.

MR. SCANLON: If I could interject, so remember the committee is not an operational agency. It can’t carry out the work that a federal agency has to do, or others. The role of the committee is to assist and advise HHS and others. Sometimes the committee can pull together a framework or a view or a perspective that gives some guidance to everyone, but the committee doesn’t do it obviously. That’s not the way a FACA works.

Again, I think what we’re trying to accomplish is we’re trying to complete the report of the Community Health Data Workshop. We’re sort of taking what seems to be the bottom line, or at least good suggestions and directions out of it, as this part here, and I don’t view this as a recommendation. This is really meant to tie up the report.

So maybe there’s a way to say, as you do, that these were views that were presented at the committee. They are here for discussion. The committee may — you could say may, but you just have to be careful of the verbs you use in terms of what the committee’s role is.

The standards role is fine. Convening and standards, participating in, assist and advise, and efforts to accelerate. That’s fine. But we don’t necessarily describe the standards or carry out the mission, and the Secretary can decide what she wants to do.

Sorry, Dave, go ahead.

DR. ROSS: So the point here is what can this committee recommend to HHS that HHS could do in the use of community or public health data to improve community use of those data for health planning and other reasons. Is that what this is?

MR. SCANLON: Well, these are not meant to be recommendations. If they sound like recommendations, we’ll have to reword them. But these are — it’s not just HHS. It could be, there are a lot of other folks who operate in this ecosystem. Down the road there could be recommendations to HHS. There could be a framework that everybody sees themselves where they fit in and what they could do.

So I don’t think we’re quite at the stage of recommendations yet, and if this looks like recommendations, I think we have to back up to wording it. These are areas for consideration that arose out of the — we’re trying to, I guess, do two things here, summarize all the good information that we learned at the roundtable but sort of give, so what were the directions for future ideas? And that’s what we’re getting here, and here we’re sort of saying — and this is potentially what the committee could do, so maybe we’d just be a little less — don’t make it sound like it’s a work plan necessarily, more like areas for consideration. Does that make sense?

The recommendations themselves, they’ll be more specific down the road, and they’ll be what we could do or what the industry could do or public health communities could do and so on.

MS. KLOSS: In that spirit, might we want to just soften the sentence that precedes this list, because as written it says below we note the areas in which NCVHS plans to focus its attention over the coming year.

PARTICIPANT: That’s page 17.

DR. COHEN: So instead of plans, may plan?

MR. SCANLON: May consider, or is evaluating, or something like that. That way it just gives us some wiggle room.

DR. COHEN: That’s a good context. So, given that all we’re trying to accomplish today is create a consensus for the working report from the roundtable, having heard everyone’s feedback, we incorporate this feedback, can I call for a vote or would people just prefer to see a redlined version of the report? Which would people prefer?

How many people would prefer a vote now, committee members?

[Show of hands.]

How many people would — so it seems like a consensus.

So I guess, can I make a motion that given the feedback and the changes to respond to the feedback, can we adopt this summary report as a report of the roundtable?

DR. STEAD: Assuming that the edits will be made that we have discussed.

MR. SCANLON: Yes, the condition would be, Bruce, that subject to the edits being reviewed by the —

MR. SOONTHORNSIMA: Could we review those high level changes?

DR. COHEN: Sure. Has somebody been keeping track of those high level changes? Susan?

MS. KANAAN: I hope I’ve got them all. I believe the first one concerned we’re clarifying that really what we meant; it was really the terminology. And we’re not going to edit the slides. We’re going to — the language in the slides may be somewhat different from the language in the report. So let’s stay focused on the report.

The first point was Vickie’s point about we don’t want more data. so we want to clarify the goal statement there, and Jim suggested usability and usefulness, the usability and usefulness of the data that are relevant to communities. So that would be the first change, and I think that pertains particularly to the way the goal is stated, because I think more broadly we have made that point in the body of the report.

I believe the second modification is, Vickie, your point about diversity and disparities, and then I wasn’t quite sure how we wanted — that’s roman numeral IV, the bullet that now says linking data on disparities. Again, I’ll have to find it in the report.

So it’s B-3, linking data on — now, see here, the slides have really oversimplified the terminology is part of the problem, the challenge. So linking data on disparities and diversity to information on what works to — and then to page 16, the question is do we want to stick with the word reduce, or do we want to say something positive like to improve the health of specific groups, specific population groups or vulnerable groups?

[Comments off mic.]

Anyway, we’ll massage that language, but I think we have the idea.

We’re changing community of practice to communities of practice.

Oh, we’re standing changing standard platform to reference architecture. I apologize; I don’t have the contextual, I don’t have the location information for you all.


MS. KANAAN: And I think that may be it. Oh, and then softening the sentence about saying, I suggest in section 5, right before we go into that short list of next steps: below we note the areas in which NCVHS may consider focusing its attention. Is that qualified enough? Or is it too qualified?

Do you see where that is? That’s page 17.

MS. GOSS: Just say may consider in the coming year. It doesn’t need to say its attention.

MS. KANAAN: Below we note the areas — that doesn’t quite work, but I think I understand the concept, the principle here.

PARTICIPANT: It’s a menu. It’s not a recommendation.

MS. KANAAN: So I’ll just work on the language.

DR. STEAD: You have got to take out some of the detail in the seventh bullet.

MS. KANAAN: Yes, thank you, Bill. We are going to remove the reference to state and county.

MS. KLOSS: And there is another platform in item 4. And also, isn’t there — did we solve the data enterprise issue?

MS. KANAAN: Right, well, platform, I didn’t think we were going to — yes, it’s a different use. This was a major theme of the discussion. So we’re going to keep that platform maybe.

PARTICIPANT: Aligning platforms is different from a standard platform.

DR. COHEN: Where’s the word enterprise in here in the report?

MS. KANAAN: I’ll look for it, how about that? I do have a note to myself about that about perhaps changing the term data enterprise to something else.

PARTICIPANT: Data suppliers.

MS. KANAAN: Just say that it’s really the federal data supplier — I don’t know what terminology, or you were suggesting to not use federal.

PARTICIPANT: It’s more than federal.

MS. LOVE: Data providers, because I think of data suppliers in my world as the hospitals and health plans that are supplying the data to the state systems, and we use that term. So I think of the state and vital records and others at the state level as data providers, but it gets very mixed up, and terminology is not standard.

MS. KANAAN: That’s right. There are terms of art in different arenas, different industries.

PARTICIPANT: How about data suppliers earlier — I mean, we’re targeting the three groups.

DR. STEAD: We’re talking about all three groups. So data suppliers is only one part of this thing. So data enterprise doesn’t work. Got a little bit of a challenge. Narrowing it to data suppliers would just be one third of what we talked about.

MS. KANAAN: But I think that we were trying to focus on what happens at the policy end. I mean, these buckets, I have to say, are not perfect, and as Lee pointed out, they really don’t align perfectly with our worksheet, although I did — I can map it. For one thing, the worksheet also reflects a very interesting discussion the committee had last December about this whole idea of the federal hub was not really part of the original workshop.

MS. GOSS: I think that I heard Denise’s comment about enterprises to be more inclusive, not getting back to the data supplier aspect, because that’s really explained as in title sections, like at the top of page three, possible strategies for reorienting the data enterprises, making it more global, I thought was what I heard Denise say earlier.

DR. COHEN: That might work. Data enterprises or a data supply chain. So that covers the gamut. Which do you prefer, data enterprises or data supply chain?

PARTICIPANT: Is it a chain?

MS. GOSS: I don’t think it is a chain. I think it’s a whole bunch of stuff that we want to have a big overarching umbrella for.

MR. SOONTHORNSIMA: I think that is the toughest one to crack, enterprises.

MS. KANAAN: But we’re going to use the simple solution. Okay.

PARTICIPANT: So can we approve —

MR. SCANLON: Okay, we have a motion. What we will do is — I think we’re okay to take a vote, and what we will do is the motion would be to approve the report with the changes we’ve discussed for the chair to finalize and check so we don’t have to recirculate it again, and a cover note I guess as well, or do we just want to post?

DR. COHEN: I think we just want to post now, because it will be a summary of recommendations —

MR. SCANLON: That will come with the recommendations.

PARTICIPANT: That will be sent to the roundtable participants.

MR. SCANLON: So it’s really a summary. It’s a summary with sort of steps ahead.

MS. GOSS: So technically who made the motion and who seconded, not to be parliamentarian-like here?

PARTICIPANT: Nobody seconded.

MR. SCANLON: Yes, we need a second.

MR. SOONTHORNSIMA: I’ll second it.

MR. SCANLON: Okay, so I think we’ve had all of our discussion already. Any last words? So all those in favor, say aye?


MR. SCANLON: Opposed?

[No response.]

MR. SCANLON: Any abstentions?

[No response.]

MR. SCANLON: Sounds like we have an approval.


All right, nice work, everyone.

Let’s take a well-deserved break for lunch, and let’s see, we’re at 12:30 already. So 1:15, do you think? And we’ll adjust the time. Thanks, everyone.

[Lunch recess.]


Agenda Item: Standards—ACA—Review Committee on Data Standards. Charge and Expectations

MR. SCANLON: Let’s get started with the afternoon session. It looks like we have everyone back from the break. We will get started with the afternoon part of the agenda. We will start off with Walter and Ob bringing us up to date on standards and the ACA Review Committee.

DR. SUAREZ: Yes. Thank you. We are going to spend a lot more time later this afternoon in the Standards Subcommittee portion of the agenda talking about our work plan. I hope it is going to be helpful for the needs and for they to get a sense of what the plans are for our Standard Subcommittee.

The main item we wanted to cover in this section is the Review Committee. Just a very brief update to Dave and Denise and maybe to others. The Review Committee is a new function of the National Committee. It is a function that was created through a provision in the Affordable Care Act that called for the secretary to name a Review Committee that would review the current standards, the standards that are currently implemented in administrative transactions, standards, identifiers, operating rules, the whole gamut, but that are currently in place and are currently being implemented. Review them and make any determinations as to whether they are still meeting the business needs for which they were originally created and whether they need to be qualified, updated, changed, those kinds of things.

The secretary late last year designated through this provision in the Affordable Care Act the National Committee to act as the Review Committee. Under that provision, it is that we have this new function.

We created a chart for the Review Committee that is actually on our website that describes the purpose and the goals of the review committee and then the process by which a Review Committee is going to be achieving its purpose. And the process primarily focuses on convening and is consistent with the original provisions in the Affordable Care Act, convening a series of hearings to listen to the industry about the status of current transactions and raise concerns or issues about any of the transactions. And then also through any if, need be organizing purpose-specific, time-limited taskforces or working groups that will help address any specific details of any of the transactions.

The National Committee and the Standards Subcommittee, which is ultimately the subcommittee, is ultimately the one that will operationalize the Review Committee decided to start the process this year in 2015. We will be convening a first hearing of the Review Committee officially in June. We do not yet have the dates and we should be probably finalizing the dates pretty quick. I think we are looking at the dates that we originally had scheduled, our June NCVHS meeting that we then moved to May. I think it is the week of June 16, I believe. We are looking at holding this in a two-day hearing because of this being the first hearing of the Review Committee and dealing and addressing multiple transactions.

Basically, we are going to try to set the baseline for all the eight or nine transactions that we are currently under HIPAA implementing the health care claim. I am not going to say all of them because I probably won’t remember them all. But they claim and they claim payment and eligibility and enrollment, all those transactions. There is actually a total of eight or nine depending on how you count, coordination of benefits, for example.

We are going to look and see how each of those transactions is being implementing today, not so much how, but how well the standard that we are currently using is fulfilling the business need. And whether there are issues or concerns about the transaction, about the standard, about the operating rules for those transactions for which we have national standards for operating rules. We are going to do all that. It needs to be done in a couple of days.

One of the critical elements of this process is the way in which we are going to ultimately evaluate the status of those transactions. We started to develop some of the framework for the evaluation of the standards and all the components of the transactions. We are going to actually have a hearing in two days, Thursday, during which we are going to listen to testimony about the type of evaluation criteria that we should consider when looking at these various transactions.

We are going to hear perspectives from the industry about the type of criteria that organizations are currently using. Some of the standards of organizations use criteria to evaluate standards. There is a standard criterion that had been developed, for example, the Health IT Standards Committee evaluating standards for electronic health records that we can look at. We are going to hear testimony about all those.

We ourselves develop our own criteria for evaluating operating rules when we started to review and make recommendations about the adoption of operating rules. We have a whole host of pointers to evaluation criteria.

What I wanted to mention here and spend some time here is making sure that we all are at least in the same level of understanding of what we are going to be doing really with this review committee as a first stage in June and the evaluation process and all that. We want to make sure that given the timeframe that we have, given the limited amount of time and resources that we have, certainly we are not going to embark in some extensive cause benefit analysis type review of every single transaction and within the transaction every single standard and every single operating rule and all those things.

We are going to have to keep things at a very high level and really more importantly understand where things are with implementation of those standards and perhaps even more importantly, are there any issues today that are not currently yet in the process of being addressed through the standard development process for the next versions of the standards. What is the timing ultimately of this next version of standards for all these transactions?

Really, when you think of after the fact at the end of this process and once we are done with the first round of hearings in June of the review committee, what are the general characteristics of recommendations that we would be able to provide to the secretary. I wanted to make sure that we know and understand that we are really not going to get into inside the 837, this is the health care claim, in the X loop in this segment and this data element. We need to change or request a change of this because I don’t know how many of you have read actually the 837. It is about 760 pages long, including a very detailed preamble. There are many details about it of course.

What we really need to understand is most importantly are the transactions being used today first of all. What is the volume? What is the current utilization of those? We would like to hear in general terms what levels of adoption are used if those transactions exist.

We know, for example, that of course the health care claim and the claim payment are being used quite a lot. Hospitals probably are in the upper 99 percent of usage when it comes to submitting electronic claims and physicians are very high as well.

We know also that some transactions are not being used as much at all. For example, the prior authorization transaction, an electronic transaction to verify and to get authorization from a provider to a health plan, getting the health plan authorization to perform a particular procedure or treatment.

The actual transaction is not necessarily being used as much and we would like to understand why is that and what might need to be done about that transaction and the same with all the transactions. That is why we want to really organize this in that way and get a sense of where our potential issues and concerns about implementation. Volume is one big measure. What is a current volume of usage?

But then also what are some of the current issues with the transactions. Some of the issues might relate not necessarily to the actual transaction standards per se, but how the standards are being used. We want to know, for example, how many rejects people get when submitting a claim or submitting any transaction. Those are the kinds of things that we really want to get to.

One of the ultimate goals was really to try to get a sense of how much and ultimately this will be really very helpful to understand from testifiers. How much and whether any of them have an analysis as to whether the implementation of the transaction has saved them any money. Ultimately, we have moving to the administration publication to say what backing — I guess it was the proposed rules and in their final rule. When the rules were written, the estimates of savings were almost as much money as we have spent all together in the meaningful use program. You heard this morning, $28 billion. We were supposed to save $30 billion with administration publication, trying to quantify that even inside a simple organization is very difficult. We understand that that is probably not going to be possible. Really, how much have we saved?

But we want to understand and hear some statements about efficiencies achieved and gained through the implementation that otherwise would have continued to be done in a very inefficient way if not because of the implementation of these transactions.

Those are the kinds of things that we want to really look at during this hearing. Keep it at that level. There might be some statements from some people about — we really are concerned about this specific segment in this transaction. If we hear that, that will also be helpful. What we would probably have to do is move that information if it hasn’t yet been move and move that information the standard development organization.

One of the realities and why that is a good thing is one of the realities is that we face is that we have this standard that we have been implementing since 2012. It has been about three years now. There is a lot of development already in the next versions of the transactions. In that process of developing the next versions, there have been a lot of changes done because of the experience gained through the implementation of the current version saying we need to change this segment in the future version because it is not going to fulfill this need.

Some of the things that we might actually hear in detail, they might already be in the process of being addressed through the current development process, which is great. If not, then we will have a chance to bring it up to the development organizations.

Clearly, one of the things we want to make sure everybody understands is we are not going to be creating a process by which we have a parallel mechanism to the standard development process in terms of the actual content and structure of the standards. That is part of what we are going to be doing in June.

Of course, with the operating rules, we are going to be looking at the same kind of information of how the operating rules are being implemented. There are four sets of operating rules or four transactions for which standards have been adopting operating rule standards. We want to hear about those operating rules and how things are going with the implementation of those rules. That is the goal that we have.

We are, again, this Thursday are going to be hearing and listening to testimony about evaluating the transactions and what we can do as we prepare for this June hearing. And then we will be able to report back to the Full Committee probably virtually after the hearing, with information because we really want to communicate between now and June and perhaps even convene a session of the Full Committee to present the process that we will follow for the June hearing.

That is generally what we want to make sure we cover today.

MS. LOVE: Walter, can I just ask a question. I know you mentioned the eight or nine transactions, but I don’t know if the Pacter or the state reporting guides, the implementation are part of that discussion or outside the discussion.

DR. SUAREZ: They are outside the — we are dealing with the HIPAA-mandated or HIPAA-regulated transactions. The nine really are more like the claims, claim payment eligibility and enrollment, claim status, premium payment. There are a couple of other transactions.

Here are a couple of other interesting points. There are other uses of the transactions that have been in place for a number of years, including what you are referring, Denise, the reporting guide for collecting data for All Payer Claims Database Systems. That is one.

There are two more that are very interesting and we might — I would like to hear what your perspectives are, because two other transactions that have been developed and are being used are the enrollment and premium payment for the health care marketplaces. I do not know how much you have followed the news. We have a great experience in the second open enrollment process. Consumers were able to really — at a total of 11.4 million were able to do enrollment. This is a great front-end interface for consumers and all that.

The back end is a totally different story. What I mean by the back-end is once a consumer says send and enroll, the back-end system has to now exchange that information with a health plan that the consumer selected. The health plan has to receive that message and process it and then generate the information. That is supposed to be the enrollment transaction. It is not working very well to say the least, to put it mildly.

I think we will probably have an opportunity in June since it is an adoptive transaction, even though it is not a HIPAA transaction, but it is a transaction that is part of the HIPAA type of standards, we might have an opportunity to actually hear testimony about that experience and see what kind of improvements can be recommended.

I understand that even some — the usage of the actual transaction standard that was developed, wasn’t necessarily the one that was in place. There is a lot of interesting points about that specific use of that transaction.

There are other types of transactions besides the nine that we are interested in looking.

MS. LOVE: But that is where some of that administrative simplification comes into or our data suppliers.

DR. SUAREZ: It ultimately goes back to the point I think we were discussing this morning about the interoperability roadmap, because while we are charging along very forcefully to try do make sure that we have very good clinical system interoperability, information system interoperability in clinical settings, EHR to EHR kind of thing, I think we would miss the opportunity to bring along the way the administrative side, which has 20 years of experience in moving in that direction.

I am saying it is not like we are in crisis. We have achieved significant adoption of the standards and they have improved. It is a journey, as we always say. It is not a destination. But we want to make sure that we start to look at beyond purely the exchange of all these transactions and what are the other things that we need to look for in terms of interoperability at the administrative level. I think we have that opportunity really as a National Committee to advance that.

MR. SCANLON: That was a perspective that I think the provision of the statute was meant to focus on, to look at the whole portfolio of what we have been doing and what remains as an overall portfolio.

DR. SUAREZ: Exactly. That is the plan for the first two quarters basically that we are going to be doing this Thursday and then in June.

We are going to talk later this afternoon during our session about the rest of the plans and really look at what are all the various other topics that we want to discuss and look for because we have September, November plans and ideas and we want to discuss with the group and hopefully you all will be joining as well. That is what we really wanted to cover.

I don’t know, Ob, if you have any additional thoughts or comments or Terri, if you want to say a few things too.

MS. DEUTSCH: Just one of the things to consider is that there may be some sensitivities for some of the entities that are going to be discussing about divulging their degree or lack of degree of compliance. There is the fear that they are going to be held accountable and dinged on it. I think that just recognizing that. If they are comfortable in saying it, they will say it. If they are not comfortable, they may not say it. I am suggesting that it not be pushed too far. And in June, look at maybe a better way of getting that information.

MR. SOONTHORNSIMA: To that end, I was going to add one thing. When we talk about evaluation, it is quantitative and qualitative. Even quantitative, it is still very high level. I think you touched on that. It is unrealistic to get down in the weeds and say for each plan, each provider, how much money you saved. It is just not realistic to get down at that level. I think we just have to set that context with a right expectation and then weigh judgment on it as we go through the evaluation process. And not every transaction has all the measures that you would look for. That was not the intention of the —

DR. SUAREZ: I think it will definitely give us an opportunity to set a baseline really because the goal is to from this point on, continue the process of evaluating and assessing and understanding how things are evolving. At some point later on in the year or so, we might hear back from the industry that we are ready to move to the next version of the standards. There is going to be discussions about all that. This baseline will help us really move and understand and make a better decision at that point.

I think that is all unless there are any more questions or comments from anyone.

MS. JACKSON: I would just reinforce the role of the Full Committee in this activity. The Standards Subcommittee has taken this on and is the forward thinking face, but it is really the Full Committee’s activity. The committee has been meeting in Full Committee session. If there is ever an opportunity for you to listen in on webcast if you have not done that yet, this would be a perfect opportunity to do that for the Thursday session for the afternoon for the review committee evaluation and criteria just to get this under your belt as to what the nomenclature is, where people are coming from. We will get notes and everything afterwards. As you can see, from Walter’s description and the work plan, it is chugging right along with scheduling of time. We have a Full Committee in May and then the Review Committee is after that. You want to get things under your belt, try to listen in on webcast.

DR. STEAD: When will we know the date of the June meeting?

DR. SUAREZ: I think we might set it up later this afternoon if we have all the members. We can define it this afternoon.

MR. SCANLON: The discussion we had this morning about alignment and how these different activities interrelate and are heading forward. This is an important part of that. It looks at globally what we have been doing and how it relates.

MR. SCANLON: Let’s go to the next part of the agenda. Here, we are going to look at a very interesting approach to how do you — given the complexity of something like health systems, change, and the Affordable Care Act and all the different pieces and all the various parts of the puzzle, how do you begin to look at what the impact is?

Very early on the Department of Leadership and the White House asked HHS to look at the idea of how can we at least have a global macro-level view of what various parts of the health system and the public health system and so on. First of all, what parts do we want to look at and then secondly, do we have some measures we can follow. I won’t use the dreaded dashboard word. The idea was to pick indicators that we could look at and see if they are heading in the right direction. If yes, fine. If not, why there might be issues.

Our office and Suzie specifically were asked to set up this — to design and really implement this. We really had everyone at HHS participating, all the agencies in terms of the domains. I do not want to steal Suzie’s thunder. It really involved all of HHS and others to look at where we are.

Suzie is going to give you a nice overview of what this looks like. Again, think of this in terms of the concept and the approach and the framework. We are probably, as Suzie will say — we will be looking at the next version of this. We are looking for ideas that the committee might have about domains and measures and so on.

Agenda Item: Health System Monitoring Project — An Approach to Monitoring Health System Change

MS. BEBEE: I am Suzie Bebee. I work in Jim’s shop. I have been for about 11 years now. I am the overseer of the Health System Measurement Project. I will be referring to it as the HSMP. The objective of my presentation is to give you a status update. It was about two years ago that my boss, Dr. Susan Queen, the director of Data Policy, actually gave a preliminary presentation to the committee.

The website, which is what it is, provides a real high level of our health system. We have ten topics that I will talk about in a little bit. We have 44 measures currently. We can have a discussion about possibilities of adding measures.

The data is generally from HHS. It is evidence based so a lot of surveys. We display multiple years. We started with 2000. They are in graphs, tables, and maps. You can actually download and explore the data, but this is not raw data. These are percentages and data that we have received from the agencies.

As Jim said, it was a White House request. As we always do, had guidance from a work group about the measurement and the evaluations. That generates a limited number of measures, those 44 measures, that give that broad overview of the health care system, look at access, quality, and cost and other things, are reliable and valid, and they align with HHS’ strategic planning efforts. I have a colleague who oversees the HHS strategic planning and she and I are always talking about ways that we can leverage the HSMP website for her internal strategic planning website.

Again, these are the sources. I am sure not surprising to you. You have a handout, which is a spreadsheet, that you might want to refer to. It gives a little bit more information in a matrix fashion. I will get mine and hold it up. It looks like this. This has the ten topics. It has the measures. It has the year of the most current data. It has the datasets because not only do we have ten topics, but we also have 44 measures and we have over 350 datasets that we repeat those 150 times. It is rather comprehensive. The sheet also has the data owner, the agency. You can refer to that, as you need.

Since we do not have the Internet here in the room, I have taken some snapshots. This is actually the home page for the Health System Measurement Project. It talks about the project. It is in transition, which is why the topics don’t actually line up. We are thinking of adding more icons. You can see the ten topics, the access of care, cost and affordability, coverage, health care workforce, health IT, innovation, which right now is about FDA and drug innovation, population health, prevention, quality, and vulnerable populations.

Also, you can see that on the website, we have a carousel right now. We are not sure we are going to keep that design. It features four of the measures that we have chosen to feature on the front page.

We also have access with a little bit more information to the topical areas.

I wanted to show you an actual site of a page for a topic. In this case, it is access to care. You can see the access to care at the top as the topic. And then there are different lines that you can actually open up. In this case, there are five different measures. And within this particular topic, access of care, the one I have displayed is the percentage of people who have a usual source of medical care. If you look across — this is going to be updated this year to 2013 data. If you hover over any of the columns, it will give you the measure.

This is same topic, but a different measure. You can open these as you have an interest. This one is about having difficulty in seeing a specialist.

I am back to the first measure, usual source of medical care. Within each of these measures, you can get more detail. You can see the arrow that points to see that measure in more detail. This is what happens when you open that particular link. This will give you more about the metric calculation, even talk about the survey, even to the detail of the question, in some cases, how it is asked within the survey. It gives you data source link.

What I wanted to show you here is that ontology where you have the actual topic then down to the measure and within those measures, in this case, the specific source of ongoing medical care, you actually have different ways of slicing and dicing of looking at the data. There are the national summaries, race, ethnicity, age group. You can look at each of these and they are visualized as you have seen in the prior slides.

When you do open that data source link, in this particular case, it went to the CDC, the National Health Interview Survey.

Another measure underneath the source of ongoing medical care. I wanted to show you the coverage overview. You can see where you can actually link on the different types of coverages and then that will change the actual display of the graphic.

If you want to actually look at the data, you can either explore it or download it. When you go to explore, you can see what is behind the spreadsheet essentially behind what the display is.

Another topic is cost and affordability. It is similar to the care topic. This has five measures within it. You can see, for instance, the measure and more detail about the percentage of people with delayed care due to cost. This is just simply showing you that particular detail.

Again, I wanted to show you a different way that we have displayed the measures. For this particular measure of delayed care, we can go to the state level. You can see that we display a map. You can hover the cursor over any of the states. You can also vary the data from 2001 to 2012.

Within the website, we offer a user guide, also the glossary. It is rather comprehensive I think the user guide. It shows the actual framework that we use to topic measures and data sets as I have been describing them. And of course, a glossary is just a simple A through Z, but very helpful.

As Jim said, we are enhancing the website. We are currently in the first year of our second round of improvements. We have remained with only the 44 measures, but we can certainly expand. We are doing a lot of discussion internally about how to display other data whether that is mental health data, whether that is ACA data. We are having those conversations now. We are doing some prototyping with improvements to how to show that data.

Our conversation today I would hope would not just be questions. I certainly can answer any questions, but also any comments, any suggestions that you might have with improving the website.

MR. SOONTHORNSIMA: Thank you, Suzie. You mentioned the sources come from HHS, mostly Medicare and Medicaid data. Is that correct?

MS. BEBEE: No. We have surveys, NCHS.

MR. SOONTHORNSIMA: But you don’t have commercial. For example, you don’t have commercial payer — claims.

MS. BEBEE: We do have HCUP.

MR. SOONTHORNSIMA: But there is a lot of missing data still to give that broad national level view.

MS. BEBEE: You are right. We have been discussing that as well. Most recently about where we can get more data, data that is more current. We are discussing that internally.

MR. SOONTHORNSIMA: But perhaps with the ACA because plans are having to send some data back to the government in terms of their enrollment and claims in order to get subsidy and so forth. I am not sure at some point that data would be coming to you to see a much richer or much broader set of enrollment and claims and experience.

MR. SCANLON: All of the enrollment data for ACA that goes into — from the federally facilitated — that are reported through the website — they go to CMS to the insurance office, not identifiable form. They are tabulated. They are held pretty closely.

But we have been publishing already the enrollment figures in the aggregate for the two open enrollment periods. It is a good possibility we would be adding enrollment to the next version of this website. It would be the data from that enrollment form. That would be the 11 million. We would have to see. We do not have the state data. The states that run their own record place — it is a good possibility we would add that.

HHS has already published the enrollment figures for the first two enrollment periods. You could look at how many people were enrolled, what was the middle level, what was the premium. We have it by state or zip. There is a good possibility we would put that up in the next version of the HSMP. That would be the administrative data that I think people would like to see.

MR. SOONTHORNSIMA: Would you have access to the risk adjustment data?

MR. SCANLON: It is reported.

MR. SOONTHORNSIMA: It is not available yet.

MR. SCANLON: Not yet. But when the risk quarters and so on. It is administrative data, I think. We would have to see what the policy is in terms of — the ACA had some provisions that we couldn’t make that some of these things couldn’t be made available. We will have to see what the rules would be. If there were an access policy, we definitely would be looking at that.

There are other areas, I think, on the public health survey. When we first developed this, we had to — folks wanted to keep it relatively simple. We had ten domains at the beginning of ACA. Folks wanted no more than five measures within each of the domains. We could revisit. We certainly have some better measures for some of the areas.

MS. BEBEE: I would suggest that if you want to look at this and the slides and even go out and visit the website, the link is on the last slide, and offer up more comments as we progress the next day or two, that would be great.

MR. SCANLON: Any ideas you have send them to Suzie. At the moment, we are looking just at regular — any ideas for where we go next.

We will probably be using a similar platform, right Suzie, in terms of the visualization?

MS. BEBEE: Yes, we are improving all the time. We are in transition going from one platform to another in open source. We are in the process of a redesign right now.

DR. COHEN: For the state level data that come from surveys, are they NHIS state estimates or are they BRFSS estimates for delayed care and insurance coverage?

MS. BEBEE: I am not the expert on the survey data. I am not sure, Jim, if you know the answer to that. I can certainly get the answer for you.

MR. SCANLON: We have states. What we have tried to do as a general policy was to make it as granular as we could. At the first level, the more general level, we have what is the national estimate of the number of people by — that have the usual source of care. We get that from the Health Interview Survey largely. Then we would try to — we try to do this by geography to the extent we can. I am forgetting how many state estimates we can now make from the Health Interview Survey. But we don’t have all 50 yet I don’t think.

DR. COHEN: The BRFSS. You can make them — you will have to deal with the issues between HIS and BRFSS, but without using BRFSS, will give you the opportunity to make a lot more state level and actually sub-state level estimates for access to care issues.

The other general comment is I don’t whether you thought about including confidence intervals or some measure of dispersion around point estimates. It is really depending upon the audience being able to turn on or off confidence intervals so people can really get a pretty quick estimate of differences rather than just looking at point estimates particularly for subgroups in the population I think is a really powerful kind of thing. You really do not know what the variation is and differences are. Just simple confidence intervals or standard error estimates will allow people to do that. I bars on graphs are really helpful and are easy to look at visually. You can actually ask the user whether they want them on or off and certainly around the data that you download having standard errors or confidence intervals I think is really very important.

MS. BEBEE: You are just reinforcing an internal conversation we have been having. Thank you.

MR. SCANLON: Other questions for Suzie?

DR. STEAD: I will show my ignorance. Why 2011 and 2012 for almost all the data as the latest date? Is that because it is all survey-based data?

MS. BEBEE: I think that is a good response for me. We are also looking at that and having an internal discussion about other sources where we could get data that is more current. But we have decided that this should be evidence based. It only is available as to when it is released.

DR. STEAD: Understood. I guess as you think about new strategies, if we use the evidence-based method for assembling our systematic survey data, which gives us one type of view of the country, it might well be that you could then drill down to other data sources that would let you see key trends with current data where you don’t actually have, if you will, the full census that you get from the survey.

MS. BEBEE: That is a good suggestion. I will take that back.

MR. SCANLON: I might point out that in this case, we are the users of the data as our community data users and others are. We experience the same frustrations as anyone. It gives me no pleasure to show 2011 data in something like this. That is history. That is not monitoring. Our effort is going to be to try to get the most recent data to populate. Again, we are trying to close that data collection, data availability cycle with a number of these things.

MS. BEBEE: We have that conversation frequently. Thanks, Bill. That is a good suggestion.

DR. ROSS: My question, Suzie, is about just a quick look at the website. With some of the measures, I quickly looked at the health IT measures. What are listed are percentages. For example, percentage of hospitals that have adopted EHRs at the basic level. Have you given any thought to putting that in some kind of a population base? I am looking at the numbers. Maybe it is the dates, but this is 2013. Roughly 60 percent of hospitals. But what proportion of the US population does that represent? It seems to me that what you want — the 70 percent roughly. Seventy percent of people who live in urban and suburban areas are probably close to 100 percent represented by institutions that are automated. This struck me initially as quite low, but that is just such a raw number. It does not speak to a population — actually understand what is going on.

MS. BEBEE: Thanks. That is good.

MS. KLOSS: How are you tracking and evaluating how that information is being used? I am just curious as to what uses are being made of it and how that is helping to move it along.

MS. BEBEE: Since the presentation two years ago, we had a usability study. We were looking at the data that is available to us as to who is using it and how often. I do not have those numbers right now. I can certainly get those for you. But the initial part of the website when it was initially put together and made public, it was more readily used than it is now. We have within the current contract, a mechanism so that we can raise the awareness of what this website is and what it does and what it can do. We need to do more in that regard for sure.

DR. CORNELIUS: I have a question that might seem a little tangential. I am asking myself how is this different from NCHS’ Health Indicators Warehouse website.

MS. BEBEE: Again, I am not an expert in that regard. We do not represent the data that they necessarily do in the depth that they necessarily do. This is at a much higher level. Less is more in this regard.

MR. SCANLON: The other thing, Lee, is remember the data warehouse is really — the audience there is developers. It is folks who are going to take the data and convert it to other uses as well. It is not an end consumer level just yet. This was meant to be. It was really meant to keep it to just a few and to keep it up to date. This is meant to just focus on these measures.

There are all sorts of other indicators. There are full reports on many of these. But just to sort of have a glimpse of are we heading in the right direction. This is what this was intended for.

MS. BEBEE: Before I became overseer of the site, there had been discussion about this site targeting researchers. This really is not a website that researchers visit. The data is not that type of data that researchers are interested in. We really had to transition over to the type of audience that we have. It can be graduate students. It can be people out in the press that are interested in getting the data quick and then explore it further in more depth. This is a website that is great from a high level. It is not meant to be anything more than that.

MS. GOSS: Building on that, this is really informative and I can see from some of the educational efforts that need to happen within various segments of the industry, having a high-level view is important. I am curious about the long-term plans and support for this. One of the things I don’t want to see us do is get a great new resource that we can use to help us with comparing our states to the national trends or helping people understand the real scope of the health care continuum issues and have this go away. I am not look to you, Suzie, on this one. I am going to look to you, Jim, and say if we are going to do all this work, do we have a way to ensure that we can continue to evolve it?

MR. SCANLON: The Federal Government operates year to year. I can assure you we have enough for this year and next year, but after that, it depends on the resources. But there is no reason why we wouldn’t. This will not be the new site. This will not be where you first hear about enrollment numbers or uninsured. That will be through our other means. It is not meant to be history either. But it is meant to be a place where folks could look. And even within HHS, if folks want to see something beyond one number they just saw on the news, this is the place where you could look and say how are these things going. It is trend data as well. Obviously, the more current we can make it, the better.

MS. BEBEE: And we are creative internally all the time with how we can increase the value of this particular website. We have been successful so far.

MR. SOONTHORNSIMA: Suzie, you mentioned earlier that you work very closely with the person on the strategic side of HHS. When you look at the 44 measures, are all of them aligned to some sort of strategic priority or certain subset of these 44 really tied to —

MS. BEBEE: There was no connection in the design four years ago. We are talking about doing that going forward.

MR. SOONTHORNSIMA: Maybe that is really to drive sustainability. Which of these measures are really going to be more transformative in terms of policy, programs, or what not. Otherwise, it is just another data point.

DR. ROSS: Some of them you just want to know like the technology stuff. Some of them are just to inform us. Have we hit saturation point, for example. People want to know that. Let’s stop investing in new things to push more adoption. Let’s move more towards quality or whatever. It is both.

MS. BEBEE: We see the loop that that actually is. We do have that conversation. Just as a reminder, the strategic planning site is internal. The challenge for us it making sure that we convey that transformation of what is being done internally strategically and is displayed on an external site in the right timeframe.

MR. SCANLON: One of the uses we found is that as some of the initiatives are started or folks say we have done that first stage, now, what about this or that. What kind of measures could we use and what domain is then? We often start here with what have we — because it was a lot of work originally in the conceptualization about what really matters. What would you want to see in terms of where the needle is? We often look to this site as the place to start sort of with measures for anything new. This whole idea of measure alignment, as you know, was a big deal. We still have a long way to go in terms of quality measures and measures for all of these other things. But at least we are looking to the same source for what kinds of measures are available.

DR. MAYS: One other things and this may be pushing the envelope a little too much because this in and of itself was a very demanding undertaking we can tell is whether or not it would be possible to also add the VA, the Department of Defense and the Department of Justice data. When you are talking about health systems, there are things that we truly will learn if you have the VA data there, the Department of Defense data, which gives you the military across the various groups and what happens when one is deployed and all this other stuff. They are very interesting issues that really affect what we need to do. People have been begging for the Department of Justice, which of course, under the Affordable Care Act, is even more involved now with making sure that there is health that is going on. I don’t know if it is possible.

MR. SCANLON: We can look at it.

MS. BEBEE: Do you have any examples that you would find a measure of interest across any of those? Or if you want to think about it and let me know, I would appreciate that.

DR. MAYS: I have to see what I can say because I know some of this from — I sit on the IOM board of select health. We have been talking about this and trying to get some alignment. I just have to know whether I can — I have to look at the notes.

MS. BEBEE: Technology. It is not new news that we can do a lot with the technology. It is the policies and what we can offer and display in a timely way. Whatever you want to offer, Vickie, I would appreciate it.

MR. SCANLON: It is what data is available and if the owner is willing to provide that data.

PARTICIPANT: If they are interested.

MR. SCANLON: Some of them are interested. There are formal gatekeepers that we need to get approval from. At any rate, we started with these ten. We probably had, Suzie, at least 20 measures per domain and then everyone said five. We really drew those, if you remember, from the National Prevention Strategy. We really did not start from scratch. We looked at all the measures that people currently use to monitor — prevention or population health or quality and then those were the ones — this was kind of a consensus process. It was not one individual saying let’s do this. We really worked it through a consensus process.

MS. LOVE: I think it is great. I did not know it existed and now I do. I am delighted and good work. Is there overlap with the National Quality Report? Are some of these measures in both?


MS. LOVE: And then you could start with total cost in these other segments that Vickie brought up because we cannot quantify that very easily on the ground. What is the total cost of health care expenditures? That would be a nice place to start with some of these other data sets.

MR. SCANLON: We do have national expenditures and we have some affordability, but they are the typical national health accounts measures, but we are interested.

MS. BEBEE: Please take a look at that spreadsheet. It is very easy reading and quick and then tell me, Denise and others, anything that you think could be added. I would appreciate it.

MS. JACKSON: Anyone on the phone? Questions? Comments?

MR. SCANLON: I think we are going to return to — we are going to return now to standards as Walter gave you a preview earlier and Ob about the work plan and future work being considered in the Standards Workgroup. Ob and Walter, I am going to turn it over to you.

Agenda Item: Standards — Projects and Work Plan

DR. SUAREZ: In the agenda, we are — I think what we wanted to do during this time was to review our committee’s work plan and help define really the next steps beyond, the second part of the year. Maybe to start, it would be helpful just to briefly review the agenda for Thursday’s hearing so that you all are familiar with what is going to be done in some more detail. Actually, in the packet, I think about five pages down the road or three pages down the road is the beginning of the agenda for the hearing. I will spend a few minutes on that just to make sure that you all are aware and familiar with what we are going to be doing.

The first part of the hearing we have divided into two, the morning session, which will focus on reviewing proposed operating rules for four different transactions. I will come back to that. And then in the afternoon, we are going to listen to a completely different topic is the evaluation criteria that I mentioned earlier. Those are the two main topics.

Going back to the morning session and some background for David and for Denise, one of the functions of the National Committee is to review and recommend standards. That includes the whole gamut of standards whether it is new standards or changes in standards for transactions like the actual implementation specification or changes in code sets, changes in identifiers or updates, changes in operating rules. Those are the four core components: standards, codes, identifiers, and operating rules for the most part.

Within the operating rules, this is a new level of standardization really. When you think about the transactions, we have all the time being implementing for many years the actual transaction of what we call the standard, the implementation specification developed by the standard development organization. In the case of the health care claim, it will be the 837 implementation guide.

But in the Affordable Care Act, there was a provision to create and to adopt operating rules for each of the transactions. These operating rules are primarily business rules that will help achieve the transactions themselves, the implementation of the transactions in a more effective way.

The process that we have followed with the operating rules is no different from the one that we have followed for the adoption of and recommendation of the new standard, which is basically work with the authoring entity, the entity that develops and authors the operating rules to have them work with the development of the operating rules and then bring those back to the National Committee. We would hold hearings on the proposed operating rules. Have a presentation of the operating rules and then have testimony on the operating rules.

And then through that, we gather basically the feedback that we would need in order to make a determination as to whether the operating rules are to be recommended to the secretary.

We have gone through one or actually two rounds of review of operating rules, the first round with two transactions: eligibility and claim status. That was actually almost two and a half years ago or so. Those were reviewed and adopted, basically, reviewed by the National Committee and recommended to be adopted and they were adopted through regulations by the secretary.

The second round covered electronic fund transfer and electronic remittance advice so the payment part of a claim. Those were four total transactions for which — operating rules allotted.

And then this next round is looking at four additional transactions. The actual claim, the health care claim so what are the operating rules to be adopted for the health care claim. Prior authorization. This was the other transaction I was mentioning earlier that not a lot of people actually implement the standard for this transaction. But we still need to look at operating rules. Prior authorization. And then enrollment transaction. This is the other transaction I mentioned earlier. It is the transaction used by employers to enroll people in health plans. And then premium payment, the payment made by the employer to the health plan. Those are the four transactions for which operating rules are being recommended.

The agenda looks at first hearing from the authoring entity, the operating rule authoring entity, which is CAQH CORE. And then we will have a testimony from different stakeholders, from the health plan perspective, the provider perspective, the public program perspective, the standard development organizations and other perspectives, employers, clearing houses, practice management vendors. It is a very complete set of reviews.

We have received from the operating rules authoring entity the draft of the operating rules. They have been made available to the community to be reviewed as well. Of course, in the development process, there were involvement from many stakeholders. The hearing is going to focus on those four transactions.

At the end of the two pages of the agenda, there are the questions that we are going to be — we have asked the panelists to address. We have some questions for the operating rules authoring entity basically talking about what are the actual operating rules, sort of a review of those, and then what is the process for developing them and a few other questions around that. And then we have some questions that we ask the industry to address with respect to these operating rules. That is the morning session.

This is our third process for reviewing and recommending operating rules. We have a template for evaluating those operating rules, which we developed with the first round. We spent a lot of time in preparation for that initial round. We have a very well developed, as we used it already, tool for systematically evaluating the operating rules. We will be using that in this process as well.

After the hearing, we will be then — in addition to the testimony, we will be reviewing all the testimonies and we expect to be able to make recommendations to the secretary with respect to whether to adopt the operating rules or what would need to happen next.


DR. SUAREZ: CAQH CORE is the organization body. It is an independent organization formed actually a number of years ago as part of — actually, it was formed with the support of the health plan industry, but now is an independent organization. It stands for the Committee on Operating Rules and Efficiency. I think that is what the E is. C-O-R-E. And CAQH is Council for Accountable Quality Healthcare.

PARTICIPANT: Committee on Operating Rules for Information Exchange.

DR. SUAREZ: Thank you. This is a committee actually that was developed — was created to help improve the business level of exchange. We have the standards. In addition to the standards, we needed to get some understanding and standardization of the process itself, the business interaction between organizations. That is what this organization developed, what we call operating rules.

That is what the hearing will be about. We expect to have a very lively discussion about various operating rules. We will again post-hearing we will have a discussion of the subcommittee, using our criteria and using our feedback from the hearing, make a determination with respect to recommendations to the secretary. That is the first part.

Let me stop there and see if there are any questions about that.

MR. SOONTHORNSIMA: Just to clarify, these operating rules have not been adopted yet. The industry obviously is very interested because every time you have an operating rule, you have to spend some resources and money and people on systems to roll that out. And oftentimes it takes years to adopt them. We are very interested in what the outcome would be.

DR. SUAREZ: That is a very important point. There is of course now a requirement that we are waiting to see and hear the final regulations on that calls for certifying, health plans certifying that they are in compliance with all the standards and including these newer operating rules once they get adopted. As a health plan organization, we would have to look at this and make sure that if they get adopted and they get adopted in regulations and mandated and used, we meet them. That is part of a very significant — a big importance of this set.

MR. SOONTHORNSIMA: This would segue very well into the Review Committee work. If you think about Review Committee work, it is really after the fact. Coming back and review. Did we achieve the goals? This is why it is full circle. I think we are at a good point as a committee to have this overarching view before we implement anything new. Guiding principles in terms of adopt ability, adaptability of the industry, the cost benefit and so forth hopefully long before the law is written.

DR. SUAREZ: It is very critical at that point because we are now moving along two parallel processes. We are going to leave those two processes at the same time. One is we are responsible for reviewing and adopting new standards. We have to have a series of criteria for new standards. Later this year, we will probably hear again about attachments and that is a new transaction, new standard. That is new. New standards. We have criteria to look at that.

And then at the same time we are going to look back and review for those transactions and standards that have been adopted, how are things going and evaluation of those. That is a very good way of looking at it, the two processes that we are now going to be following.

The Review Committee scope of work is the review back, look back. And the Standards Subcommittee responsibility outside of the Review Committee is to look forward and look into the future what are the new standards, what are the new transactions, new areas of standardization that we need to look for.

Then the second part is really the Review Committee. I think we went through that. We are going to hear from different organizations including the DSMO. I think at some point we actually had a primer for all the different acronyms. DSMO standards for the Designated Standard Maintenance Organizations. The Designated Standard Maintenance Organizations is formed by six organizations, three organizations responsible for the transaction standards so X12, NCPDP, and HL7. Those are the three basic bodies for national adoption of standards.

And then three data content committees are how we used to call it. Probably still are. They are the National Uniform Billing Committee or NUBC, the National Uniform Claims Committee, and the Dental Data Content Committee, the Dental Data Content Committee of the American Dental Association. Those six groups form the DSMO. They are established to hear from the industry about issues with implementation of standards. We are going to hear their evaluation criteria.

MS. LOVE: And you will hear from public health too or just the industry?

DR. SUAREZ: We will hear from — actually, public health. We have some very interesting developments that we want to talk about for the later part of the year. We have the whole gamut of perspectives about this evaluation criterion.

I guess I said at the end of this second part of the hearing the subcommittee would go back and review the discussions and then formulate the strategy for the evaluation that we will then bring back to the Full Committee between now and June. That is why I am saying we will have to do via email and then some potential telephone meetings just to review and discuss it. That is the hearing coming up.

As always, we have a lot of testifiers, but it is all great to hear. First of all, I have to say all the credit goes to Terri who has helped us so much putting together this hearing and it has been an amazing process to coordinate so many people.

But I also want to say that the response from the industry has been amazing as well. People have been really almost literally jumping at the opportunity.

MR. SOONTHORNSIMA: I definitely echo that. Terri Deutsch has been instrumental in getting all this stuff together at an impossible pace and timeframe. Thank you, Terri, very much.

DR. SUAREZ: Any other questions about the Thursday hearing?

Then comes the next work plan part, which are the additional products. I am going to actually — I am going to open — we have materials, tables that have the work plan that actually cover the standards’ activities. I wanted to just cover a couple of elements here.

Let me just go through a couple of slides. This actually talks about the Review Committee activity. I want to go to the slides that talk about the other topics that we are going to be covering. Population health. Back in November last year, we held a hearing — actually, not last year, 2013, we held a hearing. In 2014, we issued a letter to the secretary making some recommendations about public health and population health standards.

The first set of recommendations focused not so much on the standards themselves, but actually on the public health information infrastructure and really recommending a series of actions to enhance and advance the public health information infrastructure.

Having done that, what we wanted to do this year was actually go back to looking at the actual standards for public health electronic messaging and review the state of affairs of those standards. That is one topic we wanted to cover.

We know that there is a number of areas where there is already adoption and use of electronic messaging standards for public health exchanges, including vital records so vital and health statistics, immunization data, public health reporting events, public health laboratory data, and other areas.

Originally, the goal of the first hearing we had was to hear about the status of that. We heard a lot more about the importance of trying to enhance the public health information infrastructure itself first.

Having done that and that set of recommendations, we want to now really look at the standards themselves and the status of those standards and opportunities to help advance those. We know that through meaningful use, for example, there has been a push to adopt some of those standards for things like immunization data and public health laboratory reporting and syndromic surveillance reporting and disease registry, specialized registry reporting and things like that.

We want to really take a step back and look at the larger picture of all the different areas there could be advancements in the adoption of electronic standards for public health messaging. That is one topic.

We have not yet aligned it in which time during the rest of the year we would do this type of activity. But I wanted to bring it up as a topic. The plan again is to organize a second population health, public health hearing that will focus on the standards. This will be then in partnership with our population health and privacy and security subcommittees.

This other one is actually a second topic that we had thought. We have not really done much more work about it. It is the possibility of organizing a workshop on population health management and really look at where things are with respect to population health management as truly a foundational component of health reform and the opportunity to exchange experiences throughout the system. There is population health management being done by many different organizations in different ways. There is a lot of opportunities to share experiences and best practices and things like that, and certainly the concepts of standards behind it. That is another possible topic. Those are two specific topics on the population health, public health arena.

MR. SCANLON: Walter, can I ask — on population health management, are you referring to the plan — population health management within a plan or the community at large?

DR. SUAREZ: We are talking about — a little bit of both. We are talking about population health management done by health plans, by care systems, by ACOs, by community health organizations, by different groups. It is really in that larger context.

MR. SCANLON: Some form of management and accountability.

MS. LOVE: We were just over here saying there is big P, system wide, and then little P, population management.

MR. SOONTHORNSIMA: I think we are talking about little P. We haven’t honed in specifics yet.

DR. COHEN: The focus would be on the plans in the medical care management or the members of plans.

DR. SUAREZ: There are the members of plans, population health management. There is a member — for example, ACO, responsibilities of population management or care delivery management. And then there is —

MR. SOONTHORNSIMA: I would stick to members of plan and attributed members to an ACO. That is a finite set if that makes sense. Because if you get beyond that, it is no longer —

DR. SUAREZ: There is the other part of it, which is the public health management. The population health management however we define the term that is done by community health agencies and by public health agencies.

DR. COHEN: It is a very slippery slope in defining population management. I think the more explicit you are, the better opportunity you will have to focus on those critical issues. If you start talking about state agencies, cancer registries, STDs, that is population health management, but I don’t know that we want to go there for the first round.

DR. SUAREZ: That is a great point. It is really defining the scope in a much more refined way.

DR. STEAD: This conversation brings me back to where we left off at the beginning of December. I love this. It is where I live. My question is whether as a Full Committee, we actually need to step back and do some form of I hate to use the words strategic planning process because that is too rigid for the pace at which we live. But get some clarity around the problem space that we are trying to deal with as a committee that is looking out say 18 months to 5 years. If we are saying that a lot of the world is constrained by 0 to 18 months, then we might be in that intermediate space and still be not totally abstract.

And then we would be able to point to this is the part of the problem we are trying to talk about now. I think this is another thing we can do. This is the component of it where we need convening activity around the standards — but against a common frame of some sort. This is the privacy and security implication. This is the population management or public health.

It sounds to me we are dealing with the things we ought to deal with Thursday and they are important. We are clearly going to have the new responsibility of the review committee. I wonder whether the next thing we should be trying to layer into the plan is an extra time or somewhat that we can actually be working as a committee around what the planning frame looks like that drives our 2016 plan.

DR. SUAREZ: I think that is right on point. I do think that more and more we are finding a topic — and when you look at this table, we actually added the first row as a committee wide and we are finding that more things are at that level now that really need to be discussed at that level and defined at that level. This is one of them actually. It comes from one of the subcommittees, but it gets elevated as a committee-wide activity that we should consider.

I think what we need to do is I would support very much what you were saying that we need some sort of strategic planning session to really look at the landscape of activities and plot this in the right spots where the opportunities are. As you will see from the list, there is another set of things that we are looking at that are somewhat standards domain type activities that are also higher up in the structure and they just happen to come through the standards, but it doesn’t mean that is the domain only.

DR. MAYS: Walter, I just wanted to follow up on something that Bill was saying. Bill, it is an excellent idea, but for a different reason, which is some of these items some of us have to get up to speed on. I understand the whole population side. But I am concerned that if I do not understand your standards side well enough that I am going to go with what you see in your vision. I have a feeling I know the other side better. I am trying to understand. It is just like in terms of doing the privacy one. It is like getting up to speed and then you realize what you can bring. I think we have to think about that sometimes that, yes, the person who is driving it, they drive the agenda. But what we learn from the convergence is the creativity that gets brought. But on this one, I am kind of lost. I can do almost everything except the standards stuff. I do not want a whole tutorial, but I want to figure out how to make sure I can represent population health well enough. I don’t know what to ask for. What Bill is saying is there. I was sitting here thinking how am I going to learn how to do this one because I don’t know what to do. I don’t know. Figure out what the tutorial is so that we know what standard issues are and then we can help you.

MS. KLOSS: I would echo that and hope with time we freed even on tomorrow morning’s agenda that we will really use that to come back to this consolidated work plan. I had planned later when the Privacy, Confidentiality and Security Committee meets, I took another stab at our portion of that work plan. While I think it is a little better, it is spread out a little bit more, I still have concerns layering that work into 2015 and early 2016, not only because of capacity of committee members, but also staff. I think that probably before we adjourn tomorrow we really need to look at that consolidated plan, which doesn’t answer the larger question of what fits in that intermediate space. But it does give us a clearer sense of what is realistic in the short term.

MS. GOSS: I agree with a lot of your remarks there, Linda. In thinking about what you said, Bill, I am starting to envision something along the lines of we have large categories of objectives with the flavors that boil down into the type of work plan that we are currently looking at, but it is sort of — I don’t want to use roadmap. I really do. I don’t want to use strategic plan. We really have a 2015 to 2020 strategic plan from the feds. We have an interoperability roadmap with a whole bunch of other stuff behind that with HIPAA and HITECH. What is it that we can actually do and be successful in broad strokes that are in English and then give us all of our little detail widgets that we want to work on across a one, three, maybe five years?

We started this conversation, I think, Bill, when you and I first joined this committee. They were already starting some of this discussion. I am looking for a two-pager, high-level, what we have all talking about philosophically that we can then have all these detailed work plans behind it because it is really hard to know when you start and stop from each meeting where you really need to hone your energies and where you need to focus to deliver to keep the ball moving.

MS. JACKSON: It is the National Committee’s storyline, which we are really trying to follow on. This has been an experiment of working the subcommittees in blocks and then totally in plenary and now the dynamics of your work as Bill and Walter are really looking at. There is a storyline that is going through. Everyone is trying to grapple because you are no longer in your safe little sections. There is so much convergence. There is much alignment.

They tried to have the Executive Subcommittee retreats in the spring to pull some of this together. At this point, the Full Committee is a retreat. We can look at some time in April. We are already in March. And then by June, you have the meeting. In May, you have the Full Committee meeting. We might need some communication time somewhere before the May meeting to look at some of these pieces and pull them together.

DR. COHEN: Could it be part of the May meeting? Could we extend the meeting for a day and use a day for a facilitated retreat for strategic planning?

MS. GOSS: I would propose even if we go down that path, Bruce, that we need to have some staff support. We have talking the same talk for five meetings now. I would think that we should be able to pull together at least an executive level, a starting point for us to discuss.

DR. STEAD: I was actually thinking maybe we would load this for the fall. Realistically, if we got the May meeting and that leads us into the Review Committee, if we could get — and we are trying to get the recommendations out of population health, one of our options would be to clear the fall and to drop in a designated planning thing in addition to our later fall meeting. We could have a planning thing and then we could — that could lay out the working material. Then our later meeting could close down the 2016 work plan, flowing out of that.

I think in many ways we have to decompress and focus — seem a little bit contradictory.

MR. SCANLON: The other thing I would emphasize just in terms of the overall plan, plans are what you do while life is occurring. Plans have to be nibble. You have to be able to change. Writing down a plan doesn’t mean you are necessarily going to get everything. Even with our strategic plans, that is why we write them at certain levels. Planning helps you think about where are our priorities now. We learn something more and maybe we can switch. Keep that in mind.

Debbie, remind me. We did have a planning — I wouldn’t call it a retreat. You have to be careful. Retreats get structured and then you are doing what the facilitator wants you to do rather than talking about what you should.

But I think this idea that we take a nimble approach and a flexible approach. The plan and the work plan are there to plan for. We are not going to have a whole lot of resources. I have to be honest. We have to rely on what we have and using our best thinking and working smarter. Again, we really value your time and the staff’s time and we have to spend our time where it is going to make it pay off. We cannot do things because somebody — there has to be an idea that we have a client. That there is something to do that would be a contribution. That is sort of the way we will have to plan.

Again, I do not want to give the false impression that we are going to have a lot more staff or a lot more dollars. Where we are now is pretty much where we are going to be. It just calls for nimble approaches and plans that are fairly flexible.

DR. SUAREZ: One suggestion actually is sort of in the line of what Bruce was saying. In May, what are the action items? We might have the letter coming from our hearing on Thursday. I am not sure what other action items. We could actually use a May meeting to do that type of planning activity. Retreat might not be the right way. We can use the time in May to actually do the kind of work that we are beginning to discuss here and spend a full day of the two days focusing on that in preparation for what might happen in September and November. But we can get started in May since we are not necessarily going to have a lot more new activities in May per se. That is one thought.

MR. SCANLON: On the population health management, I don’t think there is anyone who could come in and give you a primer. Everybody approaches it somewhat differently.

But what we can do is sort of the way HHS thinks about it. These are the things that have money behind them. The accountable care organizations, care coordination, bundle payment, those kinds of policies that are under way that really rely on the ability to share information. There are even measures in the quality reporting realm now that people are trying to think of that reflect this approach to care coordination and accountable care. We could probably have someone come and discuss about where we are, what their thinking is maybe at our May meeting just to give everyone a preview of how people are approaching this.

DR. SUAREZ: This is only slide 23. Moving on, there are a couple more items for the committee. We talked about last time this new topic that has been brought to our attention. Transparency. Certainly, one of the most important elements in this whole health reform movement, the ability to really look at different things, how organizations are doing different things.

A lot of talk about the need to achieve transparency at different levels: quality, performance, service availability, cost, and pricing. But there have been very limited standards to do that. There are some standards of course on quality. There is relatively less amount of standards on the cost and pricing side.

We have been approached actually, the National Committee, to consider helping lead that discussion on transparency. Last year we heard Secretary Burwell actually soliciting ideas specifically on how to increase transparency.

The proposed approach that we had was to convene another type of event, maybe a workshop, not necessarily a hearing, to discuss different aspects of transparency. Really focusing on what are the current practices. Are there standards? Where are the gaps? What are the opportunities to do that? That is another major topic. Again, it came through the Standards Subcommittee, but is another one of these topics that in December we discussed would be important to bring as a Full Committee. Here are the two major topics around population health and transparency that touches really the entire National Committee activity. Those were the two big topics.

Let me stop there and see if there is additional discussion on this one.

DR. MAYS: It is an exciting topic. What I am trying to figure out now is standards have always been very productive. We tease you about — what was it that one time, four or five letters. I cannot even remember. It was five letters. I am assuming you are going to keep it at that pace. But what I am trying to figure out is how the rest of us are going to keep at this pace if we do the Full Committee.

I see where you are putting it, but I am trying to really understand because some of these are — either you just know this or I am trying to understand how as the Full Committee we can do all of this. I know what standards do. Five letters. But I am trying to understand how we can —

DR. SUAREZ: These were probably the two most significant topics. Actually, in the next slide, there is another big one too. Two very significant topics that we thought would be important to bring up. Again, following Bruce’s and Bill’s comments, we can stretch. We are thinking 2015 and we are already in March almost. We can certainly stretch this beyond 2015. We need to. And think about plotting different activities through the year.

We are going to have to deal with ongoing activities as a subcommittee, for example, as standards, some major activity like the Review Committee in June. But we think it is going to be important not to just keep churning the process that we have followed in the last seven or eight years with the Standards Subcommittee. We need to move beyond those activities and really think of the larger question.

MR. SOONTHORNSIMA: When you look at these slides, they are huge topics. Health care transparency. That is a whole career. That is a whole department, division. When you look at this, I have to think in order to — to your point, how do we come up with a vision that we all can hang our subcommittee work around? When you look at some of these things, let’s not get over excited about the enormity of this, but how do you apply a concept of transparency. How do you apply a concept of security, privacy, stewardship, what not, to solve that particular problem or achieve that vision? Again, when you look at health care, when you look at the broad context, convene a workshop, quality, cost and everything else, that is significant. Maybe there is only a small thread that we can apply the concept of transparency to. Think of that in that —

MR. SCANLON: I view these as potential ideas. It is not a work — I think we sort these out —

MR. SOONTHORNSIMA: I agree with Bill. We should try to focus on whether it is population health and apply the concept of data, stewardship and standards and so forth. Hang to those themes.

DR. SUAREZ: Briefly, there is a prioritization process really that has to be defined too. What is critical? What is significant? What is timely and how can we plot that?

MS. GOSS: I think this conversation echoes for me a lingering question from the prior slide discussion, which is what do we really agree to do as far as organizing ourselves at the May meeting and how does this all fit in within? How do we parse our work out in a way that we can actually achieve it and have it be a cohesive work product that helps advance everything? I am trying to take this discussion in that backdrop. But I am still not clear who is on what assignment for what timeline in May. Maybe I just missed it.

DR. SUAREZ: Maybe one suggestion is the executive committee actually can meet between now and May to develop some conceptual elements that can be then brought back in May for the working session, not retreat, but working session. Maybe that is something we can try to do as an executive subcommittee.

Let me finish up with the next couple of slides. Actually, this is the last slide really about topics that the subcommittee on standards has looked in to. This morning we talked about roadmaps, a lot of roadmaps. Certainly, the national — the ONC interpretability roadmap. I mentioned we keep separating administrative and clinical. We had talked about an eHealth roadmap for the administrative world. That is why I was mentioning to Jody that we had thought about and had started discussions and we had a workshop and we had a number of meetings with CMS.

Last year, CMS was going to hold an eHealth roadmap meeting. They postponed it to 2015, a summit. We don’t know yet if they are going to hold one.

But in any case, there is that other big important component tied to the discussions about interpretability roadmap that are happening right now. This one has a much more time limited very high priority in terms of if we want to contribute to the comments of the interpretability roadmap and add this perspective, we would want to do it in the next couple of months given the deadline for comments. That is one area.

We also talked about — and this one we are thinking of incorporating it, inserting it into our review committee function that administrative transactions using health care reform. Really, the eligibility, enrollment and premium payment and how they are working. We can take advantage of the review committee responsibility. I think it was part of the provisions of the review committee to review these types of transactions. This second large bullet I think we are going to incorporate into the review committee process and include in our June hearing.

The third major bullet is another interesting one. Administrative transactions in long-term care and behavioral health settings. I think there is a lot of interest around where are they with respect to the implementation of standards. Again, in the review committee, we are hoping to invite these perspectives to see where they are. It is going to be an important component of our review committee as well.

PARTICIPANT: And they have already been adopted.

DR. SUAREZ: They have already been in place. They are part of the standards already. We want to hear how they are going in those settings.

And then the last one is really another major one. This is really probably most transformative element in the administrative process. With all these new payment reform — alternative payment methods and models, there has been always a question. Where is the claim going to go? Claims are elements that were created for a fee-for-service world where I provide service and I sent you a bill. In this new health reform environment where we are seeing Medicare already moving significant parts of their program to alternative payment models and growing very quickly, hopefully by 2018 apparently we are going to almost 100 percent of Medicare under alternative payment models.

What is going to be the payment of the administrative process that will achieve all claims? That is what this is all about is what is the next generation of transactions that would need to be thought about and developed to support health reform.

Right now, in the alternative payment models, it is all tied to quality reporting and population health level reporting and aggregate reporting. There are already other standards in place to actually communicate that.

There are the HO7 standards that have been used to report quality measures both at the individual level as well as the population health level. There is a lot of interesting opportunities there. I think we, as a national committee, have the opportunity to really set this as the next transformative initiative in our work. This one is significantly tied to the Standards Subcommittee, but again also very connected to population health and others.

MS. LOVE: Walter, it feels like my world back in settlements, capitated amounts. Some of the states now are getting some of these extra fields that are outside of — that is what you mean in that bottom —

DR. SUAREZ: I think that is one of the current ways of thinking of it. We haven’t even started to think about really —

MS. LOVE: It is not even patient-level payments, but they —

DR. SUAREZ: This is not pay by volume, but pay by value.

MS. LOVE: We are seeing states capture some of these fields outside of —

DR. SUAREZ: Really, we are talking about that change. At some point, some of us hope maybe that at some point we might get out of the business of doing claims the way we do it traditionally.

MS. LOVE: But not going back to the ’90s please not in that sense.

DR. SUAREZ: No. We do not want to use 1980s technologies to go back to the 1990s. We want to move to the 21st century. But one interesting point — if you can think about connecting this with interpretability, one of the — we were talking about this during lunch with Ob. One of the intrinsic disincentives, very strong intrinsic disincentive for interoperability is fee-for-service. The more fee-for-service we do, the less interoperable we want to be. There are systems today that have demonstrated that by saying if we are interoperable, our revenues will drop 30 percent. Think about that point. If we are interoperable, our revenues are going to drop 30 percent.

MS. LOVE: But on the other end of the spectrum if you have no way to account and look under the hood like in the ’90s, there is another implication that we suffered from and still continue to suffer from decades later in a huge way. Somehow, we have to find a solution.

DR. SUAREZ: The hope is to not only be able to account for population-level measures, but account for very reach clinical-level measures without having to do pay on a volume basis. That is the challenge. That is the next generation. That is another big topic. This one is of course a lot down the road longer-term transition. If I were to put it in the next 18 months, this will be the later part. Those three slides were our contribution to the work plan. We are certainly very excited at the opportunities.

A lot of these or some of these can be worked out in quarters three and four of this year where the Standards Subcommittee has not yet defined any specific activity for those. That is basically what I think we had.

Let me stop there and see if there is any more questions, any other comments, any other comments from our members.

DR. COHEN: I am trying to integrate all of this into the conversation we started to have around planning. I am wondering thinking about the May meeting. There will be two action items. One will be from population health. Hopefully, a draft letter for the secretary and another from you, Walter. But is it possible that we can use the three blocks for the three subcommittees to combine them into — maybe short reports for priority activities updates or maybe we can do that somehow before the meeting and take the time to combine the blocks to do some of this more convergent planning. I am trying to think of —

MS. KLOSS: I think though to be productive with the Full Committee would require some careful pre-work. I am not convinced that there is going to be time to frame up and design how to conduct such a big discussion by May, but we maybe could do that kind of work in May.

I don’t necessarily think something like this gets done in one meeting. I think we could do — sometimes I call it the plan to plan. You could do that kind of teeing up what topics we wanted to discuss pulling together kind of the background briefings and decide how to set up the discussion for September. I don’t think we should look at that as one lap in the pool either.

MR. SCANLON: I think what we might want to think about as well is many of the issues that we are talking about — they are alignment issues, but they are also delivery system reform part of the accountable care, the care coordination, getting folks under some sort of a plan management kind of an arrangement, which part of our delivery system reform. Maybe I would plan if the committee is interested to have our folks who are leading this initiative to — and again, they are trying to use the policy leverage and reimbursement and so on that HHS has to steer some of that. But you would see where the goal is anyway. There are goals about getting percentages of the population under accountable care or under some sort of plan management kinds of activities. That I think just in terms of a stage-setting kind of an activity, we do that as well. Then we would have some basis for where would we make some sense. Again, remember, we are the standards and the privacy and the information infrastructure part of all of this, not so much the reimbursement. We could do that.

MS. DEUTSCH: I just wanted to also bring in that you might also want to consider the implications on implementation. You have to tie it in with how you are going to implement any of these initiatives that you are taking to make sure that you are not creating a bottleneck. That was one of the things that came up at earlier meetings that there should be a roadmap as to what has to be implemented so that you do not have everything converging at one time.

DR. SUAREZ: I think one of the opportunities we have between now and May is convene maybe one time or maybe a couple of short one-hour sessions of the Executive Subcommittee to begin planning some of the materials that will be presented, discussed. That was our report.

The last thing I think we want to make sure we confirm is our June hearing. The dates that we had identified again were during the week of June 15, which were the original dates that we had for the national committee meeting that we moved now to May. We wanted to see your availability for the week of June 15. Ideally, it won’t be Monday and Tuesday because that would require Sunday travel. It would be Tuesday, Wednesday or Wednesday, Thursday. We want to avoid probably Friday as well since this is going to be a two-day, full day, we want to leave time for people to leave. How is the availability for June 16, 17, 18 for people? Is that possible?

MS. LOVE: I will be out of the country. I will be in Prague.

DR. SUAREZ: Vicky?

DR. MAYS: Possibly. Graduation is near the end of week.

DR. SUAREZ: Tuesday and Wednesday might be better. Alex?

PARTICIPANT: I will adjust.

DR. SUAREZ: It looks like that week could work for most of the people. Tuesday and Wednesday might be better.

DR. ROSS: I think I am obligated to be giving a speech in Minnesota that day, but I need to verify that.

DR. SUAREZ: Let’s log Tuesday and Wednesday, 16 and 17 of June just to put it on the books. Anybody on the phone?

PARTICIPANT: That works.

DR. WALKER: This is Jim. I will try to make that.

PARTICIPANT: I will try to be there.

MS. JACKSON: We will follow up with a doodle so that we can get that confirmed. But the main thing is having your verbal consent for those who are here. Very helpful to help us plan and go forward.

MR. SCANLON: I think we could take a break. Why don’t we take a break until 3:45 and we will start back on the agenda. Linda, you will be bringing us up to date on the Privacy Committee.


Agenda Item: Privacy, Confidentiality and Security

MR. SCANLON: Linda, the floor is yours.

MS. KLOSS: Thank you. This is the section of our meeting that is devoted to Privacy, Confidentiality and Security led by the co-chair, singular co-chair, missing my real co-chair, Leslie Francis, who has emeritus co-chair.

Just as a reminder, the members of the Privacy, Confidentiality and Security Subcommittee are listed. I would like to know who is on the phone because I believe both Sallie and Jack are joining us by phone. Gail? Terrific. Thank you so much for being here for our call today. We have our emeritus co-chair and a full complement of the subcommittee and staff. Thank you so much.

Our agenda. Like anything, we are not sure how long it will take. But essentially, I have us in three chunks. First to discuss the draft of the hearing on the Section 1179 of HIPAA. We will walk through that and really solicit everybody’s ideas. This will really be a working session where we try to come fairly close to finalizing our agenda for that hearing.

We will quickly recap the plan for dissemination of the toolkit where that is at and what we hope to do next with that. And then spend the rest of our time reviewing the subcommittee development and 1516 work plan, as it exists today, but subject, as Jim says, to flexibility and agility.

I sequenced this in order of priority. We have some urgency to move the hearing draft along. I will say that this actually is draft number two that should be at your table.

Where did this come from? Section 1179 is the provision that exempts financial institutions from HIPAA obligations. It was envisioned of course at a time when that was a pass through of information. But as financial institutions have taken on new roles with regard to handling protected health information, the questions have arisen and it is causing some areas of confusion. At a recent meeting, the former chief privacy officer of ONC suggested this might be an area for fruitful work by NCVHS. That was seconded by Rachel and the team from OCR.

We thought that given its scope, it is one section. It is fairly narrow. Although like everything else we touch, it is very complex when you start drilling down that it seemed within our bandwidth and was an area of HIPAA that needs some attention is not on other’s plates at the moment. That is where this came from by referral and by suggestion. We have moved far enough into it to know what we don’t know and have framed an agenda, which we will ask you to help us flesh out.

In terms of where we are at now, we have committed to a hearing on May 6. We had originally thought it might be March, but we pushed that out. Because it is a stand-alone hearing, our last committee discussion suggested that we would go ahead and have it be a day and a half with one day essentially of hearing and use the following morning to begin to frame our letter rather than leave the hearing go away for a few weeks and then try to get back into it. We are thinking of it as one full day of hearing and then a working session the following morning. You will see that in the agenda. Our goal would be to have a draft letter for consideration by the committee at the fall meeting.

Any comments or questions on that?

Then with no further ado, what we will drop into is a discussion on the draft hearing and see if you have suggestions for refinements as you look at it. What is not clear? I think all of us on the subcommittee would admit that this is an area that we are probably feeling less confident in than if we were talking about privacy, confidentiality and security issues as it relates to provider/payer relationships, other covered entities. We have had to do some learning.

We distributed an article or actually it is a paper. It does not even have a date. It is by Kirk Nahra. He certainly is someone with a reputation in this area. It is written to present the background issues and also bring in a comparison, if you will, of financial institutions and their obligations through Gramm-Leach-Bliley and HIPAA and kind of the state of play. I know you haven’t had a chance to read that. It isn’t a peer-reviewed article. It is a paper I found through Google Scholar. It isn’t even dated. But I think those of us who have read it — this is a pretty good background from a law firm partner and somebody who is certainly credible.

I would also say that at the last subcommittee meeting, we agreed that it would be very helpful actually to have a more formal briefing on the state of the issues. That subcommittee meeting was just on the 11th of February. It really wasn’t possible to pull together a briefing for this meeting. We apologize that perhaps you are not feeling as well prepared to contribute, but I know you will be very helpful.

DR. FRANCIS: I just had a question about the overview first and how that is framed a little bit because it seems to me that the first thing to ask is what are these entities doing.

MS. KLOSS: Would you mind if we just backed up? I thought it might be helpful to start by considering what we have laid out as the purpose of the hearing and the objectives and see if they are clear and then we will go to the design, as it exists today. Let me just give you a minute to read that paragraph and see if it speaks to you and then we will talk about the objectives.

We are really talking about review, the current application and compliance issues relating to the evolution of services involving protected health information. That is what comes through in the paper we distributed that depending on the financial institution’s functions and services, it makes a difference with regard to issues relating to 1179. We were careful to choose our words. This is a hearing. We are just fact finding.

The objectives of the hearing then are to increase awareness of current practices and the ways in which Section 1179 are being interpreted. A review, discuss and consider for recommendations, practices relating to 1179 and formulate recommendations to the secretary.

DR. COHEN: What are the basic practices and are there concerns about them now? I cannot tell from this. Are we creating a problem that we are trying to correct? There is no problem? I need a little more context to figure out what it is.

MS. KLOSS: Well, I think as you will appreciate when you get a chance to read that article, the issue is that financial institutions are expanding their services in the way they are handling protected health information. They are not just simply passing money. Some are functioning as clearinghouses. Some have other kinds of roles that would suggest that they maybe business associates. It should have a business associate relationship or comply with some provisions of HIPAA that they may not now be complying with.

DR. FRANCIS: Linda, I think it might be clearer if that first objective were actually to increase awareness of what these entities are doing where protected health information is involved and how are the entities evolving And then a second bullet, increase understanding of the ways in which Section 1189 might or might not be interpreted. The real question is how do you interpret that exception language in light of the way practices are evolving. The worry that OCR and ONC actually sent in two different ways to us is that there is a disconnect between the evolving nature and HIPAA interpretation or a potential disconnect. That what the hearing really needs to do is to look at that question without obviously making any assumptions one way or the other.

PARTICIPANT: Maybe you said it Leslie. Specifically perhaps their rule and a usage of protected health. Be very specific.

PARTICIPANT: I am wondering if Maya captured the language as Leslie stated it.

PARTICIPANT: What I wrote was that we should increase awareness of how 1179 may be interpreted. How do we interpret that exemption language in light of the evolution of financial services today as opposed to back in 2003? By the way, Rachel has kindly dug up the date of this paper, which is March 2004. It is ten years old. It came around the time of the compliance date in 2003 of HIPAA originally. There is a publication called privacy and focus, but is that a — or is something else? Another publication called privacy and focus in which he had a chapter is what it looks like. That came out in March 2004. But since then of course we have ten years of evolution of financial institution practices and they are expanding their services and going into areas that I think just were not anticipated at the time of the exemption, which I think when it was written was intended to be narrow, was intended to cover — you are paying with a credit card.

PARTICIPANT: Authorizing, processing, clearing, setting.

PARTICIPANT: Again, I think Leslie said it best. The first bullet should be to understand the evolution of those practices and then the second bullet under the objective should be to understand how those interact with Section 1179.

PARTICIPANT: And ways of interpreting it.

MS. KLOSS: Those on the phone, any comment on that? Thank you.

With that clarification, then let’s move on to the agenda. Our thought was to have a more formal —

PARTICIPANT: Where we say formulate recommendations for the secretary, for this topic in particular, I think we might want to be softer and say consider whether recommendations are appropriate at this time just because I have a feeling that when the financial institutions who are not normally present at these meetings find out that there is going to be a public hearing about this matter, I am guessing you are going to get quite a lot of attention. I wouldn’t want to suggest that — this is just advisory committee — it is a hearing. I just think it is appropriate to keep it in that mode until we have more information.

PARTICIPANT: I did reread bullet two and three and they are a little redundant. I think if you split number one the way Leslie is suggesting and reshape number two then we can cut three.

PARTICIPANT: I guess if you just have two, you should make it clearer for whom the recommendations are.

PARTICIPANT: The recommendations are always for the secretary. The only authority you guys have is to recommend to the secretary.

MS. KLOSS: It was our thought that we begin by some —

PARTICIPANT: I am playing in my head the word hearing and I hear what you are saying that this could be a rather engaging activity down the road. Somehow, I am envisioning that we put this out and we let the world know about what this hearing says. How do we deal with the fact that even for May 6 there might be a deluge of folks who would want to come in? Have a public comment period. This may be a big deal. I don’t know if we are anticipating that.

MS. KLOSS: We are actually. That is why we are taking this care.

PARTICIPANT: The other thing is think about whether you want to use the word hearing because our lawyers generally tell us —

PARTICIPANT: That is where I was going. I would think of another word for this May 5 event other than hearing based upon how the industry may interpret hearing.

MS. KLOSS: I have never heard us use a different word.

PARTICIPANT: I am of two minds about that. One is that is just a word that this committee always uses and I don’t want to make it look like we are doing anything out of the ordinary than our normal business. On the other hand, I understand that if you were on the Hill, hearing might look like oversight hearing rather than just — that is not what we intend. Our hearings in general are just fact finding.

PARTICIPANT: But when people start hearing about it, these are folks who don’t ordinarily follow the committee and it may sound more formal than it needs to be. Public meeting or something like that.

PARTICIPANT: Roundtable public meeting.

PARTICIPANT: Can I ask one other question? Have there been complaints about this? Is it the logical, theoretical?

PARTICIPANT: Not per se. Many entities that are performing business associate functions have new liability under our rules, which is a surprise to many. The more you go up and talk to folks, the more surprised I think many are. We have heard in other forums at other FACAs the voice of this particular industry, financial institutions, with concern about an overlapping matrix of requirements with respect in particular to security. The feeling that there is just concern with the number of rules that are under the jurisdiction of different departments.

I would not be surprised if there was some concern by the industry about recommendations moving forward to the secretary on this. But I think it is clear that their financial institutions are no longer doing business the same way that they were back in 1996 and even through 2001, 2002 when we were working on promulgating our rules. Even if you look back to 2004 with the security rule, that is now ten plus years. It is 11 years. There is new liability now because of the Omnibus rule.

We are playing in a different environment with respect to cyber crime. I think it is a good opportunity for us to hear from the industry, their interpretation of Section 1179. We would love to have recommendations from all of you on how we move forward.

PARTICIPANT: Let’s just not presume that regulation is needed necessarily. It is a fact-finding —

PARTICIPANT: Technical assistance, guidance, education, outreach.


MS. KLOSS: We contemplated beginning the hearing by inviting someone to do a level set to explain for everybody in attendance what 1179 is, where it came from, how it is currently being interpreted and so on. I thought that it would be useful to take that time rather than plunge right into panel one. That is the design.

Leslie, you had a comment on that.

DR. FRANCIS: What I wasn’t sure about probably was the relationship between that and panel one because what I thought one of those two needed to do was enlighten us about the changing practices and what is going on in the industry. I just wanted to make sure that is the idea not what do they think should happen, but what are they actually doing.

MS. KLOSS: I think that is what we saw as panel one. But the overview.

PARTICIPANT: You are going to get a very particular view from the industry of what they think they are doing and how it relates to 1179, which might not be the same view that you get from someone like Joy Pritts who first brought this to our attention. We can have some back and forth about that. The drafty draft is exactly the kind of stuff we are trying to figure out is who might be in a position to give an overview of this issue because I think we all feel less than really solid about what this issue is and it would be nice to have some kind of neutral overview of where it came from, how it has been interpreted, and what is changing now before we get the industry’s view, which without putting words in their mouth, I am expecting to say we are still not business associates. If we heard in advance that the financial institutions are not worried about being business associates and are planning to embrace that role, we might not have a need for this hearing. We need to do some work before we put it together.

DR. FRANCIS: Let me just clarify it because I think the way you put it is exactly why I wanted to raise this question. One way to view what this panel would be about is the industry telling us what they think.

PARTICIPANT: Are you talking about the 945-211?

DR. FRANCIS: The other way to view this would be ask them what are they processing. Are they, for example, matching records? Are they getting protected health information? Are they having business associate contracts or not? Those are all just fact questions. What are the evolving practices? Not their view. I think there should be separate panel that is their view about where this put them with respect to 1179.

MS. MILAM: This is Sallie. If there is an opportunity, I would like to jump in. I thought that Kirk Nahra’s white paper was so helpful in framing the issue. I think that there are two areas that we might consider using as a frame from this paper. One is what are the new value-added services that pull financial institutions into the covered entity clearinghouse bucket and then the second area is where are financial institutions now acting as business associates. I think it would be helpful to get just very clear straight facts about both of those before we understand how financial institutions view them or feel about them or anything else.

PARTICIPANT: Can I just clarify something that Walter was talking about at the last meeting that we had? Two kinds of clearinghouses when you are talking about financial institutions. One is the HIPAA clearinghouses that are covered entities for sure. These are translating into standard formats, the things that we know from our standards work. And financial institutions call it clearinghouse, which is a payment clearinghouse for reconciling electronic funds transfers, which is a different thing.

PARTICIPANT: We have to be clear on clearinghouses.

DR. COHEN: Sallie. Hi. It is Bruce. I really liked your questions. When I look at this, I am thinking that the 915 to 945 slot, the overview, should be expanded to provide a broader explanation, a context of the changes in the industry by some non-industry person to describe where things are at now. I don’t know whether Joy or Sue or someone else or a panel of folks are the appropriate people. Make that clear. Here is what the playing field is now and then having the industry respond. Panel one should actually be panel two and the unnamed briefing overview should maybe be panel one — expand that maybe as an overview opportunity.

PARTICIPANT: I think we actually have time to juggle the agenda for the day because we have tacked on the working session for the following morning. We could actually expand the panel or the background briefing and then move into current practice.

PARTICIPANT: Can I just respond to what Leslie was saying about trying to separate the fact-finding part of talking to financial institutions from the opinion or policy positions of them, which would be ideal if we could do it? My sense is we cannot control what they say once they get up there or what they put in their written statement, which we asked them for in advance. Those kinds of things are going to be comingled no matter how much guidance we give them about what we really want. If they see an opportunity to speak essentially to the secretary in a public forum, they are going to put in there whatever they want.

I think Leslie is right that that might be the focus of our question, sort of a fact-finding thing. I think it could be a good overview if we just had people disposed to talk to us about what the current practice is or what the evolving practice is or what the next couple of things down the road they think they might be developing or business areas they think are hot that they are going to go into next. But I am guessing we are going to get the other thing too. If you have ideas about how you might separate those things. It has been difficult in the past, as you know.

PARTICIPANT: Yes, but I think you ask — if you give them questions to answer, they get it because they are coming in. They get to answer whatever they want to. But if you ask them to address certain questions, they will do that as well or at least there is an attempt to do it.

If we give the wrong impression here, this is going to come to some very high level very quickly that we are reaching beyond the statute. I would really like to portray this and in actuality have a fact finding that this is what the law said. It made this exemption. It was a while ago. How have the backing in terms of their current functions? What do they do to comply with this as well as their Gramm-Leach-Bliley as well? Take it where it leads you rather than assume they are going to be — it is clearly fact finding I think from our point of view. We don’t want it to be stopped in its tracks because it looks like HHS is overreaching. It is the sort of thing that the ABA or whatever — they will call HHS right away. Let’s just make it more like fact finding.

If it leads to some issues. I am sure there are business associates. I cannot imagine. But let them —

PARTICIPANT: — was at the time very strongly that they are not business associates and that 1179 keeps them out of that. All banking that they do — anything that they can do as a bank is exempt. That is not precisely what the language says. If they have evolved in their policy thinking about whether being a business associate is maybe now more advantageous because they have control over their relationship more, I don’t know. But we would like to hear that. That is a possible thing we could hear.

PARTICIPANT: I cannot imagine that they would have contract with providers without being — I cannot imagine the covered entity is going to say sure. You don’t have to have any — but at any rate. It is up to them.

PARTICIPANT: We are entering this space with a very open mind. I think we are well advised to keep the questions very fact finding.

PARTICIPANT: We can see where it leads us.

MR. SOONTHORNSIMA: Are you asking each panel the same set of questions? Again — how they are using the data, how they are evolved. When you look at panel one and panel two, panel two seems like a more of a payer perspective. And then the last one is really a clearinghouse payment handling settlement agents. You ask them the same set of questions, correct? And stay in the spirit of fact finding, not really probing to their opinion or judgment on whether or not —

PARTICIPANT: We have the health — covered entities.

PARTICIPANT: Some things are going to be more relevant than one group than the other.

PARTICIPANT: I agree. If you keep the questions kind of similar, the same, exactly the same, perhaps you get different perspectives.

PARTICIPANT: To the extent we can. I can see —

PARTICIPANT: That way — from the pay respective off the cuff, I can think about HSA, Health Savings Account. I can think FSA accounts and how some of that — ten years.

PARTICIPANT: It does seem that when you look at panel one, two, three, they seem pretty logical that we would have those three panels.

I guess the panel that could be the most controversial is the fourth panel and maybe that could be — now that I look at and benefit from the wisdom of the group. Maybe we don’t unleash the privacy thought leaders, but maybe we construct some panels of those who are participating in what is next or what is coming next. If we focus the panels on what is today and then looking forward at this convergence of information. And risks perhaps in medical identity risk, other kinds of things that everyone is worrying about rather than have a discussion on privacy thought leaders. What do you think, Maya?

MS. BERNSTEIN: I am having a side conversation about cloud services that we had a question about at the last phone meeting about whether we needed to include certain kind of cloud services. This is a straw man. We are going to mix and match these. We weren’t sure whether clearinghouses go with the financial institutions or with the pay guys like PayPal or something. If you have thoughts about all that, it is fluid. Some of it of course depends on when whoever is coming can show up. Some of the way we organize panels is whenever we can get that person to either show up in person or be on the phone. We will have to adjust for their schedule. We cannot always keep the panels as we want them, but we can try as much as possible to organize them this way.

But I remember we had a question — forgive me. I was having a little sidebar with Rachel about cloud services like drop box or other kinds of things that are perhaps moving into a space that we did not expect 10, 12 whatever years ago and whether they are relevant to this thing. We couldn’t quite figure out whether they are relevant to this.

PARTICIPANT: I would not include those. Think of those entities as still providing the infrastructure.

MS. BERNSTEIN: But Amazon is providing that too. They are both storage and they have pay in the back. If you put them all in the same box —

PARTICIPANT: To your point though, this is still within the financial services set of services as opposed to infrastructure technical —

PARTICIPANT: Where you store the data is —

MS. BERNSTEIN: Infrastructure I think is too broad a term because pay services are part of infrastructure. I can have a generic pay service like PayPal that can make any kind of payment that you want. It can move cash. It can translate foreign currency. It can do lots of things that are not — I don’t know what they are doing.

MR. SOONTHORNSIMA: Do they require protected health information to conduct business?

MS. BERNSTEIN: It depends on what their business is. That is the question. If drop box is doing storage, fine. It might be that my doctor is storing her medical records on drop box. That might or might not matter at all. But that is not an 1179 issue. It might be that that needs to be a business associate for her.

MS. KLOSS: I am sort of thinking that if we can in a day get our hands around current issues with 1179 and financial institutions, we may.

MS. BERNSTEIN: What I was asking is whether there are 1179 issues in there that I missed because I don’t know what the business is that they are doing actually. I am guessing that Amazon is selling its shopping cart services as a separate thing than selling books. Therefore, they may be going into a business that we care about that might be regulated.

MS. KLOSS: But do we want to deal with that at this hearing?

MS. BERNSTEIN: That is a question. They are a financial institution. They are not regulated as a bank. I think they are regulated by the FTC under those circumstances. My knowledge of banking law is not so good. You have the traditional national banks, other banks that are regulated by whatever it is. FDIC or the fed or OCC. And then you have other kinds of financial institutions that are regulated by other agencies. There are the ones that are regulated by the SCC, but there are also some that are regulated by the Federal Trade Commission like payday lender, for example, or other kinds of financial instruments that are not traditional banking. Those like PayPal — those kinds of things I think are probably moving into doing health, which is a huge — we just don’t know.

As I understand what we are doing is trying to tease out what the facts are, what the new businesses are there in the last 10 or 12 years and get a handle on it so we can see whether there seems to be anything worthy of recommendations of any kind, not regulations necessarily, but do we need to put out guidance. Do we need to talk about technical assistance or the kinds of different things that Rachel mentioned that are short of regulation, but still would help that industry or others doing business with them to comply or not go awry of HIPAA. Does that make sense?

MR. SCANLON: I think I would again — this is getting to be higher risk every time I hear more. It is quite possible I would shut down if we are not careful. I really would — is very specifically and focus on what we think can do. The more we expand it — some of these other web retail. It is just really going somewhat far up field. I leave it to OCR if there has been some concern. It sounds a bit like — this is a high-risk activity for the committee.

MS. KLOSS: Some of those other kinds of emerging businesses could be part two. I think as we design this, we put panel one as financial institutions and clearinghouses and then panel two as covered entities. We can explore what business associates and other relationships exist and what the business practices are and how they are evolving.

MS. SEEGER: I think the one question we would want to ask maybe not having the separate panel of other entities, but what would be helpful is to understand whether or not subcontractors are involved in this function that financial institutions are providing on behalf of covered entities. That would be illuminating for us because, as we know now, with HITECH and Omnibus rule, liability extends downstream to subcontractors. Really that is our question. Are there others who are touching this data that we do not know about? That would be very informative to us.

The interpretation of the exemption is really what we want to focus on, but also understand how the business is being practiced today. And one of those important questions is whether or not there are subcontractors who are involved in this work.

MR. SOONTHORNSIMA: Again, to your point earlier, I believe that the only way to qualify to be subject to 1179 or not is, one, if you are a financial institution or acting on behalf of a financial institution to conduct the business of authorizing, processing, selling, billing, transferring, collecting payments. Two, second qualification is if you are touching any personal protected health information. Correct? With that said, don’t add anything else to that.

MR. SCANLON: — covered entity. It is sort of an obvious link. If you are exempt otherwise, sort of what are practices when you do have — that kind of information comes through you. If we started there, I think it would help. We would probably learn about some of the other things — experts usually say. I wouldn’t want to go too far beyond that to be honest. It is not my own. I am just thinking this would get right up to the secretary pretty quickly. If we cannot explain it when we are doing it.

MS. KLOSS: What I hear is that we are going to expand the background. We are going to keep panel one, panel two. Recast panel three and four somewhat. Keep our questions crisp, fact finding, and as consistent as we can from panel to panel.

We are brushing up against the end of this part of our subcommittee agenda. But I would like to quickly get any specific suggestions that you have for panelists.

DR. FRANCIS: Could I put in a specific suggestion about a question, which picks up on something Rachel said right at the beginning. I think we should be asking them what are their concerns about the current regulatory environment. That is a fact question. What is worrying them? Are they happy with it? Are they finding that the problems — that they are facing problems about knowing what their status is. If there is a question like that, I can see that really diffusing criticism because we are trying to hear from them.

MR. SCANLON: You never want to have people come in and confess that they are breaking the law or they are unaware of it. You really want to do it in a way that is somewhat — they may incriminate themselves, but they are basically — it is in a positive sense.

MS. KLOSS: Are there any suggestions of people that you have worked with or colleagues or interacted with that you think would contribute to this kind of hearing that we should know about? Jack or Sallie?

MS. MILAM: I think it would be great if we could have Kirk Nahra come, give us a briefing to give us a foundation to understand what the different buckets are and perhaps how he sees industry. He has a lot of different clients, how he sees them falling into the different buckets and what services they are providing. He could probably fit into any number of the different panels or as an initial speaker.

MR. FULCHER: I don’t have any other names to offer. I have heard Kirk speak often enough to know that he is pretty balance. I think he would be a good add. I don’t know exactly how or who he would be representing other than a kick off, maybe an initial speaker.

PARTICIPANT: That is the question is whom we would be representing.

MS. BERNSTEIN: I think that is the real issue. But if he was there to help his view of the background with no particular allegiance to a point of view.

MS. BERNSTEIN: Maybe we can get him to agree to that. But he has his clients. Many of us know him well because he served on one of the ONC advisory committees on privacy. Maybe he was the co-chair — the early ones under Brailer. And he has been working in this area a long time. He is on the board of the International Association of Privacy Professionals and so forth. There might be other academic sorts or others.

Usually what we do here is we invite a particular professional association and they send their representative. That association represents the industry. We might have the banking industry.

PARTICIPANT: HFMA, I suggested we get the chief financial officers.

MS. BERNSTEIN: They will send who they send. If they send to us Kirk Nahra, that would be fantastic. To ask him individually — I trust him to put on his neutral hat. On the other hand, it could be awkward. I don’t know who his current clients are, what they will expect from him and so forth. If he is not representing a particular professional organization.

MS. KLOSS: Can we have a conversation with him?

MS. BERNSTEIN: He will be amused that he has been talked about on the record.

MR. FULCHER: I think the question is how we ask him to position his interest in helping.

MS. KLOSS: I think we just say I came across this article and what have you done since.

MR. SOONTHORNSIMA: Another suggestion. When you talk about self-insurers, typically it is probably the brokerage houses. Talk about benefit consultants. These large consulting firms. They are the ones who do a lot of these facilitations for HSAs, health reimbursement accounts, that type of thing especially for large — they get stuck in the middle facilitating all these things. They might actually be able to reach out to others for us. We never invited that group before.

MS. BERNSTEIN: They work for somebody else. They are a consulting company.

MR. SOONTHORNSIMA: They are facilitating.

PARTICIPANT: They are advising.

MS. BERNSTEIN: I have some ideas about whom I can talk to.

MS. KLOSS: For the subcommittee, I think what we probably need to do — well, maybe there is some time during this meeting. If not, you will be getting a doodle from Janine very soon because we will need to reconvene early next week to try to pull this together. Thank you. I hope this discussion has been helpful to everyone to know what we are attempting to do here.

DR. SUAREZ: One quick question. I am sorry if I missed this part of the discussion. Are you planning to draft specific questions for each of the panelists too?

MS. BERNSTEIN: If you want to send particular questions, I will — usually what I do is I write an email describing who the committee is, who the co-chairs are, what we are doing. Probably all of you except for our new members have seen — actually, I know at least one of them have seen one of these because she received one on the other end, an invitation to testify or be a panelist — that explains who the committee is, who the co-chairs are, and what we are doing and sometimes lays out specific questions that we would like them to be able to talk about and they can consider whether they are able to appear from that. I have taken some notes here, but if you want to suggest particular questions that you think would be useful there, I am happy to call together a few and put them in that kind of an invitation.

MS. KLOSS: I think because we have had you so much engaged in this discussion, when we do produce draft three, we will send it to the Full Committee and maybe that will trigger some additional thoughts and refinements.

DR. SUAREZ: I can see that some of the questions would be common for most of the panels and some questions would be more specific to specific panelists.

MS. KLOSS: Have we done what we can for the good of the cause on this topic?

Let’s move on. This is just kind of a quick update on status on toolkit. You can maybe chime in here because I think it is in your able hands now for all of the layout and the polishing of the final document.

At the last meeting, we took advantage of the data work group to help us not be tied to old thinking on dissemination. What you see here in the dissemination plan is great suggestions that came from the work group. Our goals I think if I can state what we hope to do with this because it is a report that only really — a toolkit only has value if it gets out there and gets used. Our dissemination goals are to reach the community stakeholders and those who support their work because we know that universities or other local community agencies are helping the community stakeholders with some of these kinds of data issues. We certainly saw that in the report we reviewed this morning.

Encourage stakeholders and advisors to use this work. Gather examples of how it is being used and then solicit feedback on ways that might be or has been strengthened. When it is released, it is a public document so anybody can take this toolkit and do things with it. I think it would be our hope and Maya has pointed this out that anyone can take it and adapt it and use it. We would hope that that happens.

I think broad dissemination is the goal. We don’t intend necessarily to own it. We are not undertaking to do version two, three, five and stay with it for the rest of our lives. It is important it gets out there, gets used, and takes on a life of its own. With that spirit, we ask the data work group for ideas. They gave us great ideas. I just tried to organize them in a timetable, which may or may not be at all realistic.

The set of approaches, the channels, the approaches, and the timing is my design and all up for debate. I don’t know that we have the capability to do all of this and particularly not in this timeline. Let’s look at this as a draft.

But we probably will be ready to use the NCVHS channels in March to do the initial dissemination. The obvious PDF on the web. I thought maybe some kind of survey pop up or feedback loop or something attached to it so we know how many people might have downloaded it. That would be neat.

DR. ROSS: Would we be also encouraging others to embed it in their toolkits?

MS. KLOSS: Yes, very much. I thought it would be useful for us, as we did with the community report a couple years ago, to develop a Power Point that staff and committee members could use to slip some slides about the toolkit into presentations they are making. Maybe we have the June datapalooza coming up and other things. And then certainly circulate it as a PDF to all of our NCVHS stakeholder followers. Those are the obvious things that we probably would have done. And then everything else —

And then the next one is an eLetter of thanks with the toolkit to all of those that have contributed to our community effort.

The governmental agencies however you choose to spread it to the data council and NCHS conference, communications with ONC and the other — ONC, FACAs.

And then the last two are really what the data working group really suggested that we go big and go virtual. Do some kind of press release. Do a blog. Perhaps a newsletter piece that can go to associations that would have an interest in passing on a link to their members. We could offer webinars or presentations. Do a Twitter chat. I have done two since I learned about this last fall. It is a lot of fun.

Relevant linked insights. We have had conversations now with Robert Wood Johnson. RWJ has the health leaders group that has something like 6000 members on LinkedIn. That would be good. And other groups.

It was suggested that we just publish it as a Kindle eBook or an Amazon short. Create Snapguides, which I had never heard of until they mentioned that, but I have since looked that up. There are a lot of opportunities here. The sky is the limit here. It is 2015.

And I guess really the issue is do we have the capacity to do anything much beyond the first two stakeholder groups or the first three really.

DR. MAYS: I have a question. But I don’t know if we can do it. One of the things we are supposed to be doing is helping HHS to put things out in a different format. We ought to use you as a guinea pig. But I don’t know if we have the bandwidth right now because you will hear about that a little bit later in terms of our group. Maybe we should look at this and ask questions like if we really want the users to have it at this level. Do we put it in a PDF? Do we really want — if we have the time — I have to ask the group because we are really trying to get the guidance out. We could try and make you a use case for us about who you want to reach and how to do it and figure out what we think are some of the best practices. I have to see if we have time because we are dying here. We need some renewal of people.

MS. KLOSS: It is a unique product because it is not intended as a policy document. It is intended to be used in the community.

DR. COHEN: What is a Snapguide?

MS. KLOSS: It is a short version. It is like shaking this thing. It is not an infographic, but just a quick read. Quick distillation.

MS. BERNSTEIN: Linda, there were at the last or maybe the September Full Committee meeting. We sat around with the Full Committee and brainstormed a list of specific stakeholders or whatever that might be able to disseminate this thing. Do you mean to include those?

MS. KLOSS: I do. It is just going to take some horsepower from Debbie’s office.

MS. JACKSON: Starting with the look power, before we even get our horses under our belt, graphics is working with the cover design so it fits in the family of your stewardship, your previous privacy items. It falls in that family. We did that with the population health. It just kind of follows in the look that you can tell it is in that vein and we are going to be doing that with the report population report.

The colors inside. You want to make sure that that does not affect this report than what is in the cover. I will follow up with Linda and Maya in the subcommittee on timing.

I do like the way the dissemination plan is gradated to kind of looked at what we are used to and then beyond. This is a new kind of venture for us. We hadn’t done a press release, things like that. It is just putting the committee finally at a nice place to really show — take advantage of these products and projects so that others can follow suit. We just keep following up and plugging along and chatting away.

DR. COHEN: One quick comment. NCHS was incredibly successful in terms of branding with their rainbow series. Should we be choosing colors for our different themes and trying to work through those?

MS. JACKSON: We are kind of doing that. We have the community with the community symbols. We already have a brown, auburn kind of series for privacy. It is coming.

DR. COHEN: I knew my report — orange was HIS. It is a thought. We are talking about dissemination and updating the way we ran the materials that we provide.

MS. BERNSTEIN: I assume it would be in that same series that Debbie just lifted up. The community series with blue and yellow —

MR. SCANLON: The health data consortium. I don’t know if we have signed up for any sessions or presentations at the palooza. This would be a nice one actually.

DR. MAYS: I was just going to say. I think when Chris Boone was there, there was a discussion with him about it. I just suddenly realize — where is Lilly. It is like I don’t know. We should remember to bring it up because there are a couple of other people on datapalooza that are there. If you can remember to ask. They were very interested in it.

MR. SCANLON: They are looking for agenda items as well, which this would be perfect.

DR. ROSS: The thing about branding. I like it and I don’t. I like it in that it allows people to have a ready reference to point to this, but on the other hand, if the goal is to get other people to adopt it and embed it in their things, you want them to take ownership for it. If you brand it too much then in effect, what it — because I was just asking myself. How do I put that in some of the guides we are doing? Do I just make a reference to it because it is really the committee’s work not trying to claim ownership for having created it or anything. You want broad dissemination and adoption use involvement in other people’s brains and activities. If you grant it too much, you will get the opposite effect. This belongs to them. The best you are going to get is just a little footnote reference. See www for this report and nobody will read it.

PARTICIPANT: Rachel, you guys have already done a lot of this.

MS. SEEGER: We do. We are so excited to help serve as a partner in pushing this important tool out to the community. One of the things that OCR we can pledge to do is a LISTERV announcement. Once you put it up on your website, the committee’s website, we would be happy to work on a LISTSERV announcement to help push it out. ONC is a great partner of ours with also a large reach. And then there are other agencies within the department who I think would have a vested interest in this. We have had great success with our Ebola guidance and working with ASPR, the Assistant Secretary for Preparedness and Response. The partners at HRSA and our partners at SAMHSA whose fingers are really out there in the community, all of their grantees. It is just one place to start.

And then we have a separate mailing list, if you will, to a number of organizations like APHA, others, whose membership might be interested also in getting this. We are happy to act as a partner to you in pushing this out and making sure that it is disseminated as widely as possible. I think a PDF is the way to go to start.

DR. MAYS: I was going to say. I think that if you are going to do that, that is then the launch. With a launch, there needs to be, I think, a few other things. We now find if we have something that we want people to go take it and teach about it, we put the slides with it, which then people will integrate it into lectures and all this other stuff. We make the cover very easy for someone to take it as opposed to the whole thing. It is like this is here. That really is a launch what she is talking about.

I think just a few other things. You can have a little YouTube thing saying here is the guide. Here is what it is intended for. And then if they go together, you will watch — is so much bigger that way.

MS. BERNSTEIN: Are you starring in the YouTube, Vickie? Are you going to star in the YouTube?

DR. MAYS: No. The federal government has a YouTube channel.

PARTICIPANT: We actually have a cable channel and a YouTube channel.

PARTICIPANT: All of those things take a lot of resources.

DR. MAYS: If you are going to do datapalooza, then maybe —

PARTICIPANT: If they are already going to the datapalooza —

MR. MAYS: That is what I am saying is that the slide set that you put up may be the same thing that you are going to use for datapalooza.

MS. KLOSS: Any comments from Sallie or Jack? Gail?

We need to move on to our last agenda item. I thank you for that suggestion. I guess our next step then will be for the subcommittee to work with Debbie to see what resources we can secure to help with this.

I am going to suggest that we just flip ahead two slides and just take this time to look at what the state of work plan for the subcommittee is. This is based on the consolidated plan that Walter prepared for us with some tweaking, adjusting the dates for the 1179 hearing.

Essentially, the work plan — if we just look at activities, this first quarter we are going to continue to prepare for the hearing and the dissemination of the toolkit. We hope that by the end of March, we will have at least the first phases of the toolkit dissemination underway.

Second quarter activities to actually conduct that hearing in May and begin drafting the hearing letter and toolkit dissemination continues.

Quarter three. We had talked about doing HIPAA privacy and security sort of state of play. I think you will recall this discussion from our last committee meeting. Stepping back and looking at areas that continue to throttle HIPAA in the previous slide. We had thought about taking on a new project to hold a hearing and to develop a letter to the secretary, surveying the state of HIPAA understanding an implementation particularly among small providers and other covered entities, assuming that large health care systems and payers are pretty much on top of this. This was suggested by OCR. We have talked about it as a subcommittee. It is not an insignificant undertaking, but it could be important to tease out some additional ways in which we could bring everybody up to make recommendations for bringing parts of the industry that are lagging up to a better state of compliance.

I would really entertain some discussion by the Full Committee on this. It is not that I am not thinking this is a good idea. I think it is. I do worry about the ability to take on a second hearing this year for our subcommittee.

And also, I think we need to factor it in light of the interoperability roadmap discussion we heard this morning with that bottom layer of the cake. That was why I reinforced that question with Lucia really saying that the intent and she indicated on the call with the Privacy and Security work group yesterday that there are resources for ONC to step up training and messaging and advisories with regard to compliance with basic provisions. If that were the case, then what would we benefit by learning that small providers are struggling with this? Because I think our recommendation from that would be do more advisories. But if ONC is doing that to advance the interoperability roadmap, does this still make sense? I don’t think we can make that decision today, but I think this is that tradeoff discussion that we need to have from a strategic standpoint.

I very specifically wrote down what Lucia said. She said we have resources to advance this bottom layer of the layer cake. If we are not teasing out this new information about the state of play until fourth quarter, how will we advance things? I think we have time to explore that.

What I did then on the timeline is just push out the design issues to — we can talk about it more Q2. Find out more what the plans are by ONC. Talk about it in Q3 and not commit to — if we are going to do a second hearing, it would not come until the end of the year. That was my thinking for stretching out because I think we should explore. If they are already putting resources toward addressing small providers, why have a hearing?

DR. STEAD: That resonates with me. There is a lot also going on in Congress and in other places at the moment. There is just a huge amount of play, which means that, again, I think we have to step out a bit to avoid the froth. We were discussing on the way over this morning on the bus. Is the real question a modernization of the legal framework around health? That would reach out beyond the froth and let us do good convening fact finding that would for this be a little bit like the communities as learning systems have been for the last five or so years since whenever that really got front and center. It may be not just pushing it out. It may actually be reaching for a more overarching goal.

MR. SOONTHORNSIMA: I think it is a very important topic for sure among the smaller providers. My concern is the optics if you think about what is happening this year with ICD-10.

The last thing I want to — is to bring this notion of compliance because that could create another noise, more noise. I am not saying this is not important. It is really in the timing and the optics that may create among those entities that have —

MS. KLOSS: Hearing on HIPAA on October 1?

MR. SCANLON: Linda raised a good question here. You heard about the interoperability roadmap, which is in draft out for comment now. Obviously, one of the biggest parts is the privacy part of this as well. Clearly, ONC is asking for a comment. I think they put these ideas together to see what sticks and what comes back.

Two questions. Do we want to weigh in on commenting on that? We couldn’t have a meeting, but we could have a modified common process where — if they have suggestions, we would gather them, pull them together, and then we would have to have some deliberative phone calls or something like that.

PARTICIPANT: When are they due?

MR. SCANLON: April 3. It is not a long time. It is really just —

MS. KLOSS: Is there a different comment timeline for FACAs?

MR. SCANLON: We are not like regular commenters. We could actually send in our ideas later as long as it is before it is finalized and there is not an issue there. We don’t have to be part of the public record for the comment record or anything like that.

MS. KLOSS: Is it a rule making?

MR. SCANLON: It is not a rule making. It is purely a strategic roadmap.

MS. GOSS: But also using their FACAs to review the public comments and to reconcile them. Maybe this is another way that we can promote our collaboration.

MR. SCANLON: We can see.

MS. KLOSS: I am glad you raised that because I was really going to bring that forward as something that I think the committee should think about. Sitting on the Privacy and Security work group of ONC, they have been specifically asked to give comment on the Sections G and H with regard to Privacy and Security. I think this committee should also either to support what the Privacy and Security work groups say or say something else because I think our perspective in light of the work on communities and the data stewardship framework — Leslie has testified recently to that work group on our stewardship framework as it relates to framing new privacy and security thinking for big data, which is the other topic that that work group is working on.

I think we should find some way to enlarge, support, disagree, and debate with those emerging recommendations.

MR. SCANLON: I think our folks here in the committee actually have a different perspective as well than they are going to hear from federal agencies and others, which I think would be helpful. We will have to think how we could do it.

I think we are not necessarily bound by April 3 because it is not a proposed rule. We could certainly circulate it to everyone to start looking at it. Alex has already — I don’t want to rush.

MS. KLOSS: We just have to look at G and H. It is hard to do that out of context.

I think as it relates to the work plan, I think it is probably what we know today. We won’t commit to the HIPAA state of play hearing until we know more and probably commenting on the interoperability, Privacy and Security provisions, is a higher short-term priority.

Anything else for the good of the cause?

MS. BERNSTEIN: I missed at least one subcommittee meeting in there when I was out of town. I wondered if the subcommittee had decided. There were a couple of other issues related to HIPAA that may be don’t have the problems that the intersection with the interoperability and small business and other things that are coming along this year, ICD-10 and so forth.

We had talked at one time about taking on the issue of figuring out how to share civil monetary penalties. We had talked about whether it is worth revisiting accounting for disclosures, which is also a big —

I think there was one other topic, which is not coming to me at the moment. Minimum necessary. Standards for minimum necessary and whether — each of these I think could be helpful to OCR. They have said that they don’t really know where they are going on civil monetary penalties.

MS. KLOSS: We heard from Rachel this morning that there is going to be a document coming out. I would think that we would have the opportunity to comment on that.

I think accounting for disclosures and access logs and minimum necessary are going to come up under the context of the interoperability roadmap because they are basic foundational protections from HIPAA that just aren’t yet in place.

MS. BERNSTEIN: I was trying to stay away from those a little bit, but if they are further ahead.

MS. KLOSS: But there may be an opportunity to comment on them in the context of the interoperability roadmap.

MS. BERNSTEIN: Rachel said there is something coming out on CNPs. Good.

MR. SCANLON: Yes. It was on her update.

MS. KLOSS: She said there was a notice of proposed rule.

MR. SCANLON: ANPRN, which is kind of a request for information.

MS. BERNSTEIN: It depends on what form it is in.

MS. KLOSS: The final slide is my pitch for subcommittee development, my recruitment slide. We are looking for a co-chair. Very interesting work and certainly additional suggestions for additional members. Jim has asked that we think about others who might have an interest in the area.

MR. SCANLON: We want to add at least one more expert on privacy.

MS. BERNSTEIN: Can I put my boss on the spot? Are there vacancies on the committee at the moment?


MS. BERNSTEIN: And are there anyone who might fit that role in the offing? Are you at liberty to say whether there is anyone who might be considered for a privacy type of role for one of those vacancies?

MR. SCANLON: I am inviting members of the committee to send me any suggestions that they have for privacy as long as they are one of the specified areas of expertise for the committee. We have several openings coming up later in the spring. We are happy we just added two members. It seems to be taking longer and longer to get candidates through the process. If you have in the next two weeks maybe, let me know.

Remember, you gave us one already, Leslie. I think we need a little more geographic variation. No one from California. God bless California or Massachusetts. We have Maryland. We have Dr. Cornelius from Maryland, too.

PARTICIPANT: Did you meet Ann Walker?

MR. SCANLON: Pennsylvania is a big state. That is where I grew up.

DR. COHEN: I want the record to show that Pennsylvania is a commonwealth, not a state.


MR. SCANLON: I am serious about members. There is no such thing as a bad recommendation. Give it to me. As long as you would want to have such a person. Don’t worry. I don’t want to go through the process of nominating someone and then someone says now we already have a member from Maryland so we cannot do that. It has happened before. I would rather just anticipate. But we clearly have members. There is no pre-selection by the way. We are really open to members.

DR. MAYS: Is DC/Maryland okay?

MR. SCANLON: Virginia is okay. DC is okay.

MS. KLOSS: That concludes our agenda.

MR. SCANLON: This is the point of the meeting where we open up to public comments if there are any on the phone or in the audience. Any questions, comments on the phone or in the audience? I think we outlasted everyone.

(No response)

MS. JACKSON: In terms of atoning and clarifying the work from today, I just wanted to correct something I said about sending out a doodle poll for the review committee meeting in June. That is going to be a meeting confirmation. You will be receiving that probably the early part of next week because all that has been covered already. Marietta clarified that for me.

Tomorrow morning we start in plenary session. We have been in plenary all today. That is just how we have been continuing for anybody online.

We have already covered the action item for Population. We will be able to jump right into the Population work plan, as far as what the group is going on with this next stream and this double helix of Population is as busy as Privacy as well as Standards. Then following up on the agenda as stated. At this point, we are online and on cue for what is going on and what is scheduled for tomorrow.

MR. SCANLON: Any other questions or comments before we adjourn? We will be starting at eight in the morning. I think we are adjourned.

(Whereupon, at 5:20 p.m., the meeting adjourned.)