[This Transcript is Unedited]

Department of Health and Human Services

National Committee on Vital and Health Statistics

June 19, 2013

National Center for Health Statistics
Hyattsville, MD

Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030

Table of Contents


Agenda Item: Call to Order

DR. GREEN: Welcome to the next meeting of the National Committee on Vital
and Health Statistics. Some of us have been here for the last year and a half.
For the last two days it really had an interesting standards committee hearing
for the last couple of days, but we’ve got new faces at the table, so we will
commence in our usual manner by running the table to introduce yourself and
then declare any conflicts. Jack Burke is holding down that entire end of the
table, so we’ll start over there.

MR. BURKE: My name is Jack Burke. I’m a member of the Full Committee and a
member of the Privacy, Confidentiality, Security committee, and Population
Health committee, and I have no conflicts.

DR. CARR: Justine Carr, Steward Health Care, chair of the Workgroup on HHS
Data Access and Use, no conflicts.

MS. MILAM: Sallie Milam, West Virginia Healthcare Authority, co-chair of
Populations, member of Privacy, Confidentiality, and Security, no conflicts.

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

MS. GREENBERG: Good morning and welcome to NCHS. I’m Marjorie Greenberg,
National Center for Health Statistics, CDC, and the executive secretary to the

DR. GREEN: Larry Green, University of Colorado, Denver, chair of the Full
Committee, no conflicts.

MS. QUEEN: Susan Queen, HHS, ASPE, staff to the committee.

MR. SOONTHORNSIMA: Good morning, Ob Soonthornsima, Blue Cross Blue Shield
Louisiana, member of Full Committee, and co-chair of Standards Subcommittee. No

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

MS. KLOSS: Good morning, Linda Kloss, health information management
consultant, and I’m a member of the Full Committee, co-chair of Privacy,
Confidentiality, Security Subcommittee, member of the Standards committee, and
no conflicts.

MS. GOSS: Alexandra Goss, I’m the commonwealth of Pennsylvania health
information technology coordinator. I’m on the Standards Subcommittee. I’m a
member of the Full Committee, and I don’t think I have any conflicts.

DR STEAD: Bill Stead, Vanderbilt University, I’m a member of the Full
Committee and have no conflicts.

DR. SCANLON: Bill Scanlon, National Health Policy Forum, member of the Full
Committee, no conflicts.

MR. TAGALICOD: Robert Tagalicod, Director of Office of E-health Standards
and Services at Centers for Medicare and Medicaid Services, and the CMS

MS. BEUNNING: Denise Beunning, Deputy Director Office of E-health Services
at CMS.

DR. GREEN: Do we have liaisons or committee members on the phone?

MS. MURPHY: This is Judy Murphy from the Office of the National Coordinator,
liaison to the committee from ONC, no conflicts.

DR. FITZMAURICE: And this is Michael Fitzmaurice, Agency for Healthcare
Research and Quality, liaison to the Full Committee and staff to the
Subcommittee on Standards, and Subcommittee on Quality.

DR. GREEN: Hi Michael, welcome. Anyone else?

DR. MAYS: Vicki Mays, member of the Full Committee and member of the
Subcommittee on Populations and Privacy. I have no conflicts.

DR. GREEN: Welcome everyone. We have a substantial agenda.

(Audience Introductions)

DR. GREEN: I spot a lot of survivors over there in the gallery from the last
two days. You guys are amazingly durable. We’re glad to have you here. Let’s
dive into just a little bit of framing. I want to remind the committee that our
principle action for this meeting will come from the recommendations from the
standards committee. We’re going to follow our protocol that we agreed to two
or three meetings back. We’re at the last phases of that protocol.

What we will do is today we will have a full discussion of the proposed
letter to the secretary. You’ve seen it. It’s been months in the making. It’s
been on the public website, and we have the opportunity toward the end of the
morning where we will review that in detail. The intent of that review is what?
Everybody is supposed to know the answer to this question. Its’ that we want to
focus on the purpose of this letter, what the findings are and what the
recommendations are. We wish to extinguish your propensities to write the
letter and to edit it and to change the words and that sort of stuff in it.

That’s my personal assignment. Don’t take it personally. If we start playing
scientific writer editor, I will ask you to defer that to the capable staff of
the committee and the co-chairs. We do want to move forward with the findings
and the recommendations. We will bring it back tomorrow for final action,
giving the committee time over night, until then to make adjustments that come
out in the discussion.

In between that we have all sorts of stuff to do, and one of the more
interesting things of the meeting is often the reports we get that we’re going
to commence right now with Jim Scanlon, who’s right here. It doesn’t look like
it, but he has a lookalike, not really, who will start off his report, and
we’ll probably Jim back– he’s able to be here in the morning to continue this

Agenda Item: Updates from the Departments

MS. QUEEN: Jim couldn’t make it today because of major conflicts, but he
will be here tomorrow morning. There are two projects that I wanted to mention
to the committee that ASPE is supporting. One is a smaller estimation project
that is looking across the department as well as other federal agencies at some
of the major activities and programs that use this technique. What we held was
a meeting that involved agencies that don’t necessarily utilize the technique
to make some connections, such as an ACF with SAMHSA.

We’re going to be following up from that meeting to have– OMB will convene
a workgroup, because we had OMB attend the meeting as well, and they will have
the federal committee on statistics and methodology forum, a subgroup that will
convene periodically throughout the year just to maintain the connections. One
of the outcomes of the meeting was programs that weren’t aware of other
programs. Census was present, of course, because they have two major small area
estimation programs, which are very fruitful across the department for a lot of

We had a representative of the BRFSS Survey, and NCHS has done a lot in this
area, but there were other agencies who haven’t utilized the technique too
much. They may not have an active program, but there are going to be some
continuing collaborations as a result of the meeting. It was very fruitful.
There will be a final report, and then we’ll be convening this subgroup for the
FCSM committee. That was one. Did you want to ask a question?

DR. COHEN: One of the themes that came up in the roundtable was small area
estimates and communities are very much looking for guidance and help. As we
know, most of the data at the most granular level produced by the federal
government is really at the county level, and these just don’t work for
communities. I wonder first are communities involved or is this just federal
agencies speaking with each other, and if the answer is it’s just among feds,
is there a way first to get someone from the national committee involved as we
proceed in our discussion around empowering communities? Secondly, can we get
community input into these discussions?

MS. QUEEN: At the first meeting it was just feds talking to each other,
which we hadn’t done for, I don’t know, decades I would say. There was some
meeting back in the 70s that was all across the federal government, although
the FCSM committee does a lot in this area, has done a lot throughout the year.
This initial cut was feds, but we did have presence from SHADAC. I think
there’s certainly the opportunity in the future for community involvement.

We didn’t actually anticipate that this would be something that would be
continued. It was more to produce an initial report to look at what are all the
programs. We didn’t even know all the programs that may be using SAE
techniques. We know the big ones, but not necessarily some of the smaller ones.
We also wanted to make the connections across agencies where it might be useful
for one agency to connect with another to use the technique. I will say that
when we talk about small area, sometimes it is states, sometimes it’s counties,
so the definition of “small” depends on the survey instrument.

MS. MILAM: That may answer my question because small is not as small as
we’ve been talking about in terms of communities, but you mentioned SAMHSA as a
partner at the table. My question was with part two substance abuse data is
privacy a part of that discussion, and what have you all learned in terms of
dealing with some of them as sensitive data in terms of small area estimates?

MS. QUEEN: The SAMHSA work that’s been done that we focused on at least for
this meeting, was from the NHSDA survey, so you don’t have patient records and
you don’t have identifiable information. So the privacy issues related to part
two don’t necessarily relate to that particular activity. I think depending on
what kind of records you were using, it would certainly be a critical

The other project that– we haven’t started the contract yet but is to have
the Department look at the mosaic effect, which comes up more and more as we
have bits and pieces of different types of data systems that are out there in
the public domain and the potential for identification, re-identification. It’s
something that OMB is very interested in having us do as part of the whole data
liberation, data.gov, healthdata.gov, taking a closer look at the potential
risks and how to mitigate them beyond the statistical disclosure techniques
that are employed by the agencies that have various survey components. We’re
going to be having an advisory panel meeting. Maya is definitely going to be a
big part of that as well, but we will be keeping you updated on that and
possibly have involvement on the committee.

MS. GREENBERG: Advisory committee, are you performing —

MS. QUEEN: Sorry, not an advisory committee, a technical panel.

MS. GREENBERG: From within the Department?

MS. QUEEN: With some outside experts as well, it’s an expert panel meeting.
Pardon the slip of the tongue to advisory.

MS. GREENBERG: It seems to me the members of the committee or of its Working
Group on Data Access might want to participate.

MS. QUEEN: It will be a broad range because it will include also statistical
expertise, people that will be able to look at–

MS. GREENBERG: The BSC– actually the NCHS BSC, may have some good
candidates also.

DR. GREEN: For those on the phone and in the audience, this conversation
makes much more sense if you have looked at the report that Susan Kanaan
produced. This is part of the materials for this meeting from the population–
well, it was a committee of the whole almost running that thing. You can see
where the keen interest of this committee is headed around that, and some sort
of liaison or some type of connectivity here to what you just described, Susan,
makes sense. I’m glad you brought them up.

MS. GREENBERG: I will reassure those subcommittees that Susan is en route
from the West Coast. She’s had many plane delays and probably might be in air
right now, but she’ll be here by this afternoon, quite confident.

DR. GREEN: Anything else? We will continue Jim Scanlon’s report tomorrow
morning. Dr. Tang, who are you?

DR. TANG: I’m Paul Tang, Palo Alto Medical Foundation, member of the
committee, no conflicts. Thank you.

DR. NICHOLS: Len Nichols, George Mason University, member of the committee
and population sub-committee, no conflicts.

DR. GREEN: Nice to see you both. Let’s go to the CMS report with Robert and

MS. BEUNNING: Good morning everyone. I’m Denise Beunning. I’m Deputy
Director of the Office of E-health Standards and Services, and with me our
Director, Rob Tagalicod. We’re going to tag team this morning on the

I’m going to take you through some of the updates on ICD-10, on
administrative simplification, as well as e-prescribing. Rob’s going to update
you on some of our data privacy issues with regard to the marketplaces, our
e-health strategies, and also electronic health records and meaningful use

Let’s talk a little bit about our ICD-10 implementation, and for those
members of the Standards Subcommittee this may be a little repetitive, but as
we have the Full Committee here and also some folks on the phone and in the
audience that did not attend our previous days’ meetings, I’ll try and go
through this and keep this as meaningful but as quick as possible.

With regard to CMS’ implementation, Medicare fee-for-service, I think we’ve
heard their business processes are approximately 68 percent complete. Their
systems are 75 percent complete. Some of these systems updates are dependent on
other areas that may need to happen at the tail end of implementation. Overall
their goal is to have everything done by October of this year, with a full
year, then for testing up to the October 1, 2014 deadline.

I think as all of you are probably aware, we had some very robust
conversations about Medicare fee for services communication to their Medicare
administrative contractors last week, of their intention not to perform
end-to-end testing on ICD-10 with providers. Not only has that been a subject
of discussion here, but also at various other industry forums such as the HIMSS
ICD-10 conference that’s taking place across town this week.

I think yesterday Rob Tagalicod and Cathy Carter were here, and the
distinction was made that this is a perfect example of the firewall that exists
between CMS, the regulator, and Medicare and Medicaid, the health plans.

Those health plans are subject to HIPAA, just as any other commercial health
plan would be, and this is a business decision that Medicare fee for service
has made. They feel that they have very robust testing. Every time there is a
change request that goes through it’s a four-month process of alpha, beta, and
user agreement testing. They feel that is going to be adequate for them to
process claims with ICD-10 and have them go through the system smoothly.

That being said, I think that based on the feedback they received from the
Standards Subcommittee, also from some appearances at HIMSS, I think they left
here with the intention of perhaps revisiting having some discussions among
themselves as to whether it would be prudent to conduct end to end testing with
providers, and if so, what that might look like. I think that based on industry
feedback and feedback from the subcommittee, that they are now open to that
discussion. We’ll have to wait and see what they come back with.

In any event we’re progressing. Based on the 2014 date, again, I’m going to
reiterate the date’s not changing. We have absolutely no reason to believe it’s
going to change. I’ve repeated this over the past couple of days ad nauseam.
Hopefully the message is getting out. I don’t think we have to raise awareness
necessarily on the data. I think we have to reinforce the message that the
date’s not changing and that we’re progressing on that date.

With regard to state Medicaid agencies, we’re expecting a May report to come
in very soon here. Back in January we did a self-assessment. We polled all the
state Medicaid agencies and asked them about their readiness. We got a 94
percent response rate. 98 percent of those respondents said they’re going to be
ready for ICD-10. That’s great news, and we share their optimism, however we
all know that the word “readiness” connotes all different types of
phases and all different types of interpretations.

Our CMCS staff, the Medicaid side of the house, has been working diligently
with the state Medicaid agencies on an ongoing basis to make sure that if any
of them feel they are at risk that they get direct technical assistance from
Medicaid and from our contractor. We’ve conducted site visits to just about
every state Medicaid agency to sit down one on one. This has been a great
experience because, as I think we all know, technology is great. Skype is
great. Conference calls are great, but there’s nothing like being in the room
with somebody and seeing their faces and their reactions to questions.

Of course, some of the state Medicaid agencies are facing challenges because
they’re in the process of MMIS changeovers. Some have concerns about having to
be compliant at the same time in the midst of this changeover for them, which
is massive. We’re working with them to make sure they have the tools they need
and hopefully will have by the time we have our next meeting, I believe in
September, an updated report as to state Medicaid agency readiness for ICD-10.

Of course we’re still continuing to work with the health plans, clearing
houses, large physician practices, and hospitals. From the feedback we’re
getting from the national associations that represent these constituencies, we
feel that they’re going to be ready. These are larger groups that have the
resources to be able to make the system in business process changeovers. We’re
confident they will be in good shape.

One of the things that we have communicated just recently in a FAQ on our
website is the fact that clearinghouses cannot make coding changes on claims
that come in from a provider unless there is a specific contractual agreement
to provide that service. Even then it has to be in consultation with the
physician practice and examination of the medical record. We got the impression
out there that providers were thinking it was going to be very similar to the
50-10 transition, where a clearinghouse could “clean up the claim”
and have it go through. Well, that’s not allowable with ICD-10. The
clearinghouses are making that known as well. We don’t want providers to be
surprised when all of the sudden the clearinghouse comes back and says we can’t
do that.

We’re providing small physician practices with additional technical
assistance. I think there was a comment before: what constitutes a small
practice? We’re talking about the one, two, three provider practice in Beloit,
Kansas, the ones that are having problems meeting not only ICD-10 but also all
the other demands that are being put on practices. We’re on the ground. We have
provided training to the RECs to go out and speak to small providers on ICD-10
and how to get over the hump, so to speak. We’re doing a lot of outreach
education, webinars, conference calls, and thousands of providers are

We’re amazed at the number, when we put out a conference call line, we get
sign ups of 3,000 to 4,000 providers at a time all listening in. We definitely
know the interest is out there. We’re going to continue to work that small
provider constituency as we move forward towards the 2014 deadline.

Of course we’re encouraging vendors to have discussions with their customers
about what their intentions are with regard to ICD-10 installations. I think
we’re starting to see again the integration of ICD-10 beyond the silo approach
that we have to admit CMS has taken in the past. I think we’re seeing it more
integrated. We’re hearing about one particular vendor who is offering an
electronic health record, and also integrating it with ICD-10 and guaranteeing
that whoever purchases their EHR system will be compliant.

If they’re not, they would pay any penalties that might occur from that
non-compliance. An innovative marketing approach to be sure, but again I think
we’re starting to see integration. Of course, it’s significant that ICD-10 was
included in meaningful use stage two. We’re starting to see the convergence. I
know Rob will address this in a few minutes, but we’re starting to see the
convergence of all these different e-health initiatives.

That’s where we are on ICD-10. Administrative simplification, I know this is
one the health plans are eagerly awaiting. This is a proposed rule, CMS 0037.
This is the one; the administrative simplification requirement under section
1104 that requires health plans to certify to the secretary that they are
compliant with certain operating rules and standards both in 2013 and 2015.
This regulation goes into CMS clearance this week. What that means is it’s
starting the clearance process. It will go through all the CMS components and
all of our OpDivs comment. We’ll get it back. We’ll revise it. It will probably
go out for a second round of clearances until it is finalized and then it will
be published. This is a very long and thorough process, so don’t expect it out
next week. Somebody asked me the other day, so in like two weeks? No, maybe

In any event, we are really seeking industry comment on this one because I
think that obviously Congress’ intent as we interpret it is to move everybody
forward very rapidly on administrative simplification. I know the health plans
are concerned because of the penalties associated with non-certification
compliance. That’s not compliance necessarily with HIPAA. That’s a different
animal. It’s the failure to certify or to misrepresent a certification. The
fines are very onerous. We’re seeking lots of comments on our documentation
requirements, on the timing of it. I can tell you we have pushed back the
dates. This is in recognition of it trying to align in other initiatives that
dovetail off of it, and also to reduce provider burden. We’re looking for lots
of comments on that.

Operating rules, internally we’re taking an approach similar to what we took
on ICD-10 where OESS is a program management and budget coordinator for the
agency. We’ll work with the various CMS components on that basis to help them
to integrate operating rules into their systems and business practices and work
towards getting that done. I think you’ve heard from CAQH CORE, their work on
surveying the health plans for workgroup input and solicitation.

Claims attachments, we mentioned to the subcommittee yesterday that while
waiting for the recommendation from NCVHS, and we’re going to hopefully
coordinate that with the timing of meaningful use stage three. There are some
common standards we believe those two are going to share. We’re going to be
looking for that. Then of course the health plan identifier, the HPOES system,
is up and running that allows health plans to determine their status, whether
it be a controlling health plan or a sub health plan, and obtain an HPID.

We do have some activity on the system, but quite frankly, most of the
health plans are still waiting to see number one, the health care certification
regulation that comes out. That has some interdependencies with regard to the
way they enumerate. I think as we get that out and as health plans start
progressing towards next year that we’ll see many more of them enumerating in
that system.

Finally, let’s talk a little bit about e-prescribing. I know that
e-prescribing is not necessarily an e-HIPAA standard, but it’s a part of the
e-health spectrum, and it’s one that, because it’s voluntary, although it’s
required as part of EHR meaningful use, there are some really exciting things

The physician quality reporting system is as system that we have in place,
and basically what it does is allows eligible professionals to report on
quality measures. In 2011, which is the report that’s just come out, we had
almost 280,000 eligible professionals, i.e. physicians, and we paid out a total
of $261 million in PQRS instead of payments.

Electronic prescribing, again 282,000 eligible professionals in the program
in 2011. 116 percent increase over the previous year, paying out $285 million
in ERX incentive payments. There were 136,000 eligible professionals that were
subject to a payment adjustment. Either they didn’t qualify, didn’t meet the
criteria or didn’t meet the reporting requirements in the first half of 2011.
There’s a link to the full report at the bottom of that slide.

Finally on e-prescribing something that we’re kind of excited about, both on
a professional and personal level, is the NCPDP script electronic prior
authorization standard, which was validated and passed by NCPDP last May with a
wide range of support from folks in the industry, especially AMA. It’s going to
a board vote next month, and in November it will be going before ANSI for
accreditation. This is something we’re going to look at. If you’ve ever had to
sit in a doctor’s office waiting for a prior authorization, sometimes for a
parent or for yourself, you know how long and tedious and frustrating that can
be, so this is very exciting.

Of course, coming up in October, the adoption of script 10.6, we’re going to
retire 8.1, and finally the exemption for long term care e-prescribing is going
to be lifted next year. We are going to be proposing adoption of a newer
version of the formulary and benefit transaction in the upcoming physician fee
schedule regulation. That’s it for those particular topics. I’m going to turn
this over to Rob Tagalicod who’s going to take you through EHR meaningful use.

DR. TAGALICOD: OSC will follow here so I won’t dwell too much on the EHR
incentive program meaningful use. We work very closely together. We clearly
oversee, meaning CMS clearly oversees, the Medicare and Medicaid EHR incentive
programs. We work with ONC in terms of certification, and we work together in
terms of rule making, as they go in tandem. However, top line in terms of
payments, as of just a couple of months ago, there are roughly 395,000
providers with active registrations in the incentive programs. To date, we have
at the last report, April, $4.16 billion in payments that have been distributed
to 295 providers in the program.

The other development is really about the audits. I think a lot of you have
seen both in the news and in briefings such as this the desire to ensure that
those who attest meaningful use are in fact meaningful users. In response to
GAO reports to OIG and the FBI and then some, as well as the department, have
instituted both pre- and post-payment audits to ensure that providers that
received a 2013 payment are in fact, again, meaningful users, and going into
that period where it converts from the carrot to the stick in terms of premium

Just a very top-level description of the audit program, we are doing clearly
a random as well as targeted auditing. We’re focused on target auditing because
it will inform other kinds of auditing such as random sampling. Right now,
approximately 5-10 percent of providers will be selected, or have been
selected, for pre- and post-payment audits. Again, if the provider is found
ineligible, either payment will not be issued, again from a pre-payment
perspective, or it will be recouped, in terms of post-payment. I have to say at
this point in time, there’s nothing to report to this particular committee
because it’s really too early to draw any conclusions. Again, we’re in the
process of refining our audit strategy.

In terms of data privacy, I think it’s really important– I think the last
time we reported, OESS was clearly comprising two groups, administrators and
simplification group, and the HIT initiatives group, as part of reengineering
or reorganization. We clearly included the privacy functions within CMS into
the Office of E-health Standards and Services. The reason being we can’t simply
look at privacy from an information security point of view, although that’s a
component of it. We needed to take a broader look in terms of going forward,
all the lines of business that CMS does and ensure HIPAA and privacy are going
forward and beyond legislation because we are now looking at a new world of
interoperability and big data, et cetera. Not all legislation did not
anticipate that world.

Nonetheless we are assessing with the Office of Civil Rights the HIPAA
Omnibus rule, and more clearly we have been engaged in the health insurance
marketplaces. We’d been brought in about a year ago, and we’re establishing
with our federal partners, privacy acts, citizens of records, and negotiating
multiple computer matching agreements to ensure that when the exchanges are
live, or rather the marketplaces are live, that we ensure those agreements are
in fact in place and ensure the privacy and information security concerns.

Lastly, I think what is also very important, and this is reflective of some
of the discussions yesterday regarding alignment, better use of resources, and
officially last– a few months ago at the last HIMSS meeting, we officially
launched Enterprise E-health, or the E-health initiatives. I don’t want to
confuse it with e-health initiatives that are out there. It is a CMS
initiative. It is really to optimize the alignment and leverage the policy
levers that CMS clearly has in terms of its policies, both payment policies and
policies writ large.

These are the alignments and these are the levers we’re talking about,
administrative simplification. Again, I think you’ve seen that kind of
alignment in terms of rule making where meaningful use stage two does refer to
ICD-10, and as I reported yesterday, clearly looking at meaningful use stage
three and making a closer connection with ICD-10 and administrative
simplification writ large.

This also includes a better alignment across HHS with the department, as
Susan and Jim can attest to, working with all federal OpDivs and StaffDivs such
as HRSA, CDC, IHS indigent health service, et cetera, in order to align them
better in order to meet the requirements of ICD-10 next year. We’re aligning
them clearly, as I said, with the Medicaid/Medicare EHR incentive programs,
electronic quality measures and reporting, and as reported at HIMSS ’13, the
desire for the clinical standards and quality center in CMS, which oversees
PQRS, IQR, all the other quality programs, works with other components
regarding ACOs, to ensure that kind of alignment. If you come in and qualify
for several of CMS’ programs, then you only would come in once and hopefully
report once. At the end of the day you may qualify for several programs, and
then there are pluses and minuses and you get either a check or a payment
adjustment, hopefully a payment.

Also we’re aligning health information exchanges. One of the things that
we’re working with ONC as well as internally with CNCS Medicaid is those
policies that will incent or support information exchange, and what we’re
really talking about is interoperability, so that we can do, as we discussed
yesterday, the kind of gate exchange in order to do not for its own sake and
not simply for research but actually to achieve what we’ve been saying is the
Triple Aim, better care, better health, at lower cost without compromising the
quality of that care or patient safety.

As I was saying, privacy and information security, that’s part of the
bailiwick within OESS and again as I was saying the health insurance
marketplace. It remains clearly CCIOs that centers, but we work very closely
ensuring that the marketplace will ensure privacy and information security.

Again, we work with other federal partners beyond CMS to ensure that. One of
the things that we did talk about yesterday was how do we — talking about
ICD-10– how do we get to the smaller providers? How do we get to the road map?
Again, that is part of our enterprise strategy. The enterprise strategy is
really four-fold.

One it’s within CMS to better coordinate the centers and offices in terms of
their endeavors regarding e-health, clearly with the department, the OpDivs and
StaffDivs clearly again, in ICD-10. One, working with other components beyond
HHS, so for example FCC and FDC in this world of mobile health that we’re
anticipating, and clearly with our public and private partnerships, people
around the table, associations, colleges.

That is our enterprise strategy. Again, that is basically it. Any more
information, here’s our contact information, and our apologies, we got this a
little bit late, but it will be posted to the website.

DR. GREEN: I can’t imagine given how little you’re doing, how you could
possibly be late. It’s an amazing report. There’s a lot going on. Dr. Walker,
welcome. Can I ask you to introduce yourself and declare any conflicts?

DR. WALKER: Jim Walker with Siemens Corporation, no conflicts.

DR. GREEN: Glad to have you here. So questions?

DR. CARR: Really great report. For Denise, following on the readiness of the
state Medicaid programs for ICD-10, I think it was a year or more ago when we
really heard a tremendous amount of concern about the readiness. I’m curious
what contributed to the readiness. Was it the delay or were there other things
that accelerated their preparedness?

MS. BUENNING: I think there are a number of issues surrounding readiness.
Again, the interpretation of what that means among the different state Medicaid
agencies and the years delay, obviously impacted a number of State Medicaid
programs because of their conversion status. Some of them were actually going
to make the conversion to ICD-10, and then when it got pushed back it
conflicted with their MMIS transformations, which again basically is their
entire system being revamped and revised.

I think that a number of things have happened in the interim. Number one,
CMCS, as well as OESS, as well as the Secretary, as well as Administrator
Tavenner, all have reinforced the fact that the state’s not going to change. I
think given that assurance they had a clearer road map. They could go back to
either their legislatures in some instances, or their authorities and say,
listen, we’ve gotten the confirmation. This date is solid. We have to work
towards this.

I think that our technical direction, basically sitting down with each one
of the state Medicaid agencies and going through and saying what are your
issues, what are your deficiencies, what are your concerns, and trying to help
them mitigate that risk either through contractor support, actually having
contractors sit down with their systems people, or going through their business
processes with them, and also lessons learned.

We have an enormous amount of resources out there for the states. Not only
do we have the self-assessment checklist that they can take on a regular basis,
but also we have a portal where they share best practices. We have bi-weekly
calls where all the states get on the phone with each other and share concerns.
I’m working with one vendor. I know someone in another state also has that
vendor under contractor. Are you experiencing the same issues or problems? Have
you resolved it with them? Can we learn from that? I think CMCS has really done
an outstanding job of keeping on top of this and trying to keep the momentum

DR. CARR: That’s fantastic.

MS. BUENNING: That’s not to say that we’re not keeping a close eye on this.
No one wants to be the one that raises their hand in the room and says well,
we’re not going to be ready. We have gotten some indication from some states
that they are anticipating some problems. Again, we are being proactive now to
try and come to some risk mitigation with them. We’re keeping the trains moving
on this one.

DR. SUAREZ: Thank you for that update. I have a quick comment and a
question. The comment is about the alignment of programs in the quality arena.
Some of you, many of you, might have seen the recently published Notice of
Proposed Rule on the Medicare Hospital in-patient prospective payment system,
the Medicare Hospital IPPS, 1,500 pages of regulations. Embedded in the
regulation were two major components. One was the revision to the IQR, the
In-Patient Quality Reporting Initiative, which I think was a terrific set of
recommendations to align quality measurement for in-patient care.

The other one was a section that focused on inequality and the adoption and
start of the use of equality standards for exchanging, submitting quality
measures. I know comments are due later next week or something like that. It’s
a massive initiative as a regular IPPS, but it is going to include significant
pointers on quality and equality specifically. I think a lot of alignment.
Because the train is moving, of course, and while we are thinking about other
things programs are still running. It’s a very good opportunity to begin to
align this.

The question is about the RFI that was published back in April jointly by
CMS and ONC. It might be also a question for Judy later. This was an RFI– we
were all at HIMSS 2013. There was a joint announcement about the RFI on health
information exchanges and interoperability. I wonder if you have any sense, and
certainly there’s probably a lot of input, a lot of feedback, a lot of
comments, a lot of themes coming out of those comments that people sent, but if
you could say a few words about the status of the output of that.

MR. TAGALICOD: I know that Judy is on the line, but I’d like to offer a
couple of top-liners. One of the things that have come out is the emphasis on
standards, standards, standards. When we’re talking about interoperability,
we’re talking at several levels. Even though some of the comments we’re not
specific about, what levels or kinds of interoperability, we’re talking more
than simply a platform talking to another platform. We’re also talking
about—and again, this is related to the quality measures and other
measures, which is that it’s both semantics, syntactic, and all those things.

When we say what a quality measure is, we know what the numerators and
denominators are across all these programs, and we’re agreed to what those are.
I think part of it is it’s a bigger picture than just a technological one.
That’s one.

The other piece, too, and I think Judy can speak to it, is the emphasis of
including the consumer in that exchange, in interoperability and health
information exchange. One of the things that I’ve seen ONC and, again, my
apologies to ONC for stealing their thunder, but what was really compelling was
how do we include information from a consumer as part of the record as part of
a conversation in order to do better health? Again, it’s beyond the technical

Then how do we leverage other things that current initiatives like Blue
Button, Blue Button plus? Those are the kind of things and working with other
parties, third parties, in order to make sense of a data stream so that my
mother, for example, or whoever can say, yes, this makes sense to me. By the
way, my mother is one of these seniors who makes sure that she gets what she
presumably pays for, and say, yes, I paid for that, or by the way, I didn’t
receive this information or this service and I need to report it to somebody.
That was an actual case. But again, using that kind of information that’s
available already and then participating in the Three-Part Aim.

DR. SUAREZ: Will there be a rebranding? I know this was an RFI to provide
input to CMS and ONC, but will there be a summary report of this coming out?

MR. TAGALICOD: Yes, in fact, we’re reviewing it right now for the general
public discussion.

DR. SCANLON: Thank you very much for the very helpful update. This should be
a quick question. It’s about the PQRS, which I know got off to a slow start,
and it’s gratifying to see that you have 280,000 participating. Any sense of
what the denominator is so we can know what the participation rate might be?

MS. BUENNING: I always look forward to these meetings, and I kind of
speculate how many questions I’m not going to be able to answer. This is one of
them, so you win the prize. I will get back to you on that. I honestly do not

DR. GREEN: Alix, and then we still have Judy on the phone. Judy we’ve got
your slides up and after Alix’s question we’ll move onto your report.

MS. GOSS: Rob, you made some comments about meaningful use audits and it’s
currently too early to really give us a report, but you noted there were some
refinements of strategies being considered. In the Commonwealth of Pennsylvania
we’ve been having some audit results that have bubbled up to a statewide level
of discussion, some concerns, although we are coordinating with Elizabeth
Holland to give her examples and good feedback. I was wondering if you could
speak to what did you mean by strategies being refined and what should
stakeholders stay tuned for?

MR. TAGLICOD: Sure, in terms of a process we use targeted auditing. We make
certain assumptions regarding an audit protocol. We have that discussion with
our contractor in order to do that. Part of the process is really the target
auditing. We learn certain things. This is where I hesitate to go into any
specific examples because I’ve been cautioned not to go into specific examples,
and we’ve actually asked our partners like ONC not to talk about specific

Nonetheless, as a matter of protocol, we learn from those and adapt them.
The question is do we continue with targeting protocols, for example? Or do we
get into a situation where it is random sampling in order to do that? The
random sampling protocol will be informed by that. To go into any more
specifics is to lay out what those protocols are. Honestly speaking, there may
be bad actors, and to get that out in a public forum will give a little bit
more information than we really intended.

MS. GOSS: Thank you. I think it’s from a provider perspective. There’s a
growing concern about the results of the audits and how that’s disincentive to
meaningful use stage two adoption. The initial auditing process is revealing
some disconnects between the initial regional extension center guidance and the
auditing rules of the road. I think this might be something I’d like to hear
about at a future meeting.

MR. TAGLICOD: If I could simply comment, we’re very sensitive to that
because the unintended consequence is to suppress meaningful use. We want to
make sure in terms of our messaging, in terms of the protocol itself not to do
that or mitigate that.

DR. GREEN: Thank you. Judy?

MS. MURPHY: Absolutely, so if you could get my slides up. Can you hear me
okay? I’m hearing some echoing, but that might be because I’m hearing back the
speakers in the room.

DR. GREEN: We’re good.

MS. MURPHY: So to go to the next slide, Rob keyed this up absolutely
perfectly. In terms of statistics, we reached a milestone in April for eligible
professionals in terms of being registered and paid. You see the statistics in
front of you, 56 percent, so we did pass the 50 percent mark. Again, just to
note so there’s no confusion, these are professionals paid though either the
Medicare or Medicaid program. Again, the Medicare program would be for
attesting to meaningful use, and the Medicaid program could be for A, I, or U,
adopt, implement, or upgrade. They could be on the journey and not actually at
the point of testing, so just to be really clear about that 56 percent.

If you go to the next slide, here’s what we look like as the trend over
time. Again, you can see pretty much over the last year that we’re actually
going up pretty dramatically. This is our hospitals registered and paid. Again,
hospitals have been doing significantly better, but these are registered and
paid for either the Medicare or Medicaid program. Again, it’s A, I, U,
potentially on the Medicaid side, but we’re at 77 percent.

Again, the trend slide, just to show how it’s been looking over time is the
next slide. As already mentioned, if you go to the next slide, the $14.6
billion that’s been paid out, and again, this is a graphic month over month
starting with the first payment from January 11. You can see here how it’s
really increased over time and accumulative total. You may recall $14.6 billion
is out of the total of approximately $20 billion. We’re actually doing quite
well in terms of the overall payouts.

If you go to the next slide, you’re not supposed to be able to read this
unless your print out is large, but my purpose here is to really show you that
we are tracking both hospitals and providers at the state level. I just sort of
amalgamated this into one slide, and you can squint and look at the colors, but
basically the less orange and the more green, is a positive sign for a
particular state. This is as compared to the average, the national average, so
how much better are they doing or how much worse are they doing? Again, dark
orange is “bad” and dark green is “good”.

DR. GREEN: Judy, time out, we’re trying to get the slides reorganized.

(Discussion of reloading slide deck)

DR. GREEN: Judy, are we on the right slide now, scorecard reports for
medical acceleration?

MS. MURPHY: You got it. So this is again one of those unintelligible slides
that you’re going to think, oh wow, she’s really smart because this is a lot of
really cool statistics, but really the purpose of this is not specifically to
look at individual states but to get a sense of the variability between states.
Hospitals are on the left; providers are on the right, state by state in the
rows. The darker the green, the more positive the state is doing in terms of
the national average. The more orange, the more below the national average
they’re doing. Again, the only purpose is to give you a sense there’s quite a
variability state to state. A big shout out to Delaware, and they have seven
hospitals and all seven hospitals have attested to meaningful uses, but I think
these statistics are just potential, so that might not represent that.

Okay, if we go to the next slide, now that we’re at the right slide deck,
this is one that I find quite interesting in terms of looking at how we’re
doing related to the depth and breadth of EHR implementation. I think many of
you are familiar with the HIMSS electronic medical record adoption model. Stage
zero of that adoption model means you basically have almost nothing. Stage
seven means you have quite a complete EMR, and in fact are doing some of the
more mature things. As of 2013 Q1, you can look at those statistics. If the
person doing the slides hits enter you’ll see there’s a clustering at stage 3.

There’s a clustering around stage 3, which is where the majority of the
percentage really fits. If you hit enter again, you see there’s 42 percent
above and 22 percent below. What I’m going to do now is show you a comparison
to that. If you hit enter again, you see that going back to 2011, and these are
the oldest statistics that I had access to, the clustering was still at stage 3
at 45 percent. You can see a dramatic shift in the percentage that were at
stages 0, 1, and 2 as compared to stages 4, 5, 6, and 7 just from a percentage
standpoint. Again, this is another metric. I think many of you probably know
the criteria for their adoption model does not exactly parallel on meaningful

Meaningful use is pretty much a floor, and some people would say it’s not a
floor because CPOE is maybe a push, but if you look at things like closed loop
medication administration, physician documentation, full physician support.
There is a pretty good shift towards those stage 6s and 7s at a greater
percentage at those levels as well. I think that overall we’re doing really
well in moving this agenda. That was the purpose of me including this
particular slide for your information.

If we go to the next slide, I’m going to shift gears a little bit to talk
about exchange. In the exchange space, we’re not doing quite as positively as
in that meaningful use put in the electronic health record. This has certainly
been the focus of a lot of public attention, including folks up on the Hill
really concerned about the fact that we’re not moving the needle on exchange.
Again, many of you who have been following the stage 1, stage 2, stage 3
criteria, you know that at stage 2, which is the first implementation and
attestations will be in October of this year, we’re really pushing the exchange
agenda of the stage 2 criteria. I think we’re going to see these needles move a
lot. I’ve got some statistics here. Since I submitted this slide deck last week
I did get some additional statistics from Q1 of 2013. We see an increase in
both the directed exchange transactions and the query-based exchange, but it’s
not dramatic. We’re not seeing an additional hockey stick up to the right, but
we are continuing a steady gain.

If we go to the next slide, here’s where I’ve outlined the stage 2
meaningful use criteria that do focus on interoperability. Some of these are
menu sets, some of these are core, but again, I think you can see that we’re
really as a nation saying we have to step up this ability to connect in between
our electronic health records. Now we have to start having them talk to each
other. I’ll draw attention specifically to the second bullet, transition of
care summary. Not only do you need to be able to create and transmit from your
EHR, but you also need to be able to receive and incorporate into your EHR. One
of those transactions has to be from an organization and a vendor that is not
your own. You do have to do cross-vendor exchange at that.

Then if you go to the second-last bullet, another pretty heavy lift is the
patient’s ability to view, download, and transmit their health data to a third
party. This is again the patient capability similar to what you were talking
about just in the previous section with the CMS report. Patients taking
increasing accountability or using a portal, for example, could be a personal
health record, to look at their information and then the ability to extract
that downloaded and either transmit it to a spouse, transmit it to another
provider, transmit it to an untethered personal health record, again, quite
different from what we were really looking at with stage one.

If we go to the next slide, I wanted to advertise a little bit this
interoperability stuff has been confusing at best to many. What ONC put on
their website were some training modules that were specifically targeted to our
provider implementers, if you will. The target here is not the vendors and what
the vendors need to put into their software, but rather it’s targeted at those
who are implementing for providers or for hospitals and helping them to
understand what they need to know about this exchange, what they should be
expecting to get from their vendor versus what they have to think about how
they want to manage.

Again, this is EHR to EHR, so there’s an increasing accountability for the
implementers themselves to understand HISP for example, the Health Information
Service Providers, and how they’re going to be moving items, if you will, or
CCDAs from one electronic health record to another. This is one specific
criterion where attestation actually includes something that’s a bit different
than what the vendor’s doing for certification. The vendor is certifying that
they have a capability of doing exchange, but then for attestation the provider
or the hospital actually has to show that they are doing the exchange.

That’s all spelled out. There are five modules. Interoperability basics is
the first of those five. It is a self-paced learning module, and if you go to
the next slide there are four additional models for each of the large chunks of
interoperability and data exchange criteria, so the transitions of care; the
lab interoperability; the view, download, and transmit; as well as the public
health criteria. Each one of these modules is self-paced, but they take about
an hour. They’re pretty complete.

If we go to the next slide, I wanted to give a quick update on the Beacon.
Again, some of you are probably aware of this, but as of March 31, that was
really the official end of the Beacon program. As of that date, two Beacon
communities actually did begin their grant close down period, and that’s
Indiana and Rhode Island. The remaining 15, because there were a total of 17
Beacon communities, applied for and received six months, no cost extension from
their grants. That extension period goes from April 1 to September 30. Again,
no additional monies were included in that, but they’ve got some additional
time to spend the money that they received initially and to achieve the
outcomes they had set out to achieve.

The only other thing I wanted to talk about related to Beacon is Beacon
nation, which is being shepherded through the Hawaii Island Beacon community.
They took some of their money, and what they’re doing is putting together a set
of materials for dissemination broadly in the nation, describing promising IT
enabled interventions where there was experience through the Beacon community
experience, and sharing that experience and creating the capability and
instructions, if you will, on how to deploy that in other communities, and
giving them a leg up so they can actually accelerate the change.

If you go to the next slide, it’s a screenshot of the Beacon nation website.
The first learning guide is listed on the first bullet on the screen, which is
to improve hospital transitions and chronic disease care management using
ADT-based alerts. That’s the only one that’s available. You can see the
remaining five are listed there, and their publication dates or target
publication dates are listed July and September. Again, I’d really draw your
attention to those, because we really want to make sure those get widely
disseminated. The first one is somewhere around 85 pages. It goes into a fair
amount of depth in terms of how a community could replicate the experiences
that were seen through the Beacon experience.

If we go to the next slide, you’ve seen graphs that look like this before.
This is our workforce training. They’re also in grant close down period,
finishing up the last cohorts of students. You can see the statistics on the
screen with each of the five college consortiums and how many colleges were in
each and which students have successfully completed and which ones still have
active enrollment. If you go to the next slide I just wanted to share some
statistics in terms of the demographic characteristics, because I personally
found these interesting when I saw this particular slide. This shows based on
the community college consortium the percent of minority students and then the
mean and median average age.

I have to tell you I was surprised, as I’m assuming maybe some of you are. I
find this kind of interesting that we’re probably reaching a set of students
that we wouldn’t have reached in any other programs that are being offered
today, so it’s pretty exciting there. If we go to the university-based
training, which is the next slide, you can see the statistics of these nine
programs, and the cohorts are still in motion, graduated, and enrolled, and
each one of them did have a target. You can see where their targets are listed
there as well.

If we go to the next slide, wrapping up a little bit kind of quickly with
the policy and planning side of the house. I think many of you are aware the IT
patient safety action and surveillance plan was out for public comment earlier
this year. We got all those comments. We amalgamated them, and you can expect
to see the final product, if you will, rolling out in the not too distant
future: There were also some funding announcement and funds granted in two
areas related to HIT governance. Those are cooperative agreements actually, not
grants. One was given to Direct Trust, and they’re looking at directed
exchange. The second one was given to the New York Collaborative, and they’re
looking at the query-based exchange.

Those awards were made fairly recently, so there are not a lot of things to
talk about in terms of the activities that we’ve seen as yet. Maybe at the next
meeting I can give an update on that. The third thing is what got talked about
already, and that was the health information exchange acceleration announcement
that was made at HIMSS and the RFI that was put out, and I believe Rob already
mentioned we’re correlating those comments and that there will be a summary
published in the not too distant future.

If we go to the next slide, wrapping up with the standards area, some
statistics again, in terms of the S&I frameworks. These are the operating
metrics that Doug Fridsma and his shop have started looking at tracking if you
will, in terms of timing, participation and process, a number of
wiki-registrants, et cetera, and then what are some of the outputs. This is a
nice new way of looking at the S&I framework work.

I believe most of you know this is how we are currently evolving our
standards. It is a consensus-based process. Although it takes a fair amount of
time because it’s consensus-based, it’s also through the S&I framework
we’ve been able to cut down some of the time frames that used to take maybe up
to three years to develop a standard. We’ve got that down to about a year, and
in some examples six or nine months as well.

If we go to the next slide, in terms of looking at each initiative and where
those are handled, you can see in the lower right hand corner the status key,
which ones are actually active, which ones are more in maintenance mode, and
which ones are actually on hold. The next slide you may have seen before
because that’s one we have been using where each initiative is looked at as a
row, and then the different phases that those initiatives go through from
pre-discovery to reference implementation, testing and piloting, and then to
the evaluation phase. Again, the purpose of this slide is not to redo all this
text, but to give you a sense that some initiatives are farther along than
others. Of course the farther the bar goes to the right, the more it is

Last but not least, wrapping up with a map of the United States, and this is
a map that I have in this current slide deck, which shows some of the S&I
pilots, geographically where they’re located around the country. Again, you can
see our active pilot sites. With that, and I know we are always under a time
crunch, I will go to my absolute last slide in terms of certification and talk
briefly about the certified products. What I neglected to put in here, I see
now, is the products and vendors that have been certified at stage 2. That
number is about 85-90. What you see here includes stage one. It is
accumulative. It’s going a little bit slower with the products and vendors
getting certified to stage 2.

My last slide is just a thank you, and if we’ve got time I’ll open it up for

DR. GREEN: Thank you very much. Before we take questions here, is Katherine
Marchesini on the phone.

MS. MARCHESINI: Yes, Katherine is here. Can you hear me okay?

DR. GREEN: Do you have a slide deck we need to get up?

MS. MARCHESINI: I do. I sent it ahead of time. Let me know if there are some
challenges with getting it up.

DR. GREEN: We’ll proceed to put it up, and we’ll have questions here.
Justine is first in line, then Bruce.

DR. CARR: We have a little confusion here about the students in these
colleges that are 79 years old, three regions, and the maximum age. That seems

MS. MURPHY: It seemed surprising to me, and I have not had a chance– this
is new, fresh off the list– and I have not had a chance to go back to the
program and say is this for real? It certainly is I believe for real.

DR. CARR: 79 is the new 60.

MS. MURPHY: Yeah, and I think some of these folks are obviously not planning
on working; they’re just getting additional knowledge, but even still.

MS. GOSS: I think that average age very much aligns with the average age of
students in community college programs.

MS. MURPHY: Overall? That is interesting.

DR. COHEN: Judy, hi, this is Bruce Cohen. I’m co-chair of the populations
subcommittee. Your report on the Beacon communities was really intriguing. I
would like our activity, particularly around our roundtable around health data
needs for community-driven change– I think we could learn a lot from the
Beacon communities. We had one Beacon community to participate actively, but
I’d like us to align some of these activities better. With whom should we be
following up around the Beacon communities and integrating them into our
conversation about community-driven change?

MS. MURPHY: That would be great. Just reach out to me individually, and we
can take somebody up, if you will, maybe both from ONC as well as a Beacon
community representative to sit in on your group.

DR. COHEN: One other quick question, and that had to do with meaningful use
stage three. Are there any updates around timing around that?


DR. COHEN: Thank you. I didn’t know how many people had asked that question.
None was probably the right answer.

DR. MAYS: Judy, great presentation, thank you very much. I have a question,
which I think may or may not be on point, but I want to see if I can get an
answer to it. When you were going through your presentation, I was struck by
the time and energy we’re putting into looking at EHRs and other things in
terms of trying to make sure there is operability there. One of the things I
wanted to ask about is the extent to which the federal government is looking at
the same thing in terms of a lot of the apps that we’re developing both at the
level of clinics and hospitals to managed care.

As I understand it, it’s kind of a free market. The ability to be able to
use those things, which NIH and NSF and others are putting a lot of money into,
is not very great. We’re developing a lot of apps, but they aren’t in line with
the platforms that are the platforms that are being developed in terms of EHRs.
Can you comment at all on that?

MS. MURPHY: Sure, I know ONC is having a couple of challenges. There’s one
going on right now about pressure ulcers and risk assessment for pressure
ulcers. One of the requirements of that mobile app challenge is that it has to
use standards and it has to be able to connect to an EHR. That’s one example.
In other words, if a nurse is going to do a documentation of a wound, and the
interventions for identifying risk and/or preventing pressure ulcers, it has to
be within the normal documentation that she or he does. It can’t be outside on
a mobile app that’s now not accessible to the electronic health record. That’s
one example.

A second example is i-blue button, which was a challenge that was put out,
and that was using a mobile app to access Medicare information. That was back
in November, December of last year. That used an application-programming
interface if you will, to go at the information that’s already available on the
web. It’s a different type of standard, but it did require not the creation of
new information, but pulling information from an existing web app into a mobile
app. That was actually a challenge that was won by Geometrics, and they have
made their i-blue button application available for both the iPhone and the
Droid for free in the app store.

It’s actually kind of exciting that people are identifying that we shouldn’t
be creating lots of applications that aren’t connected, but in fact thinking
through which ones should be connected and which ones shouldn’t and why. I
think we’ll still see a proliferation. This is an innovative market place.
There’s always going to be some applications that are more free standing, but I
think there is a recognition from the industry as well that it’s important to
make sure that if it’s appropriate that it gets hooked into the core
infrastructure for this interoperability purpose.

DR. MAYS: This may need to get to NIH because that’s where a lot of the
development is going on that’s going to be classified as evidence-based.
Unfortunately, there’s no guidance or directions that it has to be developed to
any of these standards, just so that you’re clear.

DR. GREEN: We’re going to go to Walter and then we’re going to move on to
Katherine and Rachel.

DR. SUAREZ: Hi Judy, thanks for the update. I’m always so impressed with the
level of detail of metrics that you always show us. It feels like it’s a big
data project, and good data analytics and all the things that are being done
are measured and there are metrics for everything, so it’s wonderful to see
that. I have a quick comment and a question.

The comment is about the recent announcement that in fact actually tomorrow
is a WebEx, a webinar, of the formation of a European Union and US e-health
cooperation initiative, which I think is a terrific activity as we really look
at how this is already global and not just US-centric, so if you could make a
quick comment on that. Then the other question, or the question I have and it’s
really what keeps me up at night is you mentioned in a number of areas how
things are at close end or closing down or in no cost extension.

I’m really worried. I’ve been bringing this up periodically. I’m really
worried about the fact that we’re going to see a time when there are so many
important programs ending at the same time it’s going to create a significant
vacuum in the ability to support the ongoing activities of national and
regional programs. There’s the RECs, the Regional Extension Centers, ending,
the HIE grants ending, the Beacon communities ending, almost at the same time
or within a close period. I’m worried about that, and I wanted to ask you what
keeps you up at night, I guess, with respect to that.

MS. MURPHY: I worry about it, although I worry probably less than you
because at least I’m in a position to start thinking about how to organize
ourselves. You know that we had about $800 million, and we’re going to zero.
Our appropriated budget, if it stays as it is this year, would have very little
ability to absorb any amount of cooperative agreements or grants to any of the
existing programs.

We have an appropriated budget, which keeps our staff in tact, but that’s
it. We need to think about how do we sustain the activities that need to be
sustained because the communities and the industry needs them, using more
convening kinds of activities, which are more in the volunteer space, if you
will, than in the we’re providing direct dollars to people to do different

That’s what ONC is doing. We’re thinking about how we’re going to pivot our
organization from being a grant and grantee management shop, to being a
convener shop, organizer, helping disseminate kind of shop.

In addition to that, of course all the grantees have to be thinking about
sustainability. Before they had money, they had sustainability actions, if you
will, and initiatives going since the beginning. They knew this money was going
to be going away. What activities are they going to charge for? What is going
to be their revenue stream? What are going to be their operating expenses?

This is something many of them are thinking about, particularly when we talk
about the regional extension center space and the health information exchange
space. Are they all going to survive and sustain? Probably not. Are many or
most of them? I certainly hope so. That is something as an industry, if you
will, and market, that we are going to have to grapple with over the next year
to two years.

DR. GREEN: Thank you very much. Let’s go to Katherine.

MS. MARCHESINI: Good morning, I’m Katherine Marchesini with the Office of
the Chief Privacy Officer within ONC. Thanks for giving me the opportunity to
provide an update today on some of ONC’s privacy and security activities that
you may be interested in since our update to the group in February. The areas
and activities I’ll highlight today are centered around the health IT policy
committee’s privacy and security tiger team and some of our office’s privacy
and security activities including some of our research efforts as well as our

Next Monday the Health IT Policy Committee, Privacy and Security Tire Team
will be hosting a public virtual hearing that will be focused on non-targeted
query. When we talk about a non-targeted query, this goes to a patient. Other
providers may not all be known in advance of when they’re seeing a provider. So
non-target query involves looking for a patient’s record using information
about the patient versus just querying for a patient’s record by asking one or
more specific provider organizations.

At the hearing, the tire team hopes to gain an understanding of the type of
policies that are deployed to ensure that non-targeted queries where patient
record is appropriate, legal, and authorized. The group also has to learn about
the thought processes behind the development of any such policies.

Some of the privacy and security research activities we have going on
include a privacy and security consumer attitude survey. ONC recently conducted
a random, digit down national survey of 2,000 adults exploring various themes
around privacy and security of electronic health records as well as health
information exchange. Key metrics that we’re looking at include how concerned
are individuals with privacy and security of their medical record, whether
individuals withheld information from a provider due to privacy and security
concerns, and another being do individuals want providers to use electronic
health records and exchange information electronically despite any privacy and
security concerns they may have.

We also worked in collaboration with the National Cancer Institute to field
core questions in an ongoing health information national trends survey. You’ve
probably familiar with HINT. Results from both of the surveys are being
analyzed, and we have more to share with you in the coming months.

As you know, health information requires special handling that goes beyond
the protections that are already provided through the HIPAA privacy rule, which
allows healthcare providers to disclose protected health information without
patient consent for treatment, payment, and healthcare operation purposes. You
may be familiar with the ONC data segmentation for privacy initiative. I know
Judy had it on a side list as part of the S&I framework efforts. This is
often referred to as DS4P.

Overall it furthers HHS efforts on behavioral health. Just to give a
snapshot, we’re delighted in total about the participation and interest we’ve
had in the project with over 300 participants in 5 announced pilots. The
community has developed a number of materials in support of the initiative
including several use cases and core funding implementation guides.

We’re looking forward to eventual live implementation of this technology,
and further development of standards that have been identified to appropriately
segment data and communicate privacy restrictions across different systems. On
the next slide you will be able to see a snapshot of the status of the DS4P
pilot. As mentioned there are side pilots, one federal pilot, which is a
coordination between VA and SAMHSA, and four pilots in the private sector. All
the pilots are at very stages of implementation, and ONC is serving in a
coordinating role. The overall next steps of many of the pilots are information
exchange and interoperability among the pilots.

In addition to some of our privacy and security research activities, we’re
also working on various privacy and security technical materials, including
those for healthcare providers in coordination with the HHS Office for Civil
Rights. We’re developing a security 101 awareness video series, if intended to
be an introduction to the overall fundamentals of information security topics.
It’s particularly aimed and small and medium sized providers, as they often do
not have resources to dedicate to come up to speed in this area. We anticipate
releasing two videos, one focusing on risk analysis 101 and the other,
contingency planning 101, on healthIT.gov in fall of 2013.

We’re working on other materials to assist providers around security,
including developing our second security training game. We released our first
interactive cyber-secure training game in September 2012. It focused on general
security in a healthcare practice. We hope to release a second game this fall
that focuses on contingency planning. Also in the coming months we plan to
release new materials and resources as part of our mobile device resource
center we launched with the Office for Civil Rights last year. We hope it will
include tutorials focused on configuring technical controls on various mobile

The last area I’ll touch on is our privacy and security guide. In 2012 we
released a guide to privacy and security of health information, and it’s
designed to help healthcare providers and practitioners and their staff to
better understand the important role that privacy and security play in the use
of electronic health records and the overall meaningful use program. We’re
working on updating a guide to reflect the recently released HITECH HIPAA Final
Rules and Meaningful Use Stage Two. That’s a brief update on some of our
activities since February, and I welcome any questions or comments that the
group may have.

DR. GREEN: Thank you very much, Katherine. Walter, do you have a question?
My goodness– Linda?

MS. KLOSS: This is Linda Kloss, and I was wondering whether the work that
you’re doing on data segmentation or privacy initiative, will be part of the
agenda for the EU cooperative work as it does appear that a good deal of
thought has been given to the challenges of segmentation in Canada and the EU.

MS. MARCHESINI: Yes, I imagine that will be part of the conversation.
Probably, about two years ago, before we initially launched the effort through
the S&I framework, we did outreach to various members of the international
community to check the pulse on where they are in this arena. What we did learn
was many of them weren’t necessarily fully operational, not so much– the
technology wasn’t available, so it will be great to share some of what we
learned and help to coordinate on that.

DR. CARR: I just want to know a little bit more about the privacy and
security consumer attitudes survey. I was a little unclear– it says you’re
going to survey through 2014, but the status is completed?

MS. MARCHESINI: Oh yes, I’m sorry that was a little unclear. We launched the
initial baseline survey and we continue– we plan to do the survey every two
years to measure progress or if there are changes from the baseline metrics
that we have gathered.

DR. CARR: When will the results be available, and how are they going to be

MS. MARCHESINI: Hopefully very soon. I know there are conversations about
potentially having data briefs. There will be some information available for
healthIT.gov. My understanding with our economic analysis and modeling team,
there may be some conversations around the manuscript.

DR. GREEN: Can we lean on you and ask you to be certain that our NCVHS
Working Group and our Privacy and Confidentiality and Security Committee are
provided with that as soon as it’s available?

MS. MARCHESINI: Absolutely. I will make a note now.

DR. GREEN: Thank you very much. Rachel, we are in your hands. I need to ask
your help, and Charlie welcome. Sorry I’m negligent in not welcoming you to the
table here, but we’ve got about 22 or 23 minutes left to attend to Rachel’s
report and also get to Charlie’s. Let’s proceed.

MS. SEEGER: I’ll be brief. I’m going to update you all today on a number of
new initiatives that OCR has undertaken to reach consumers and providers with
messages on health information privacy. The first really dovetails a campaign
that was undertaken by the Centers for Disease Control and Prevention roughly a
year ago. It’s called, Testing Makes Us Stronger. One of the things that we
heard from our colleagues at CDC is that this audience was really passionate
about the privacy and confidentiality of their testing results.

We look to do this public service announcement campaign with CDC, and we
were going to focus on privacy in general, but when we went out and started to
do some focus testing of this audience, young black men who have sex with men,
we really found their health literacy level was very low.

One of the things they were most interested in was access. We thought this
was a great opportunity for us to educate individuals about what’s the
cornerstone of patients’ rights under HIPAA, their right to access, and taking
control over your health information as a tool for becoming more engaged in
your care. We partnered with CDC, as I mentioned previously, AIDS.gov, as well
as the Office of the National Coordinator for Health Information Technology to
launch this campaign.

We launched on Memorial Day weekend here in DC as part of DC Black Pride.
There are great transit ads up all over the city, and we have a lot of digital
ad buys, nationally and locally. We’re moving on to Chicago on July 3-7, New
York City August 16-18, Atlanta August 29-September 1, and Oakland August
30-September 1, again at all of these Black Pride events. Then we’ll be
exhibiting beginning September 8 at the World AIDS Conference.

Our URL– rather than having people try to navigate OCR’s complex website,
our friends at AIDS.gov gave us a URL: aids.gov/privacy. There’s a snapshot
here of the website, really clear, concise, plain language, lots of information
available, including links to OCR’s new fact sheets, the ability for people to
download posters, brochures, FAQs, videos, all on a mobile platform. We also
direct people back to ONC’s blue button. We have some great new pocket
brochures. I’ve never seen anything like these before. They fit in your back
pocket and include information, rather than the good old tri-fold that we’re
all so used to. Again, clear, concise, easy to understand information.

Moving along, we also don’t forget our healthcare providers who are looking
for information on the new Omnibus rule. We’ve partnered with Medscape.org to
stand up a new resource center called, Protecting Patients’ Rights.

At this time, we have three video modules that are featured on this resource
page, as well as links to all kinds of our most popular materials, the new
model business associate language that we posted, really easy to find, again
mobile accessible. We also have an interesting question that we’re updating
quarterly. It’s a poll question. Right now we’re trying to gather some
information on who is responsible within these small healthcare provider
practices for privacy and security compliance. Our belief is that it’s probably
the office manager, maybe the billing manager, not the healthcare provider.
We’re really trying to get some data here.

Just a snapshot into these videos, they’ve been incredibly successful. We
have a written anthology on compliance with the HIPAA privacy rule. We have a
video spotlight featuring our director, Leon Rodriguez, and the Chief Privacy
Officer, Joy Pritts, on building a culture of compliance within your practice.
Then a new module that just posted, Patient Privacy: A Guide for Providers
featuring Leon and an OB/Gyn out of Calvert County, Maryland. We have been
getting not only great page views but great learners. I think we have really
hit about 40,000 healthcare providers since we launched in June of last year.
All of these are available for free CME and CE credit.

Now moving onto important new tools for consumers. If you haven’t been out
to our website lately, we have eight new videos for consumers. One of these is
focused on the security rule for small providers. We have a series of new
post-omnibus brochures that are geared towards consumers. All of these
brochures are available in eight different languages, traditional Chinese,
simplified Chinese, Korean, Polish, Russian, Spanish, Tagalog, and Vietnamese.

Moving along to your YouTube videos that I mentioned earlier, I just want to
point out that I bet at the end of this week we’ll have 500,000 views of these
videos. A couple of points that I want to bring to your attention, we have this
cornerstone video, “Your Health Information: Your Rights”, that we
created. We decided that instead of just providing some Spanish subtitles, we
decided to create this video independently in Spanish language. It has blown up
on YouTube. I really think that it sends a clear message to how many people are
looking for information in language, regardless of if they’re bilingual or not.
People would really prefer– Spanish-speakers would prefer to listen to health
information in language rather than read it in English. We have about 170,000
views of this video. I bet we’ll be up around 200,000 by the end of the month.
Likewise, we’re doing great on the HIPAA security video.

We have two more of these videos in production, post-Omnibus. One will be on
the new rights for consumers. The other will be a short video for business
associates and their subcontractors on their new liability and what they need
to be thinking about in order to comply with the rules. We also have two more
of those Medscape modules in production. One is going to focus on the
importance of a risk analysis and ongoing risk management. The other will focus
on mobile device security, so more to come on those.

DR. GREEN: Thank you very much. So here come the questions.

DR. COHEN: Great stuff, thank you so much, very exciting. I assume you’re
going to be producing all future videos and the ones that are in English and
Spanish as well given the uptake of the initial one?

MS. SEEGER: It depends on resources. Right now, I think our plan is to do a
little subtitling, especially on our access video, but we are all in a time of
doing more with less. I hope so. I hope that everything you see here is really
a pilot for us moving forward in disseminating information in new ways. ASPA,
the Assistant Secretary for Public Affairs, always tells us we have eight of
the top ten most trafficked web pages on HHS.gov. People are really hungry for
this information, so I hope we can get there, Bruce.

DR. CARR: Fantastic work and great presentation, fantastic presentation. I
have to be the historian in here. Historically, and this goes back maybe ten
years, nine years anyway, our report from OCR was how many complaints there
were and how many were validated and how many took action. The number was
double digits, maybe 10 or 15. Most of the things turn out to be someone didn’t
know the rule, and so they didn’t go to jail, but it was a lot of pharmacy that
said something when they shouldn’t have.

When I look at this today, I see unbelievable convergence, going from those
single complaints and then HITECH came in. Now, we have collaboration among
agencies, both inside and outside the government. We have engagement. We have
proactive activity, and we are even using big data by counting the number of
heads, to drive agenda. I just think it is an unbelievable transformation. I
applaud HHS for fostering this kind of work. You see once you set the table
what can come out of it. It’s really fantastic.

DR. MAYS: This is really exciting. I’m sitting here with tons of ideas. One,
I want to figure out if there’s anything that we as a committee, can say or do
to kind of support and encourage this. Just as Justine was saying, it’s almost
like the evolution of where we are with this and how we think this will make a
difference using this kind of medium, this kind of outreach would be absolutely
important for us to comment on.

The second thing, and this is more my HIV researcher hat, for the first part
where you were talking about the African American men, they Black Gay Pride
parades are actually much more gay men. Men that we have the greatest
difficulty with educating are the ones that are the black community events and
are more hidden. I would suggest if there’s anyway for you to outreach to
women’s groups to show these at some of these other events, the men will
actually benefit. The literacy level is really low, and that’s what’s driving a
lot of the costs, et cetera, for CDC.

MS. MILAM: Great presentation, Rachel. You mentioned providing some more
guidance on mobile devices. Will that include BYOD issues, bring your own

MS. SEEGER: That is a great suggestion. Right now, these modules are in
development, so we will definitely pick up on that and ensure that that’s taken
care of.

DR. GREEN: We’re going to do these last three, and then we’re going to move
to Charlie.

MS. KLOSS: Thank you very much, Rachel. We’ll help spread the word of the
availability of these great tools. I guess mine is the obligatory stage three
meaningful use question. It is about accounting for disclosures and how that is
progressing, and secondly, how we’re going to capture the progress being made
in preparation for compliance with the Omnibus. What kind of metrics or data
are being gathered in that regard?

MS. SEEGER: To your first question, we are still under development, and I
don’t have an update for you at this time, but hopefully soon. To your second
question, we just undertook a series of free webinars with the work group for
electronic data interchange. The first of these series happened on Friday.
There are 3,300 people who are registered. WEDI has stood these up in
perpetuity so people will be able to go out and engage in this training.

I am a former demographer, so I’m big on data. I really believe that the
analytics will show us how many people we’re reaching and how many more people
we need to reach.

We also have been talking with AHIMA about doing similar webinar series.
Time is running out, so we have also purchased some digital ad-buys on Google,
on Medscape, for consumers on WebMD. The ads for providers tell them that time
is running out. They have a September 23 compliance date. We’re also hoping
that vendors are listening as well. Google ad-buys drive them back to
information on our website. The consumer ads let people know that they have new
rights, and especially that new right to getting an electronic copy of their
information that’s held in their electronic medical record. We’re very, very
focused on September 23, and really, boots on the ground.

MS. KLOSS: Is there anything this committee can do help communicate that?

MS. SEEGER: I think our biggest concerns are the business associates, the
small billing services who are working out of their house, the small mom and
pops who are doing this as a side business. I don’t think they know they have
to do a risk analysis. I don’t think they even know where to begin with this
stuff. It is scalable and flexible, but they need to be on top of it right now.
I just can’t emphasize that enough. We are really trying to work with our
partners at ONC.

Unfortunately, we’re all kind of winding down on these grants, but really
time is of the essence in trying to get the word out, encouraging folks to

DR. TANG: I apologize for piling on and boring you, but this is really
fantastic work. It’s so refreshing, and it’s so right on. I think the outreach
in particular, so one, what’s the problem to solve, and where does the problem
lie, and go find them, go get to them rather than just post it somewhere. It’s

DR. CARR: And outreach to the providers with CME.

DR. TANG: And the other thing you just mentioned, the BA, it’s not just Mom
and Pop. It’s every size that does not understand, including the covered entity
who needs to– everyone needs this. To the extent that you can just blast it,
that does help you have all the associations.

We need to get this information out because it’s not going to be done,
whether they want to or not, if they don’t understand. That is the baseline.
That’s the default. Thank you for thinking of this media, because it’s so much
more effective this way, and then the languages? It’s just phenomenal work.

We also heard in our community-oriented approach, this is the way to get
information out effectively. It doesn’t have to be long, in fact, it shouldn’t
be long otherwise it won’t be viewed, but the kinds of techniques you’re using,
there’s just so much application across the board. Think about open government,
open data. This is the only way to make the data accessible. It doesn’t really
matter whether it’s on the web. It’s how to make it accessible, which we’ve
heard over and over from the community hearing.

Let me ask one question. Do you know approximately how much it costs for one
of these videos? What’s the order of magnitude– what’s the kinds of funding we
need to get to your agency, OESS? This is the method to get the information out

MS. SEEGER: They’re $38,000, and then if we film additional videos at the
same time, that’s another $8,000 per video. I think one of the thing’s OCR– we
have the smallest budget within HHS of all the OpDivs and StaffDivs. We do have
money coming in through our resolution agreements, and hopefully– we just had
an announcement this week with SHASDA for $275,000.

I think there’s more to come that are in the pipeline, and hopefully the
outreach and education side of the house will get some of this money, but we
also want to stand up a permanent audit program. We feel that the data that’s
coming out of that is really helping us inform our investigative work, which is
really our core work. I think website redesign is something we’re very
passionate about, because it’s just impossible to navigate our website even for
the most savvy of us. There are a lot of things on our wish list, but that
“Information is Powerful Medicine” campaign, we really see that as a
pilot. We targeted HIV, targeting cancer, targeting diabetes, targeting any
chronic disease condition, parents with young children, caregivers, anything.
We’re really trying to think about working with ONC as they launch more work on
the blue button about how we can work collaboratively on this Information Is
Powerful Medicine work.

DR. GREEN: Spectacular. Walter, wrap this up quickly for us.

DR. SUAREZ: Thank you, and terrific work, Rachel. I actually have seen the
video in Spanish, and it’s an amazing video. I never would have thought that
one could think of OCR and YouTube in the same sentence. I am stunned by the
incredible work.

Actually, I’ve seen a number of messages pushed on the Spanish network,
which by the way reaches over 25 million people in this country, and many of
the people that are in higher need being reached with this type of information.

The question I have or the comment I have is I couldn’t help but notice in
the slide that says, the MedScape slide, the heading is Protecting Patient
Rights. It creates an interesting point because OCR — the other thing we
always think of OCR with respect to health, is only about HIPAA privacy and
security, and only about health information, security, and privacy, and
information rights. Are we looking beyond information rights, other patient

MS. SEEGER: Walter, you’re so clever. Yes, rather than keep putting up new
destination pages, one of the things we would like to do is build on this
destination page. No one cares about the Office for Civil Rights. They care
about our core work. Part of our core work is LEP, limited-English proficiency.
This is the perfect place for us to educate providers on their responsibilities
under title 6. I am especially passionate about LEP as it relates to EHRs and
health information technology. I really think we’re trying to use this as a
building block for moving forward with this work. We’re doing a lot of work in
the area of LGBT non-discrimination, work around HIV. It allows us an
opportunity to talk to providers in our inner space, not specific to privacy.

DR. GREEN: Okay, Charlie Rothwell, I want to be the first person to thank
you not for all the many things you’ve done in your career, but to thank you
for being the Acting Director and working your magic so that Marjorie Greenberg
is still sitting here next to me. On behalf of the committee, we think you are
a wonderful and powerful and influential man. Thank you for joining us. Thank
you for allowing us to get a little light here.

MR. ROTHWELL: Thank you. This is going to be more of a bureaucratic
presentation, so not nearly as exciting as what you just listened to. I
completely agree with you. I think my greatest achievement in this short time,
is hearing that Marjorie was going to stay with us a little while longer. I
want to assure you that the Center is going to be supporting the National
Committee even when she leaves as best we can. We promise to make sure that you
get the support you need. This is very important to us, obviously extremely
important to the Secretary and the Department, just by the various
presentations that were made today.

Although I’m new to the job, I’m not new to health statistics. I’ve been at
it for 40-something years at the state and national level, but we do miss Ed
Sondik. He’s going to be hard to replace, yet I think it’s the end of this week
we are going to be closing for the director of NCHS. So if you haven’t applied
yet, this is not a done deal. We’re actively looking for outstanding people to
apply for the Center’s position as director. We’ve got great staff and great
activities. We’re hoping to have somebody of Ed’s ilk in the future.

When you take a look at our budget situation, we’ve been blessed when you
look at other federal agencies, frankly, in that we’ve been sort of
level-funded for the last five or six years, and that’s pretty darn good in
some areas, especially within CDC.

The other big thing about it was that our funding comes from a variety of
sources, but the major source, our core budget, is from evaluation funds, which
is a tap basically on public health service agencies throughout the Department
that funds us and some other activities in the Department.

That was held– since those agencies have already been hit by sequestration,
we weren’t, because they had already been hit and thus the money came to us
came to us. We weren’t hit by sequestration, which was a huge thing for us.
Also, we’ve been very much a beneficiary of ACA funding through the prevention
public health fund. We received about $22 million during this year.

With those funds I think you probably already know, what we’ve done is that
HIS is larger than it ever has been. We just came out with a release on health
insurance, which not just talked about where we are as a nation, but also
talked about 40-some states, and where they were. We could never have done that
a year or two ago. This funding has actually not only allowed us to increase
some of the questions that we’ve been able to put on HIS, but we’ve been able
to expand the sample size to about 108,000 individuals which then allows us to
go out and be able to say something not at the detail we would like at the
state level, but at least we can say something about many of our states. I’m
quite excited about that.

Also, what it’s done is– the poor sister in NCHS over many decades, has
been our surveys that have to do with activities of monitoring our healthcare
in the US. We had more surveys out of the field than we had surveys into the
field. That’s no longer the case. Not only is it no longer the case, but
they’ve expanded sample size so even those surveys can say something about
states, not 40 states, but perhaps 20 or so. We’ve been really blessed with
these funds.

Also, we’ve been able to fund states in the vital statistics area to be able
to finally get to the 2003 revision on births– which you say goodness
gracious, this is 2013. That was the largest change in vital statistics
probably in the last 40 years as far as data content goes. It was done before
electronic health records, and that’s why it was so large, and states didn’t
really have the ability to move to that. Now we use those funds to help states
that weren’t able to get there to get there. Now we’re funding states for
electronic death registration processes, and I’ll get to that later because
that’s going to be huge.

2014 budget request, well, take a look at that dollar figure. For us, it’s
huge. There’s a little bit going on there. One is that CDC is now going to a
working capital fund. NIH has it, too. Basically, when you buy business
services, we get business services from CDC. That means personnel, it means
budget, it means everything IT, you name it. They provide those services to us.
Now what they’re going to do is give us the money for those services and then
we’re going to buy them back. I don’t want to say it’s a shell game, but that
$20 million really isn’t a game. It’s helping us, but the $22 million is
something that we’re hoping that will come to us. You can see that we’re
wanting to phase in electronic death registration in the states and utilize the
census, 2010 census to redo our sampling for our surveys and look at new ways
of expanding our data collection and methods of expanding our data collection.

Now, are we going to get those funds? Who knows? We’ve had that money in for
three years, four years and haven’t gotten it because you saw that I said we
were flat-lined. Now, is that bad? Well, we would love to have the dollars, but
I think what’s really important is that the president has recognized that this
was important and put it in his budget.

I can’t tell you how important that is to an agency. It may sound not
important, but it really is because then it says for other agencies who may
have money, maybe this is a place we can help you out. You’ll see in our budget
that many agencies help us out considerably.

We’re also hoping in 2014 to get more funding from ACA and do some of the
same types of things we’re doing now, which also should tell you that if those
funds don’t come to us we would have a problem as far as the sample sizes that
we have in our surveys, and in some of our surveys whether we could keep them
going at the level they are. Right now, we’re very hopeful that funding will be
provided to us.

If you take a look at our budget, take a look at the yellow. Basically since
about 2010, we’re about the same level as we have been. That’s extremely
important. The green is funding from the ACA and the working capital I’ve put
in– you can see the orange over here and the white. I’m trying to give you an
idea as if they had put the working capital funds back in our budget years ago
what would our budget look like. That’s all I’m trying to do there.

What I really want you to look at is the reimbursables. You can see in 2012
we had $44 million in reimbursables coming to us. In 2013, it looks like about
at this point, $20 million, and it’s going up. That’s a huge part of our
budget. HIS is heavily funded from reimbursables. NHANES is funded even more.
The national survey for family growth wouldn’t even be alive if it wasn’t for
funding from our partners throughout the department.

So what are we doing? Some of the new things we’re doing is HIS is
collecting sexual orientation information for the first time. NHANES, while it
was going on doing the NHANES survey completed the National Youth Fitness
Survey in 2012. I think the results of that will be very, very interesting.
We’re continuing to oversample Asian Americans in the health interview survey
and NHANES. We really need to say more about that group.

We’re also looking through NHANES to how we might be able to add measurement
information to HIS. Just think of the sample size that HIS has compared to
NHANES. NHANES is miniscule from a sample size perspective. If we could just
get height, weight, dried blood spots, and blood pressure doing interviews in
HIS, what we might be able to say for the nation and for states at this level.
Whether we’ll be able to do it or not, that’s still an open question. It’s also
an open question with the census who does our data collection for us. We’re
hoping to do pilot studies using electronic health records and a lot in the
small area estimation.

You can again– I’m repeating myself on this, so I’ll skip this, but this is
what we’re doing to really measure ACA, including issues of health insurance,
monitoring health insurance, and access to health care. From a vital statistics
perspective, it’s been speed up. You may not know it, but vital statistics was
a historical system. It wasn’t a data collection system to tell us where we
were. It was a system that told us where we were five years ago. We’re no
longer there now. We’ve changed our internal systems.

States are changing their systems, and we are actually talking about– and
you’re not going to believe it– we’re really talking about doing mortality
surveillance in this country using the vital statistics system. Instead of
publishing data that was two years old, two and a half years old, we’re looking
at getting information to us within days and then being able to report back on
certain types of deaths, which are of public health importance. This really
could be huge. It has a lot to do with the states automating at the source.

Tied to that will be in the future how do we bring vital registration and
electronic health records together. How do we emerge that all the information
is being collected separately through the automated birth registration systems
in every hospital to pull that information from electronic health records in
those hospitals. How do we do that and do it well? And by the way, if I’m a
certifying physician seeing Charlie Rothwell who happened to die outside and I
now have to survey his cause of death, it would be really nice for me to be
able to see when I’m completing certifying his cause of death, I could see his
electronic health record so that I could see what might in fact have brought
him to this unfortunate end.

I think there’s a huge chance for improvement here for not only a timeliness
perspective, but from a data quality perspective. I’m not going to talk about
this. You know more about it than I do, but Marjorie’s group has just done a
terrific job leading not just CDC but providing training and pushing for the
department itself, and we’re ready to go. Thank you.

DR. GREEN: Thank you, Charlie. I see we’ve got a couple of questions. Let’s
do that. Paul, I think you’re up first.

DR. TANG: Thanks, Charlie, wonderful report and wonderful passion on the
report. I want to pick up on the whole connection with EHRs. You talk about the
extra money and how you’re developing new questions and feeling more surveys.
Is there time to spend some of that money on investing in the electronic
connectivity that you just described? In other words, how can we get more
questions on an ongoing basis just because they touch the healthcare system on
an ongoing basis through our PHRs and our EHRs?

Is there any worth looking at– you said there were pilots on EHRs, but what
other ways can we start surveying or conducting surveillance on patient health
issues to inform vital statistics in an ongoing way from a patient’s point of
view, not just whether they died or not or were born, but what’s the health
status, what’s the functional status of folks on an ongoing basis? Then you
also mentioned this whole can’t we feed the vital statistics with birth and
death rates, and actually better death rates in a sense, cause of death, by
this connectivity. We haven’t really talked about that in meaningful use. That
would be pretty exciting. How could we get some suggestions from you? As you
know, we’re in the process of– the HIV policy committee is working on our
stage three recommendations, and that’s due in September. It’s a very short
order if we can talk to you about what’s the most important thing– we have
immunization rate, and those are all good, but there may be some really
untapped, low-hanging fruit– I’m seeing Rob also agreeing– that we might want
to raise, because we haven’t raised them.

MR. ROTHWELL: Well, where to start? Maybe with the last first. I’m in the
tank on vital statistics. I’ve worked in health statistics in general for 40
years, but I’ve always worked in vital statistics in some way. It really is the
bookend. It’s where I came in and it’s where I’m leaving, but it should be the
key to everything else. Right now, it’s the end– it’s the beginning and the
end completely apart from everything that’s going on in the middle. That’s
where we really need to make that change. From a birth registration
perspective, we have HL7 standards for vital registration for both births and
deaths. We feel good about that.

I think the real issue will be whether the standards are sufficient enough
in electronic health records so that states aren’t just pummeled by a variety
of standards, electronic health record systems that provide something like what
they need but not exactly what they need. That’s going to be– we’ve had
standards on the vitals end for decades, not that it’s always followed, but I
think that’s going to be one of the main problems. We are funding some states
right now, Minnesota for example, to look at how they would meld their
electronic health records with and populate the birth system.

We’re funding Utah for death registration. The death registration is a
little different because you’re not looking at getting what Charlie presented
himself the last time he saw his physician when he breathed his last. What
you’re looking at is a series of conditions that brought about death. The
electronic health record can help that. As a physician, I can see myself
filling out whatever I have to do on this electronic death registration system
while I see Charlie Rothwell’s health record. Here’s where the real important
thing is: what if Charlie Rothwell died of something that literally was of some
immediate public health import? Why can’t we then under regulation attach that
electronic health record to that death record and provide that in real time to
that state health department or the state epidemiologist to look into this a
little further. I think there are some significant possibilities here.

DR. TANG: That’s the ultimate claim attachment. All of us who’ve signed
death certificates know how not helpful they are. Justine was nodding her head
when you said they’re all cardiac arrest. We don’t actually know what we don’t
know. That’s really hurting us. Finally, we have a chance, because half of the
place is wired now, we have a chance to get better information about what’s

MR. ROTHWELL: New York City has done some great work there. It unfortunately
was done because there were some significant problems, but I think out of that
will come a lot of improvements in data quality. As a matter of fact, they
require their physicians now to take a course on how to complete a death
certificate, but more importantly what we’re looking for. Whether you like it
or not, I think it’s at least an attempt to try to tell the physician who may
not really know how is this information ever going to be used that, my God, NCI
is being held accountable for this. Heart and Lung is being held accountable
for this. We’re publishing data that everybody is accountable for, and yet the
person who’s completing it doesn’t really realize that. That’s our fault.

DR. GREEN: We’re going to return to this in the afternoon. It probably won’t
be at 2:00 because we’re running late, as we typically do. We will be coming
back to this. Can we do these two questions quickly?

DR. CARR: I was just going to add on to what was already said about
mortality, because at least in the hospitals we’re managing through that and
we’re doing risk adjustment, and I think the risk adjustment would be a key
case of that and enhancing those methodologies.

DR. COHEN: I have to supplement Charlie’s comments from the stat
perspective. The Vital Statistics‘ system is a cooperative one. The data
reside in the state. A couple of weeks ago we had our NAPHSIS meeting, and
there were several issues and themes that emerged. You’ve seen one state,
you’ve seen one state. All the systems for data collection are different.
That’s really important to understand how the information is transmitted.

I don’t want to steal Michelle’s thunder for this afternoon, but there was a
connect-a-thon that we held that demonstrated the connection between EHRs and
the birth certificates and the EHRs and the death certificates. I think it
would be great if we could restage that demonstration for this committee so you
have a real understanding of exactly where the state of the art is in trying to
connect EHRs to vital statistics systems. Also NAPHSIS picked up on New York
City’s cause of death interactive online training, and with some assistance
from NCHS we’ve developed these modules that go across jurisdictions and now
are available hopefully for all physicians in all states to enhance their

I could talk for a long time. I know I’m between us and getting ready for
moving on, but one other comment for Charlie. As the committee moves more into
focusing on how we can support as community driven change, I would like us to
partner more with NCHS to support community driven change with respect to data.
I know many long years ago when I was at NCHS we had a series called
“Statistical Notes for Health Planners” that was incredibly popular
and incredibly useful. NCHS is the mecca of translating state of the art
statistics and approaches into useful data. I would love for us to get more
back to that theme and have the national committee support any NCHS activities
to really think more proactively about how to use the data for community

MR. ROTHWELL: Very thoughtful, we’re a long ways away from that. We’ve
walked away from that. Let me think about that. That’s an excellent idea. I
will mention that to the new director as well. Getting back to what Bruce was
saying, yes, you’ve seen one state, you’ve seen one state. It’s not that bad.
If Congress– I’m sorry, but if Congress could follow what the vital
registration system does in the United States where we have such differences
and yet we’re able to come back and come up with a national data set that we
get year after year after year, I think it’s really incredible.

Where we are right now is from a technology perspective we can really
improve the data quality and timeliness of that cooperation that we have.
Basically, we’ve got cooperative partners who want to get better and now we
have the technology to do it. I’m really excited. I wish I was a younger
person, but I’m not, because I’d love to see the next decade or two.

DR. GREEN: What a lovely morning. I think Walter offered us the summary with
one very short statement: he said the train is moving. He said it about two
hours ago. It obviously is. What a lovely morning. We’re going to– I’ve
committed the crime again, we didn’t get a break until 11:30. We’re going to
take a break, come back in 15 minutes, and I’ll huddle with Walter and Ob, and
we’ll get this organized, but we’re going to do this letter before we go to

(Brief recess)

Agenda Item: Standards Letter report

DR. GREEN: We’ll reconvene. We’re at the 11:15 agenda item here. This is our
standards letter about claims attachment. It’s been through the process we put
our letters through. It’s had a wonderful level of participation. Walter and Ob
are going to take us through this, emphasizing the purpose of the letter first
and then briefly summarizing the main findings. Then we’re going to actually
read through each of the recommendations with you here right now and then take

DR. SUAREZ: Thank you. As you all know this has been a long process to come
to this letter. This is a formal letter of recommendations on attachment
standards. As you all know the Affordable Care Act calls for the publication of
final rules on attachment standards by January 1st of next year,
with a compliance date of January 1st of 2016. NCVHS held two
hearings over the last couple of years, and the last one was in February of
this year where we heard testimony on the status of standards and from that we
developed this letter with a series of observations and recommendations.

You all received the letter in your packet, so we’re not going to go through
the introductory paragraph. We identified three major themes: the theme of
convergence, the need for a roadmap, and the theme about continuous
collaboration in the industry between SDOs, operating rule authoring entities,
and others, so those are important themes that we heard. We also identified a
number of observations. Again we’re not going to go over those. You have them
in your letter, but we wanted to really concentrate on the recommendations. We
made 18 specific recommendations related to attachments. We’re going to go over

In the introductory paragraph I think it’s important to note in the
recommendations, we tried to organize the presentation of recommendations in a
layered way. We describe the concept of the different aspects of the
attachments that need to be standardized, the message content, the coding
mechanism to identify consistently the type of attachments, the envelope
concept, the wrapping system, the method for which the data will be exchanged,
the transport mechanism, and then the business rule layer, so the operating
rules. We tried to organize recommendations around all of those.

I’m going to go into the recommendations. Recommendation number one, we
highlighted, and this is important to me, the first recommendation they need to
conduct an overarching review of the adoption of standards for clinical and
administrative processes in light of the various programs currently underway,
including Meaningful Use, HIPAA, and the Affordable Care Act, the
Administrative Simplification Provisions, Health Reform, Medicare/Medicaid
Program Integrity, changes, and others, and develop a road- map, again this is
the theme of the roadmap that has come through several times, that will phase
in at appropriate times and in the most effective sequences various standards
for related health information exchanges.

We believe that to fulfill the information needs of the future efficiently
administrative transactions such as claims legibility, prior authorization, and
attachments, to name a few, will need to be evaluated. We feel this is the
right time for government, industry, and standard development organizations to
begin looking at this long-term review and modification effort.

This is the recommendation to begin to look more holistically at the concept
of standards as it applies to these processes and consider the changes that
need to be done.

DR. GREEN: Walter, do you want to take questions about recommendation one,
or do you want to do them all?

DR. SUAREZ: I think it’s good to stop on each recommendation and see if
there are any comments.

DR. GREEN: Any comments about this recommendation? Number two.

(No questions)

DR. SUAREZ: All right, recommendation number two. This is regarding the
attachment standards. So we’re recommending to take an incremental flexible
approach to that adoption of the attachment standards, implementation,
specifications, and operating rules, and transition period for industry
adoption within the roadmap noted above. This should include identifying the
key building blocks, the base standards, core attachment components and
priority purposes for which attachments are needed. The overall costs and
efforts expected for the industry to adopt all elements of attachment at once
can be significant and come at a time when many other requirements are covered
entities and stakeholders will converge.

The Department should also consider working with industry to identify and
define a series of milestones to be achieved during the transition period
towards the compliance date that can be included in the regulations.

What we’re saying here again is we want to see these as a progressive
sequencing process for adopting the standards for the various types of
attachments that exist in the industry. Any comments on that?

DR. CARR: Walter, as you go through these, it might be helpful to say if
there was any discussion or disagreement or convergence needed on these things,
so that we can have a feeling of if there’s another way of looking at it or did
anybody disagree.

DR. SUAREZ: Overall, I must say this was one of the most converging. This
was one of the most consistent, harmonized feedback that we’ve received. We
received concerns around a couple of points, which I’ll mention a little
farther down.

So recommendation number three, this is about the definition of attachments.
As with all the other transactions, when a rule is to be adopted to name a
transaction to HIPAA there needs to be a definition of that transaction.

We’re recommending the definition of attachment to be supplemental
documentation needed to support a specific healthcare related event, and in
parentheses we put, such as claim, eligibility, prior authorization, referral,
and others, using a standardized format. This is the most generic definition.
It was actually provided in the testimony consistently by their stakeholders.
It’s a generic definition, and this is the one we recommend.

I’ll just keep going until someone jumps in. Recommendation four, so what
are the areas for which attachment-related standards should apply? The areas to
which attachment related transaction standards should be applied include
claims, eligibility, prior authorization, referrals, care management, post
payment audits, and any other administrative processes for which supplemental
medical information is needed.

This is truly making a common standard or set of standards, apply to many
different business processes that require additional supplemental medical
information to be exchanged.

Recommendation number five: Attachment standards should be defined for three
types of transactions. The query transaction; the electronic solicitation of an
attachment, the response, the electronic submission of an attachment; and
acknowledgement, the electronic confirmation of the query or the response of an
attachment. That’s the recommendation that we’re making, that a standard be
adopted in those three areas.

Recommendation number six. This is probably the most important one because
this is the one that names the actual standard. The following standard should
be adopted for attachment related transactions. First, message content and
format should be the HL7 Implementation Guide for CDA release 2, IHE Health
Story Consolidation, DSTU Release 1.1, and then the HL7 Attachment
Specification: Supplement to Consolidated CDA Templated Guide.

Very quickly a couple points about this, the first one, the HL7
Implementation Guide for CDA, it is the same standard being adopted or that has
been adopted, from Meaningful Use stage two. It’s consistent with that. The
second element in the HL7 is the implementation guide, if you will, the
supplemental specification developed by the HL7 attachment workgroup to clarify
the way in which the general standard, named first a general CDA standard, is
used to create an attachment. That’s why the two are recommended to be named as

Then for attachment type value set, we’re recommending to adopt a LOINC code
developed by the Regenstrief Institute. Now the purpose of this code very
quickly, is that when I’m going to send an attachment there is a coding system
in the LOINC code structure that allows the entities to identify the type of
attachment that I am either soliciting or sending back. That’s the purpose of
using a coding mechanism. It’s a way of naming—I’m sending an attachment
for this purpose, and it is coded already in the LOINC system.

The third standard is routing and enveloping. We’re recommending the X12 275
additional information to support both the health care claims and the health
care services review.

The request for attachments, this is to request the inquiry were recommended
to be updated to X12 277 health care claim request for additional information
for all the claim related attachment requests. And then the X12 278 health care
service review request for those non-claim related attachment requests. There
are two separate request transactions, one for claims and one for non-claims.
Lastly, the acknowledgement, we’re recommending the X12 TA1 and 999 standard.

In all of them we make a note about the versions, recommending version
60-20. I’ll make later on, some comments about some changes we’re going to
suggest in the letter, but we wanted to go through the clean letter first, as
you read it and reviewed it.

Those are the standards at this point we’ve recommended on recommendation
six. There was very consistent agreement on the standards, on the state of the
standards, on the alignment of the standards with meaningful use, and all these
other initiatives.

DR. STEAD: I like where this is going. The one question I have of whether we
should consider including or whether there was any discussion to whether we
should include it, during the work we did in trying to explain the PCAST 2010
Report to the Office of the National Coordinator, et cetera, one of the really
important ideas was that there should in fact be a name and version service,
that in essence would let you look up any standard and obtain in a computable
form the version at whatever time the information was captured in that

You can think of it as something for standards being the analog of the
domain name server, a way that we can easily get the thing that would allow us
in a computable way to unpack whatever information was in, if you will, the
packet. What that in essence does is it makes tight coupling of versions.

You’re actually able to evolve in a little bit more decoupled way because
everybody is defining whatever they’re doing now within a version. The meaning
of that version is in fact archived and available forever. It’s a way of making
the system a little less brittle, a little less tightly coupled, and probably
able to be interpreted for a much longer period of time. That wouldn’t require
change of anything you had in that recommendation. It actually would be another
recommendation or bullet within that recommendation because what it would
handle was the evolution of these recommendations.

DR. SUAREZ: Great point, in fact, we had discussed this, and as you will see
once we get into the small revisions that we made based on input from the
industry and others since this letter was sent, we are going to be recommending
deleting the reference to the versions, number one, and number two, we’re going
to make a notation like the one that is down here about the version that the
Secretary should consider adopting at the point of adoption the version that is

Now to your question, there is some challenge from a regulatory perspective.
The regulators cannot generally name a standard and say the standard is the X12
275, without specifying the actual version the industry must by regulation, use
and adopt. That’s a challenge. That’s why in the letter we ultimately prefer to
stay away from the versions, and make a notation that the Secretary should
identify the most appropriate version at the time the regulation is being

DR. STEAD: May I just comment? I understand, and that makes sense to me. I
would advocate that we consider also recommending that we have the naming
service and an ability to — because what the regulators have to do is that
for those things we’re electing to regulate, they’re having to specify what it
has to be in this time period. I understand that. That’s life at a point in

For those of us at this table that are interested in the longevity and
utility of data, I think it would be very important to establish the naming
service and the archival function that makes back versions computable. I think
that fits with your idea of a roadmap, so I —

DR. SUAREZ: I was going to say that applies to all the types of attachment
standards and not just attachments.

MR. SOONTHORNSIMA: Let me just clarify. Are you suggesting that we either
recommend or note in our letter that this naming service capability ought to be
explored, ought to be leveraged? Does this exist today or are we encouraging
the Department to look into this further?

MS. GOSS: And to that point, is it really tied to more of the overarching
control of the HIPAA transactions and a larger issue than just attachments?

DR. STEAD: It is a larger issue than attachments, but I believe your first
recommendation is a larger issue than attachments also. It is the idea that
we’ve got to have a harmonized roadmap. If this isn’t the right place to insert
this idea, we don’t need to do it. We can come at it in some other form.

It was one of the central ideas in the PCAST Report, and it is a major way
that I think we could increase speed while increasing flexibility, appropriate
flexibility. I think it’s a major potential impact of standards, and it doesn’t
need to be put here, but the reason I thought of it here is if you looked at
the breadth of things that you’re including in the standards as attachments,
when I looked at that, that is going to be a long and varied list. You’re
trying to come up with a relatively flexible architecture in dealing with that.
I love the letter. I’m very supportive of where you’re headed. I think this
would be a great add to it if it’s not inappropriate.

DR. SUAREZ: Let me suggest one quick thing. On recommendation number one, I
think we can insert a statement that says, we said including this, including
that with respect to this roadmap. So my suggestion would be to insert a
statement about the Department to consider developing a concept of the domain
name system, a mechanism to allow for electronic tracking of versioning across
various times.

DR. GREEN: Walter, let’s send this to the committee. You’ll have a chance to
meet before we vote on this, with the suggestion from the full committee that
there be an additional recommendation concerning this and let you guys pick out
and decide where you think you can insert it and bring it back in the morning.

DR. SUAREZ: We will do that. Thank you for that comment.

DR. WALKER: This is Jim Walker. I just wanted to express strong support. I
think that does provide the potential to move the field forward, but enable
organizations that aren’t able to be early adopters to continue to be part of
the grid.

DR. SUAREZ: So recommendation seven, this is about the standards being
adopted to support the submission of both structured and unstructured data
according to the specifications contained in the standards that we’re
referencing. In other words, the attachments at this point, not all the data is
in an attachment—it’s structured data, coded data. Some of the data is
unstructured. It’s a copy of a document, a pdf version. We want to continue
supporting that at this point in the standards. We are making sure to note that
this is recommended. I’ll keep going.

MS. GREENBERG: Is there a second part of that?

DR. SUAREZ: I’m sorry, the second statement is every effort should be made
to maximize the use of structured data, recognizing the efficiencies gained in
subsequent processing. So as much as possible use structured data, but allow

Recommendation eight is about supporting both solicited and unsolicited
attachment situations as we recommended back in 2004 when we first wrote to the
Secretary in support of electronic attachment.

The specific situations for which unsolicited attachments are expected by
payers should be clearly identified in trading partner agreements. Supporting a
trading partner agreement, pre-defined unsolicited attachments avoid
uncertainties and ambiguities in expectations from patients, providers, and
allow the provider to have greater control over his or her workload. Requests
and submissions of attachments for unspecified purposes should not be

DR. CARR: Could you give an example of what kind of specificity —

DR. SUAREZ: Unsolicited? We’re talking about solicited and unsolicited.

DR. CARR: Yeah, so in the first part where you say—so what would be
examples of solicited and unsolicited?

DR. SUAREZ: There are two ways of conducting attachment. Two business
relation situations. One is a payer receives a claim and finds that the claim
needs additional supporting medical documentation, so they send a request for
an attachment. That is solicited attachment.

In some instances the payer establishes a rule that says, for every
ambulance claim, we’re going to pre-define that in addition to the claim we’re
going to solicit an attachment that contains the run, the description of the
ambulance run. That is unsolicited.

The way I call it is a pre-solicited, because basically payers had already
defined that every time you send me a claim for an ambulance, please include
this attachment. The unsolicited situation is that the payer didn’t have to
receive the ambulance claim, send in a request, and then receive the
attachment. The provider knew beforehand to send in an unsolicited way, the
claim and the attachment. That’s an example of an unsolicited attachment. We’re
recommending that the system support both because in reality in many cases
there are pre-defined situations like that.

DR. CARR: The efficiency though is that the trading partner agreements, each
one would say what’s unsolicited.

DR. SUAREZ: Exactly, that’s the expectation that the payers will define in
the trade-partner agreements the situations in which unsolicited attachments
will be needed.

DR. CARR: But are you saying they’ll be different for each payer or that
there will be a standard set of unsolicited?

DR. SUAREZ: We’re not saying that they’ll be different. In fact, my
expectation is that through operating rules in attachments there will be a
common set of defined instances where unsolicited attachments occur. We’re not
forcing at this point the establishment of a standardized set of unsolicited

MR. SOONTHORNSIMA: There is no resolved scope to define what those business
conditions are.

DR. CARR: But just whether we’re saying that for the purposes of
administrative simplification, these things will always require and
unsolicited, that’s what I’m trying to get at. I know we’re not going to say–

DR. SUAREZ: We’re not there with this recommendation.

DR. CARR: That’s the goal, that we would eventually get to that.

DR. SUAREZ: I think in an operating rule that is the kind of thing that
would be able to be said.

All right, recommendation nine, the regulation should strongly emphasize the
applicability of minimum necessary privacy requirements. The regulations should
also emphasize that covert entities are not permitted to disclose protected
health information without having a value-permitted purpose for such
disclosure. We recommend the Office for Civil Rights be engaged in defining
guidance for covert entities regarding the applicability of privacy and
security requirements to the request and submission of attachments while
acknowledging the changing face of healthcare technology and the power of
attachments to improve healthcare delivery, quality of care, and

What we’re saying here is we’re not driving new privacy regulations that
affect attachment. We’re recommending the rules emphasize the applicability of
minimum necessary requirements under current HIPAA privacy when it deals with
the submission of attachments. In other words, the idea is not for providers to
send everything because they think that by sending everything, they will be
able to select only the things that they need. That’s an inappropriate
disclosure of information, or the provider or payer requesting everything
without some specific purpose.

MS. KLOSS: I was just going to say that the latter was the concern that was
brought out in the testimony, using this as a way to capture the whole
electronic record when it’s not appropriate or necessary.

DR. WALKER: It’s a complementary concern in the other direction, however,
when under the guise of administrative ease on the provider side shipping over
everything and allowing the payer to rake through it and get what they need,
and place this information in the hands of the payer that wasn’t requested and
suddenly becomes part of our obligation to protect because we’re in custody.

DR. SUAREZ: That is the first case I said. There are two situations that
we’re trying to look into. One is the provider sending everything without it
being asked for, which is a concern because you’re disclosing more information
than is needed, in the interest of saying well, the payer will select whatever
they need and they won’t come back to us with more requests. The other element
of concern is the payer requesting everything; just send me everything without

MS. KLOSS: One of the incidental issues we ran into in addressing this is
that the department was to issue guidance on minimum necessary. That guidance
hasn’t come yet. I think that is another issue that we need to follow up on as
a committee because this will prompt discussion about what are the limits, what
does that mean, how do you implement that?

DR. SUAREZ: It is important to clarify we’re not requesting or asking for
more rules on privacy, we’re just recommending to ensure that people understand
the implication, the applicability of meaningful use necessary to attachment.
All right, recommendation number ten, data other than identifying information
that are already supposed to be included in the regional transaction for which
an attachment is being requested might not be permitted to be requested again
in an attachment. The regulations should clearly remind covert entities to
follow the implementation specification or operating rules of the transactions
and to avoid duplicating exchange of information beyond what is necessary to
appropriately re-associate or link the transactions. This recommendation is
trying to say if I already sent in a claim, all this information, don’t come
back and ask me for this same information plus this other. Ask for it, and I
will send only the additional information plus whatever identification is

DR. WALKER: Sorry, this is back on nine. Maybe part of the reason the
Department hasn’t defined minimum necessary is because it isn’t definable. Just
as a suggestion, I think it might be worth the committee considering whether we
might recommend a JC-type regulation, where we just say that for at least all
standard interactions the payer and the provider, the two participants in the
exchange of information if agreed what minimally necessary is in an explicit
statement. I think if you did that you’d get maybe 80 or 90 percent. I can’t
imagine how you could define minimally necessary in a way that would be

DR. GREEN: So I think the two of you put this on the agenda, right? Any
comments about number ten?

(No comments)

SUAREZ: Okay, number 11, we are recommending what we refer to as chained
attachment request, this is the continuous follow-up request of attachments
after the first attachment has been requested and fulfilled, should not be
permitted. We’ll bring a couple of modifications to this in a minute.
Recommendation 12, the regulation should not define specific standards or
methods of transport as the only ways for exchanging attachments.

Standards being adopted should be agnostic of the transport mechanism
selected by trading partners to exchange attachment so as not to preclude or
inhibit innovation and different ways of communicating. However, the
recommendation should remind covert entities of the importance of following
reasonable administrative, physical, and technical security policies on
procedures when using and disclosing attachment information. We’re saying we’re
not recommending a specific transport mechanism, only do this web exchange or
this FTP type exchange or any of that.

Number 13, HHS should support the industry’s development of operating rules
for attachment transactions that address the infrastructure and technical leads
across industry sectors such that the use of companion guides is minimized or
restricted to other service information and other limited plan-specific
guidance. With respect to operating rules, we are not recommending in this
letter, and we’ll mention that at the end of the letter, we’re not recommending
any operating rules in this letter because there are no operating rules in
place or developed for attachments. What we are doing is basically saying the
HHS should support the industry in operating rules development and to try to
minimize the companion guide’s need.

Recommendation 14, depending on the time of the attachment rule, the Office
of the National Coordinator and CMS should make every effort to align the rules
such that the adoption of electronic attachments could support the next stage
of EHR certification criteria in stage three of meaningful use. This will be a
present for the convergence of clinical and administrative information,
systems, and operations.

Recommendation 15, work with industry to implement a testing program for
attachments during the transition period prior to the compliance date.
Recommendation 16, collaborate on education and outreach with all sectors of
industry. The opportunity for using electronic attachments in the clinical and
administrative setting to reduce costs and improve care is dramatic. We’re
clearly emphasizing the importance of education and outreach in this

Recommendation 17, while we heard is a strong, consistent message regarding
these recommendations noted above, we recommend that the department consider
publishing an expedited notice of proposed rule making rather than a final rule
on attachments, considering one, the length of time and change in technology
that have occurred since the original NPRM was published in 2005, and two, the
scope of attachments were recommended to be covered.

Then recommendation 18, the regulations should take into account the
difference in how attachments apply to the pharmacy industry, in particular the
concept of claim attachments that does not apply to pharmacy. However, the use
of attachments in prior authorization is an important one in pharmacy and a key
part of an e-prescribing function in workflow. The last paragraph is at this
point we’re not in a position to make any recommendation regarding the adoption
of operating rules for claim attachments, as they have not been developed yet
by the industry. We expect to evaluate this in early 2004. We’ll communicate
with the department as to whether there are standard operating rules to be
recommended for adoption at that time. That’s our letter.

MR. SOONTHORNSIMA: So the only follow-up item is from Bill in terms of the
naming service, so we’ll take a look at that.

DR. GREEN: You ready to talk about some proposed revisions?

DR. SUAREZ: Very quickly, one important thing that we did this time, and I
think it’s a very valuable part of what we do is we were able to publish our
proposed recommendation draft a weekend ahead. Last week we published it. The
industry was able to actually review that, and given the complexity of this
letter, we wanted to make sure that things were appropriately trim and we were
consistently creating some issues with the recommendations. We did receive a
number of very valuable feedback. Based on that we drafted yesterday a series
of minor, what we consider minor– none of these changes that you will see
change the direction or the overall principles of all these 18 recommendations,
but they help really clarify several things.

Let me go through those very quickly. The first one is in the second
recommendation, I’ll just read it here, it’s an insertion of text that says
“take an incremental, flexible approach”, and so they said “this
includes naming an initial attachment transaction type to comply with by
January 1, 2016, for example claims, and appropriately sequencing the naming of
the other attachment transactions”. Progressively– we said attachments
should apply to all these possible exchanges in the business exchange of health
here, including prior authorization, including eligibility, all sorts of other
things. What we’re saying here that is important to note is that the rules
should not just say attachments by January 1, 2016 applied to all these
transactions. We’re recommending to sequence the introduction of which
transaction it applies to, and it’s consistent again with the roadmap we
referenced above.

That’s the first change, and again I’m going to go through the changes, and
if people have questions, just stop me. The second change is moving this.
There’s no change in the text. Based on discussion we thought it would be
helpful to move recommendation 14, which is the one that recommends aligning
the standards with meaningful use and with administrative transactions, moving
it to recommendation 3, just to line it up with the other one.

The other changes in recommendation 3 where we say the definition of
attachments we recommended should be supplemental documentation needed. Without
any reference it looked like the supplemental documentation needed to support
anything. It needed to be put into the context of “needed about a
patient” to support a specific health related event. That’s a small
addition to clarify; it’s really supplemental documentation about a patient.

Recommendation 6, as I mentioned we are recommending deleting the references
to versioning. We also added here a split, because there are two separate
transactions, the X12– in the routing and envelope the X12-275, additional
information to support healthcare claims, and then the X12-275 additional
information to support healthcare services, service review. We split it just to
put it not into one sentence because it’s two separate standards. As you see,
we took out all this version. The other one was an important addition. All
these transaction standards that we referenced did not include the standard for
pharmacy prior authorization. We heard earlier this morning from CMS an update
about how exciting it is to see the EPA– you heard about the NCPDP EPA,
electronic prior authorization. Well, this is the standard that is being
established to conduct electronic prior authorization, which constitutes an
attachment type of transaction. We’re recommending adding the recommendation to
adopt for pharmacy prior authorization attachments and NCPDP script as the

We’re going down– the other change of the minor addition here in
recommendation 10 where it says the regulations should clearly remind
co-entities to follow the implementation specifications and/or operating rules
of the transactions. Before we only had four operating rules, but both go
together. Recommendation 11, an important one, in some instances there is a
situation where a provider sends an attachment and there is a valid business
reason why the attachment created another question for additional missing
documentation that is needed. It is certainly limited circumstances.

The original recommendation was completely shutting off any option or
possibility that a payer might request additional information following a first
attachment submission. We are inserting except in limited circumstances when
information in one attachment creates a legitimate business need for requesting
additional supported documentation.

Okay, this is moving recommendation 14 up, and then the last change was
really minor clean up on recommendation 18. It was too wordy, so the idea would
be basically the recommendation should take into account the specialized needs
of the pharmacy industry where attachments are used for prior authorization but
not for claims attachments, period. That ties back to the recommendation of
prior authorization standards. That’s all we have.

DR. GREEN: Questions or comments about the red line version?

MS. WEIKER: Margaret Weiker, representing ASC X12, Walter, would you go back
up to where you list the transactions please? Right there, go down a little bit
more so you can pick up your pharmacy. If we’re talking prior authorization, a
pharmacy with a pharmacist can request a prior authorization. There are some
Medicaids for very specific drugs that allow that. The NCPDP telecommunications
standard, version D.0, the one the HIPAA named, has that capability in that
transaction. I think you would have to list that if you’re listing the pharmacy
prior authorization. In addition, a pharmacy or a drug prior authorization can
also be sent using the X12- 278 transaction. At this point in time, I would
like to have that added as well, that it’s not just NCPDP script that can do a
drug or a biologic prior authorization.

DR. SUAREZ: So prior authorization can be conducted through more than just
the script’s standards.

MS. GOSS: Could I propose that Margaret give us the specific language she’d
like to see in that from her X12 hat as well as her NCPDP hat?

DR. SUAREZ: Then we’ll add that tomorrow during our standards committee

MS. WEIKER: Yes, I will do that and pass you a note.

DR. GREEN: Any objections?

DR. GILBERTSON: On this section, is the committee recommending that if you
are transporting attachments you will only use the 275, 277, 278 environment
that’s mentioned above? I was wondering about the use in the industry of just
transmitting the CDA by itself without wrapping it in the X12, or the
prior-authorization without wrapping it in the–

DR. SUAREZ: That’s a great comment, and the answer is no, the recommendation
is not to exclusively require that the only wrapper– that you would have to
use a wrapper every time. If the entities can agree they can exchange a simple
CDA without what we call a wrapper, an X12 transaction, they can do that.
There’s no restriction in doing that. If they are going to use a wrapper for
routing purposes, then the standard is the one we’re recommending, the X12.

DR. GILBERTSON: But if you wanted to send a CDA with a wrapper of an HL7-2.X
or an NCPDP script, we would have to wrap a 275 around it and all that as well?

DR. SUAREZ: No, the intent is not to do that. The intent is when the trader
partner agreement decides they are going to use a wrapper that the wrapper
would be the X12. It’s a matter of what is considered to be a wrapper really
versus a header of a transaction. In HL7, it’s really not a wrapper

DR. GILBERTSON: It’s more of a business function transaction. I wondered if
it was clear from the recommendation to HHS, mainly because if I have to send a
medication therapy management request from a payer to a pharmacy for example,
I’m going to send an NCPDP transaction with a CDA attached. I don’t want to
confound the industry and have to wrap it in an X12-275 and a 278 and then get
to the NCPDP transaction and then get to the CDA.

MS. GOSS: Your comment is on recommendation six, but if you go up to
recommendation five, does that sort of help put things in context? I think we
discussed specifically what you’re being up and tried to be agnostic about
necessarily the payload wrapper to some degree to give some flexibility to the
marketplace to involve using the meaningful use objective, the IAT profiles,
the query world. I’m thinking that five and six have to go together to get the
clarity that you want.

DR. GILBERTSON: Somehow that these are recommendations or these are for the
claim-related attachments based on this business case or something. If I would
just present this to, for example, the pharmacy e-prescribing industry I’d get
all these questions about is this what I need to use? Are you recommending
those only?

DR. SUAREZ: Let me suggest that we can definitely add some clarification
that is the real intent, and we can incorporate that tomorrow into our final
letter when we discuss that during the meeting with the– we’d appreciate any
suggestions on that.

DR. GREEN: Any others?

FORRESTER: Walter, in reading recommendation number four, in the last
sentence where it reads starting with care management, post-payment audits, and
any other administrative processes for which supplemental medical information
is needed, I could interpret the use of the word “medical” to be
restrictive and not allow copies of ambulance runs, copies of invoices, copies
of signed consents for other kinds of things. I wanted to raise that question.

DR. SUAREZ: That’s a good point. We’ll work on that change. Thank you for
that point.

DR. WALKER: Just very quickly I’d recommend “healthcare”. It’s in
some of the language down farther, and it’s a standard usage.

MS. MILAM: What about– I’m no expert on this– but what about protected
health information that includes all of your clinical demographic and
everything else?

DR. SUAREZ: Supplemental– but by putting “protected” it means
it’s identifiable. Maybe it is, of course, because it’s a specific claim–

MS. MILAM: So it may not be it’s too narrow.

SUAREZ: We might want to be more general like healthcare rather than
introducing a legal term into the description of it. We can discuss that
tomorrow during the–

DR. GREEN: If I’m keeping count we have five–

MR. SOONTHORNSIMA: We have clarification around pharmacy transactions,
clarification around this medical information that’s needed in recommendation
four. We have the registry of naming standard services, and that’s what I have
so far.

DR. SUAREZ: And we have the transport, or the envelope– there’s both the
pharmacy clarification and then the envelope clarification

DR. GREEN: Any others? Going once, twice– so the committee has its work
assignments now, but we would not want you to have the night off. It would be

MS. GREENBERG: On the other hand, we do need to know how many are going to
dinner, and we want standards to be able to enjoy us.

DR. SUAREZ: Well, we have our meeting tomorrow morning.

DR. GREEN: Walter, I’m going to suggest we just identify the fact that
there’s a late breaking request for clarification and endorsement from NCVHS
that we learned about in yesterday’s meeting that’s been constructed into a
second letter that we’ll do tomorrow. We’ll introduce it tomorrow. This is very
straightforward that we will discuss in detail tomorrow instead of now.

DR. COHEN: At the standards meeting or at the full meeting?

DR. GREEN: At the full meeting. Okay, so I think we’re going to recess for
lunch. What is your pleasure about when you’d be prepared to sit down again?

(Recess for lunch)


DR. GREEN: Welcome back. I don’t think we have any new members that have
showed up that need to introduce themselves. I think everyone that’s here has
already done that. We’re now going to do the 1:00 item, the population privacy
report out on the community health workshop and hearing. Linda’s leading us off
on this.

Agenda Item: Population/Privacy Report out on
Community Health Workshop/Hearing

MS. KLOSS: I am. What we’re going to do is try to do a quick getting
everyone in the gestalt of the meeting that took place on April 30-May 2. That
was a two and a half day– not a hearing, it was called a roundtable. It
started out as a joint effort between populations and privacy, security,
confidentiality subcommittees, and standards subcommittee joined in. It was
virtually, nearly all of the committee that participated in the design and
certainly all the dialogue. Our purpose, and I won’t go through this in detail,
we kind of came together, and you can see the purpose reflects the interest of
the subcommittees.

We were interested in updating our earlier picture of the kinds of data
being used by communities to address population health issues. We wanted a real
life test of the stewardship framework that had been addressed in our letter in
November; some feedback on how the federal government might help by way of
data, tools, resources; and finally, from the standards perspective, what the
current state possible gaps are with regard to data content and variable
standardization of the kind of data communities were using.

In the run up to this, we had an intensive process of designing how to
conduct such a roundtable and also gathered some additional information to help
frame the discussion. Just a moment on the design of the agenda, we invited a
range of experts, and Bruce will detail who came in just a moment, but we
wanted to do two things. We wanted to learn from all the guests that we
invited, and we also wanted to have an environment where everybody would really
fully discuss. It wasn’t a hearing that we had people come in and give their
testimony and have some discussion. We really wanted them to roll up their
sleeves with us.

The design of this was to go through a roundtable. We had, first of all, a
panel that discussed one of those four agendas. You can see panel one was about
the collection and compilation of data, and we invited some of those experts
who came to the meeting to be on that panel and to present for 15 minutes and
then we had some discussion. Then we broke out into small groups around that
topic. We divided the group into small groups, and they stayed in those small
groups for the two days. They got to work through all of these issues together.
Our goal was met by this process that we heard from and learned from the
experts, but we also fully engaged everybody because we did a lot of the
thinking in small groups.

When you look at these two slides, morning and afternoon, we really went
through panel one followed by small group work, panel two followed by small
group work, panel three followed by small group work, and then the fourth panel
was open ended recommendations and our last breakout was really to get
everybody’s thoughts on recommendations, which were pretty well framing as we
went through the two days. Then we had the luxury of an additional morning to
synthesize, and that was really nice. That was really a good dose of time,
because you know so often when we gather in a lot of this information then we
get on an airplane and lose some of the value of the process we just went
through. It was a lengthy and intense meeting, but we thought we got a lot out
of it, and we hope this was captured very well in the report that was
distributed to you.

Very quickly, again leading up to the meeting in addition to designing a
process, we did an environmental scan, which updated through some conversation,
outreach. Susan Kanaan really took the lead on this work, updating, making new
connections about how the use of data had evolved since the earlier community
initiatives in 2011-2012; also, a real data collection, a survey that went out
to our respective communities to gather some input, and I think we got about
100 responses, but again some new ideas about their processes, what’s the
current state of collecting, protecting, and using information.

We also had the pre-work that we’d done on the stewardship letter that was
available, and happily the experts that we invited, many of whom had published,
so we have some good new articles and literature and research that got
circulated to everybody in advance. I think that brings you up to the meeting,
and now we’ll move onto framing the issues for you and taking you through a
summary of our results.

DR. COHEN: Part of the stewardship was coming up with recommendations. This
was the material that was circulated before the meeting as well. I’ll just
briefly go through the framing of the issues around the roundtable. I recommend
that everybody read the write-up that Susan has produced. It’s an excellent

We were on a journey to explore data use, security, dissemination, and
support, so it’s fitting that we traveled the seven “c”s. Let me
briefly summarize what these seven “c”s are. Context, certainly
communities are becoming a lot more proactive, there’s certainly a lot more
data out there, government policies and regulations are changing, and their
notion of public health is changing.

Convergence, certainly there’s a desire to liberate the data, and users are
becoming more sophisticated in their use of data as well as NCVHS integrating
our work. Consistency is standardizing and aligning concepts, messages, and in
essence the values among the community, government, and intermediaries.
Collaboration and partnerships, valuing different perspectives from the
community, from the government, and from data holders, and really recognizing
that the whole is greater than the sum of the parts.

Conceptual framework, I think Linda talked about it in the design of the
roundtable. Courses of action, three courses, the action, preparing, that Linda
described; during, interactive nature of the discussion, which I really highly
recommend as a model as we move forward, the synthesis of ideas and getting
people in small groups to talk added enormous value; and finally the emerging
course of action, which we’re here to talk about today and tomorrow is where do
we go from here in terms of products and future direction based on this

Finally, community-driven change, so what do we mean by data driven
community change? It’s getting and protecting data. It’s integrating data into
decision-making. It’s expanding the traditional notion of public health to
address the fundamental issues of the qualities of communities, and it’s how to
use data to advance that notion. It’s understanding resources as well as
deficits in communities, and it’s really helping us evolve the role of
government in the national committee in what we can do to promote this change.

As Linda mentioned, we had just a phenomenal group of folks here, the folks
who represented local community, organizations and efforts. I won’t read all
their names. We had privacy and public health experts who talked about a
variety of issues using the data. We had national organizations that focused on
a variety of data release and data protection efforts. So where are we going
from here?

Essentially, I’m going to briefly discuss some emerging themes and some
incipient recommendations for actions for the committee. The themes,
co-production and co-ownership of the data. It’s clear from the community
perspective the importance of understanding and using data provided to
communities as well as collecting their own data. We heard that many
communities collect their own data either through surveys or qualitative data
through key informants and focus groups. Len will talk a little more about
assessing the continuum of community readiness. Essentially we heard the
message loud and clear. We need to meet communities where they are. Communities
are at very different stages along the continuum of being prepared to use data
to help them move forward.

There was a dramatic example of leveraging a key event. In Rochester, the
community came together around rats in the street that created a coalition that
has led to a lot of additional work addressing other more systemic community
health issues. We also heard, and this is a role I think we need to emphasize,
there was a discussion, and in fact a debate. Are there enough data? Some
people think there’s enough data, and some people think we need more data, but
clearly the one thing we all agree on is we haven’t done a successful job
marketing and disseminating the data to communities, and this could be a key
role for the government. Collaboration, I don’t need to say anymore.

Authentic communities, first of all we talked about, again this is all in
the report, defining communities. We’re comfortable with the definition in the
learning system report, Health Communities as Learning System, but what we mean
by an authentic community was discussed as well. Another gap that we identified
was qualitative data, which is just as helpful for improving the quality of a
community life as quantitative data. This is a huge gap in standardized
approaches to collecting qualitative data.

I think it was Denise Chrysler who came up with one of the key soundbites
for me, using the law to solve public health problems. A lot of times we see
the law and regulations as impediments to providing data and using data. We
need to change the context of understanding how to use the law proactively to
solve public health problems. Again, we need to move forward around this issue
of aligning clinical data and public health data. The train is well out of the
station, and we need to get on it, and certainly understanding the nature of
the relationship between data providers, the government, and communities as
equal partners in these discussions.

Just a couple quick slides, one of the key– I don’t know whether I can call
it– one of the key suggestions as we step back and thought about where we
needed to go, and Denise Love provided some really insightful comments about
modernizing the federal role and infrastructure with respect to providing data
for communities. Serving as an intermediary to connect communities and data,
there were lots of folks who are actually not government and not community who
are serving as data supports. We heard from the county health rankings folks.
We heard some from Beacon communities. We heard from Community Commons. After
this we heard from some folks– we talked with Vicky Booth at CDC from OSELS,
the Office of Surveillance Epidemiology and Laboratory Services, who have done
some really good work in that area as well.

Public health traditionally has focused on the deficit model of disease, but
that’s not where communities are at in their understanding of many of these
issues. There are some ideas about how to reinvigorate the federal workforce to
reach out to communities, provide direct assistance. The notion of the
agricultural extension service as a great model. In OSHA we have a great public
health extension service to support communities.

There was specific talk on the IRS requirements for non-profit hospitals now
are to do community health needs assessments, we need to make sure these are
community focused and can we use those as an opportunity. Leslie will talk a
little more about promoting the models of stewardship. Let’s not lose site on
the need for core indicators. There’s been a lot of work done, but again, there
are issues of dissemination around core indicators. Certainly, the needs– when
we talk about small areas, it’s not the feds talking about states or counties,
it’s talking about neighborhoods or communities because that’s where the action
is. I’m going to turn it over to Len for the next couple of slides.

MR. NICHOLS: Thanks Bruce. You all know by now I’m simpler than everybody
else in the room, so I like to put everything on one page and be done with it.
What this represents is what I heard in the day and a half of very fascinating
discussions. The arrows from surveys and vital statistics pointing to the red
circle where people actually live. That’s what the federal data apparatus is

The CHNA is the Community Health Needs Assessment on all non-profit
hospitals by the ACA, which starts coming online this year. The local data, for
example, all payer claims databases, that’s meant to represent what Bruce
talked about. Some people do their own data collection, and some of it’s quite
rich and robust. Some of it’s not. It’s not available everywhere, but it does
feed into that key red circle. What we wanted to emphasize for the full
committee was what we learned and what for me was quite an eye-opening fact? I
think about the world as data describes it, and that defines the facts as
elites see it.

But it turns out, as Bruce said, we heard this powerful testimony of a
community that had terrible obesity and so forth, and they were much more
worried about the rats between them and their mailboxes than they were about
anything to talk about how to manage their diabetes. What we learned was
community views can differ from elite views about what the facts really are.
Obviously, if you want to be responsive to communities, you’ve got to take
those into account.

We thought maybe we could think about the federal government learning to
listen, I know it’s rare, but learning to listen to the communities, which is
kind of a bullshit way of saying capacity assessment, how well can these folks
use the data that is available at the moment? How can we help them articulate
their views about the facts so that we can reach a common understanding about
what they really want to pursue?

The community with the little “i” there represents a number of
concepts, one of which was the basic definition of community, which the
committee has laid about before that everybody likes. We heard the word
“authentic community” a number of times, by which the presenters
meant defined by the members themselves, and therefore it can be not only
geographic but socioeconomic, racial, sexual orientation, et cetera.

The “i” was actually from an earlier typo in the first slide I
made of this that morning we were all meeting, but Vickie liked the typo
because she thought “i” represented the autonomous groups that often
come to speak for and certainly emanate from communities that may or may not be
seeing everything in the same way. She thought it was important to remind us of
those silos that exist inside communities.

The idea was what can we do to assess the current federal capacity to assess
community capacity. We turned to our staffers who are awaiting more specifics
on who to survey inside the government. The idea was to get HHS to tell us what
technical assistance activities are being done now. We’ve got some good
examples, but I will iterate to the committee, and I will certainly take more
initiative for myself from now on to let Casey know what kinds of things we’re
looking for so she can pursue resources. The idea is to produce some examples,
not an exhaustive list because that would take too long, but examples of what
the different parts of HHS are doing now that might relate to this.

DR. FRANCIS: While I’m getting that, I should say that after the Roundtable
there were two conference calls, one that was the population side working
group, and the other that was the privacy, confidentiality, and security side
working group. We were joined by staff, volunteers from the subcommittee, and
Denise Chrysler and Sharona Hoffman, who testified at the meeting.

The last day of the Roundtable, Linda mentioned we had a morning to kind of
talk about where we’d been. What we actually did was go around and have
everybody call out what they would like to see us highlight going forward. In
preparation for our phone call, we went back through the transcript and looked
at what people had actually called out. The primary things people had called
out were you can do a stewardship framework all day long, make it practical.
The second thing, don’t see privacy as a barrier. There was just a big
conference about privacy as a barrier, yuck—

PARTICIPANT: Sponsored by Deborah Peel.

DR. FRANCIS: Privacy versus– no.

What we wanted to do was to see how to get past barriers. I think this was
actually from Sallie’s comment, understanding public health privacy. How can we
understand it, use our framework to do that with respect to issues like
repurposing data, issues around sensitive information. I think this came from
Vickie, data that could stigmatize. And then the third bucket of issues that
got called out was the need for technical assistance about some of the privacy
issues and knowing where it is, figuring out how to share it, and so on.

We also pulled out Larry’s comments about how the committee works. We have a
committee or a subcommittee workgroup. We hold hearings. We look at what other
people have written. We consider what we’re going to do, and then we bring a
product to everybody here. Where we are in that process is we’ve held some
hearings. There are some prior reports. You have a summary of the most recent
roundtable, and for us on the privacy side part working with the stewardship
framework; we see our challenge, as this is really uncharted territory. This is
stuff that people haven’t really tried to think through.

So we had our conference call. We thought about coalescing, as we’re going
to move forward to products into three areas of focus, practical stewardship,
what to do about the legal barriers, and examples for communities to share on
the technical issues.

We decided we’re going to start by picking up the bear with making
stewardship practical. In order to do that, we decided we need to go back
through what we know about what kinds of data communities are actually using or
want to use. If the data the communities are using are head counts of rats per
city block, it poses very different stewardship questions than if the data that
communities are using are data drawn from claims data, all payer claims
databases, whatever, if you go back to the earlier slide.

We’re going to go back through everything that we’ve done so far, the CHIP
report, the environmental scans, and look and see what communities are actually
using or wanting to use. We’re going to see whether we need more information,
whether we’ve had enough in the way of hearings, roundtables, et cetera. Then
we’re going to try to figure out a letter or report that makes practical the
issues in the stewardship framework that pertain to the most commonly used
types of data.

Here’s that outline of what we’re going to do. Why we didn’t decide to do
the legal barriers, that’s because Denise Chrysler is with– actually with a
legal intern working with Sally going to be doing a fair amount of that. We
thought we wouldn’t use our bandwidth on that first, particularly with respect
to state sharing one or another. We’re definitely are not letting the technical
issues fall off the radar screen, but we thought in order to understand them we
needed to understand where we are with respect to the types of data that are
being used. That’s where the privacy folks are.

DR. CARR: Can you say a little bit more about what it is that you’re going
back to look at in this stewardship framework? I think you said something about
the locally collected data. Is it that there are more elements needed in that?
What are you anticipating might change?

DR. MAYS: We’re not anticipating what they collect might change. What we’re
interested in is– that’s of course a very important set of questions. That’s
not the privacy, confidentiality, and security, necessarily, top of the line
set of questions. What we’re interested in is how can the data that people have
be collected, used, stored, purposed, repurposed, saved, all the kinds of
things that happen over the lifecycle of data in an appropriate stewardship way
so these things can actually be done? The answers to those questions, what do
you need to do with it, really differ depending on what you have. If what you
have is very high level and automized data for whole states, the questions look
different. We wanted to know what people are actually using and clamoring to
use, so that we can then see where it interdigitates with the stewardship

DR. GREEN: Is that satisfying Justine?

DR. CARR: I think I’ll understand it better when they’re ready to talk about

DR. MAYS: Two comments, and I’m going to start with the privacy.
Unfortunately, Tessie Guillermo wasn’t able to be here who’s with Zero Divide,
but she sent me an email on Monday, and she’s kind of doing some of this. I’m
going to read you a couple of sentences because you may really want to talk to
her, but the foundation is working in LA with 17 LA county social service
agencies. They’re refurbishing a building. They’ve decided all these different
agencies are going to become a medical home concept.

They’re working on putting an infrastructure together for them to be able to
deal with data. She’s talking about how they’re working on data privacy issues
and that they’re integrating community based delivery system of the future for
this area. They’re implementing the plan, building it out. They’re providing a
data privacy assessment and interoperability plan as part of the overall shared
data infrastructure.

DR. FRANCIS: Just send it to us. We need to know about it. Part of all this
is trying to find out what’s the good stuff that’s out there.

DR. MAYS: My second thing has to do, and this is directed to Bruce, one of
the things at the community, at the table– I want to bring this up again, and
I’m being a broken record about this. But one of the ways that we suggested as
opposed to even Casey having to get so many examples, is actually bringing the
staff from these agencies that do this all the time, having them at the table

I’m really getting the notion that some of our work would be better informed
by having a different set of people. I know we talked about it, but I guess I
don’t know where it is, having SAMHSA at the table, having HRSA at the table.
They have such large outreach for communities that I think our work would even
go faster. Jim’s not here, so I don’t know who else to direct it to, but I
think we said it was a good idea, but I don’t know where it stalled out.

MS. QUEEN: Some of it depends on whether you’re talking about having staff
just come as staff versus being a liaison.

DR. MAYS: A liaison?

MS. QUEEN: Where you have somebody that’s going to more formally be a
presence in a more regular way, which I think for this particular activity
would be really important.

MS. GREENBERG: I think that’s one of the goals of the technical assistance
workgroup, to reach out to these additional– we reached out to the folks down
in Atlanta in OSELS, because NCHS is in OSELS, so that was pretty easy. I think
we agreed in the call that we had that we would reach out to SAMHSA, to HRSA,
anyone else we think is working in this area, and try to engage with them at
least around that workgroup.

Hopefully that could lead to more long term staffing of the Population
Health Subcommittee if the subcommittee is going to keep this topic front and
center for the foreseeable future, which it certainly looks like full
employment to me, but something else could come up. As Susan said, that’s
different than having a liaison, but they’re not mutually exclusive by any

DR. MAYS: Can we start at the level of liaisons and see if they say no if
they’ll be staff as opposed to doing it the other way?

MS. GREENBERG: As Susan said, we’d have to talk to Jim about that. I don’t
know whether there are people from SAMHSA and HRSA who sit on the Data Council.

MS. QUEEN: I think these might be some different individuals from the Data

MS. GREENBERG: Obviously ASPE is in touch with these people all the time.
I’m not saying this in a critical way at all, but we have mixed success in
really engaging our liaisons. I look around the room right now, and I don’t
think any of them are here right now. We had Mike Fitzmaurice on the phone, and
he’s the most loyal. Charlie was here on behalf of NCHS. We often have them at
a pretty high level, and then they often have conflicts. We have our ONC
liaison who reported on the phone.

I think we have to just think about not what position we want these people
to be in but what do we need and what do they need and what will make for the
best conversation and interaction that might have some longevity to it.

I don’t think we need to solve that during– but we hear you. I myself would
rather– just saying to someone we’d like your agency to have a liaison, and I
know because we’ve done that, it doesn’t often– they don’t rush towards us.
But if we say, we’re talking about these areas that you are doing a lot of work
in, and we really don’t want to reinvent the wheel or we want to learn from
you, and we want to see how we can work with you to support what you’re doing,
then people– they do. Certainly we had that experience with the people at CDC.
They were very receptive and happy to be with the technical assistance
workgroup and sent us a really great document they had just put out. With all
due respect, I’d rather start at that level. Then if there’s a lot, then it’s
more of a no-brainer as, well it’d really be good to have someone who’s always
engaging with the committee.

DR. SUAREZ: A couple of quick comments. One is the Standards Subcommittee
was actually also a sponsor of the event.

DR. COHEN: Before you came in Linda mentioned it.

DR. SUAREZ: Okay, so I guess I wanted to highlight a few important things
about standards in the context because we’re known for standards related to
HIPAA and all that, but we’re beyond that. We’re much larger than that. In our
Standards Subcommittee we’re also looking at standards related to think-tank
public health and community exchange.

I think it’s important to consider standards in the context of three or four
things; data content that is used by community health data initiatives, data
collection and use standards, and then data exchange and disclosure standards.
What I’m talking about is really the methods and mechanisms for doing that.
There’s the whole area, of course, of stewardship and policies around the
exchange and collection and use of standards. I’m talking about really the
standards level. I wanted to bring that perspective because I think it’s going
to be important to include that in the framing of the findings and
recommendations from this.

DR. COHEN: I think you’re absolutely right. Sorry, I didn’t mean to overlook
that, but there’s been work going on that we need to build on. We heard that
loud and clear. Is smoking defined the same way? We do need to understand and
make sure our language is standard when we talk about public health related
issues. Thanks.

MR. SOONTHORNSIMA: Just to help clarify, one of the slides you talked about
practical use of the stewardship model. Is that the next step, to try to
identify examples and apply the concept to demonstrate practical use of it?
Very good. Furthermore, I wonder if we talk big concepts, in your findings did
you find that people actually had different goals in mind?

For example, they could have specific goals around smoking cessation or
specific goals around—are there some common goals as you start talking
about all these entities. My take is different goals would require a different
set of parameters and information you would try to draw from. Are there any
common threads there?

MS. KLOSS: There was really good conversation about a continuum of needs.
We’ve got HIPAA privacy issues pretty well nailed down. If a community is using
data that’s personally identifiable out of an electronic health record, the
ground rules are pretty clear, although they may need to be articulated in a
way that makes them clear to people who aren’t used to working in that world.
There’s a continuum of needs. Within the framework how you interpret
authentication varies a lot depending on the type of data, so that’s why we
thought we need to start by seeing if we could chunk out the data and then
overlay the stewardship framework and see what gets adjusted for different
circumstances, and then instead of writing abstract guidelines see if that
could be indicated through case studies, how communities have tackled these
issues in very practical ways.

MS. GOSS: I’d like to build on what Marjorie said and also some of what
Walter was commenting on in regards to the data and getting the agency’s
leadership to commit to an effective and ongoing liaison relationship where
they have leadership support such that when there’s a consensus on the
direction we need to take that there’s an ability to effect that from the top
down from a policy perspective so that when the states and other communities
are trying to address regulations and synergies within the larger state
community or within the neighborhood communities that there’s a consistency of

One of the things that I’m seeing happen consistently from my Medicare days
now to working with Medicaid and the public health arena is that despite the
best efforts to break down silos the walls still exist, the messaging is not
consistent, and the funds, we all know, are drying up, and so we’re having
those become the barriers to our ability to get the data to be where it needs
to be effectively reusable to all the things that Leslie was saying, and that
ultimately that we’re not necessarily getting the adoption, use, or compliance
of standards whether it be a privacy and security framework or a technical

This then erodes the quality of the data you want to get at to help a
community. To Marjorie’s point we need to get almost—I don’t know if we
can draw blood on it, but somehow get some level of firm commitment at
leadership levels that starts to ripple through the way we architect policy and
regulations that end up coming back around to the quality of the data.

DR. GREEN: Well, I’m going to make a shot at wrapping this part of the
agenda up. I’d ask you to wake up from your postprandial state for a moment and
put your memory to work. Let’s remember some stuff about how we got to this
moment in Washington in June in 2013. We believe as a committee that this is a
true statement: health is a community affair. We as a committee recognize that
we have stubborn intractable gaps and shortcomings in elevating the individual
in population health. We recognize that the way we’ve been approaching solving
those gaps has been dramatically unsuccessful. That has made us open to
alternative new ways of thinking.

The ONC and others have impressed on us how healthcare delivery systems must
be come learning health systems. They don’t do an audit every ten years. They
are constantly learning about themselves, what’s going on, and all of that
depends on what? Data. They need to become data-driven organizations, data that
can be turned into information that’s actually actionable and usable and can be
used to benefit people. We have discovered that communities are doing their
darndest to become learning health systems, which is very good news since it’s
a community affair. We’ve also discovered there is not a framework for that
work. There are not standards for that work. It surfaces new privacy, security,
and confidentiality issues that are unaddressed.

We don’t know how to do this. It is not an academic, as in irrelevant,
exercise to focus on communities because we’ve learned that communities plus
data equals the nexus in which improved health can occur. That’s our belief
structure. We’ve noticed that there are new information technologies that are
widely adopted. We had one of those beautiful “aha!” moments this
morning when the Office of Civil Rights blew us away, and to quote Walter
again, “I had never thought you could think of OCR and YouTube in the same

You’ll recall from those of you who were at the standards hearing that
Marjorie said earlier this week that it would be embarrassing and disappointing
for NCVHS to be here next year still talking about a roadmap for the sequencing
of the HIPAA implementation rules, the way they need to line up. Linda chimed
in and said we’ve got to get the spacing and sequencing down. I submit to you
that it will be embarrassing and disappointing if we’re here next year at this
time still talking about stewardship frameworks without operationalizing it,
without actually tackling the specifics about what is necessary.

I think it will help us if we remember that our goal here is to enable
America’s communities to become learning systems for health. This is in our
bandwidth and our history to envision what that could look like and to lay some
sort of foundational, conceptual framework about how that can be advanced and
where attention needs to go. The thing I learned out of the discussion just now
was that I didn’t learn the first time, second, or third time, or however many
times we’ve been through it, how critical in our tactics it is to get NIH and
HRSA and SAMHSA and the other federal agencies into this conversation given
that list of where the committee just said this is where we think we need to go
next. That is absolutely crucial. Unless one of you wish to object to the
directions these committees have consolidated, I think that’s the answer to the
question as to where are we headed next. Are we on the same page? Is everyone
in your comfort—Bruce, you’re okay?

DR. COHEN: Great, thank you.

MS. GREENBERG: Do you want an amen?

DR. GREEN: I’m not exactly sure what happened, and I’m also not sure that I
like it. This requires the committee to work as a committee of the whole. We
don’t want to waste our time if we’re going to be going divergent pathways in
our committees. It looks to me like we’re unified here, unless someone wants to
file some dissent?

DR. SUAREZ: Not dissent, but beautiful manifesto. The question I have is
more of a concrete next step. What is it that we’re going to do about this? I
know we’re going to put together a report, so if we could summarize the next
steps, it would help.

DR. GREEN: So we’ve got the meetings this afternoon and tomorrow morning,
and then tomorrow morning when we come back, let’s see if we can put some meet
on these bones.

MS. QUEEN: I would add only also that you may want to consider other
agencies as well like ACF, IHS—

MS. GREENBERG: Sure, it’s a big tent.

DR. GREEN: Absolutely.

MS. GREENBERG: But we’re going to need your office to help us because you
have those contacts, and we have some but not all here at NCHS. You know the
right people. I do feel that from our experience with the OSELS people that if
we reach out to them in the way that I described—not we need you to help
staff the committee or something, but we need to learn from you and we’re in
this—I think we’ll find people. Even if they don’t have time, they’ll make
time to the extent they can because they’ll be able to leverage what we’re
doing and vice versa. I’m optimistic about that.

MS. KLOSS: I think one other outcome of the roundtable is that we’ve made
some important new friends, that we’ve expanded this community of communities
in really important ways. Even at the Datapalooza we ran into some of those new
friends who remain very enthusiastic about helping to field test and contribute
and stay connected. We had two of the experts join us on our follow up call. I
think that’s a really important outcome that we need to really leverage, too.
It may be some additional planned communications.

MS. GREENBERG: I do think there’s some new policy being discussed about
subcommittees and workgroups, and with subcommittees we pretty much follow that
it’s like the full committee anyway even though that hasn’t been really
required, but I think we do need to make sure of how we can involve these
people—make new friends, but keep the old—on a more regular basis.
They were reaching out to us saying, I think I volunteered for that workgroup,
when are you meeting? That was good. I think we have to work on that, but I
think we made a lot of progress in that regard.

I did want to say, because—well, I guess I should always have my exec.
sec. hat on, but my exec. sec. hat and being responsible for the NCVHS team
that I really want to recognize Katherine Jones and all the team members
including the lead staff, Casey, Debbie, of course Maya, Susan. I both agreed
and shuddered when I heard either Linda or Bruce say, and this should really be
a model for how we have meetings because I’m telling you this was really a tour
de force. She might not get a lot of credit for it, but she has experience
doing this in her day job or day jobs in the past, and so she was very helpful
in guiding us. We’d never done anything quite like this before.

We had not only these panels but four breakout sessions in which after each
one they came back and reported and then we brought it all together. Maybe some
of us have been to meetings like this, or conferences, but not at NCVHS. We had
three facilitators from the toastmasters group at NCHS. Each of the groups had
a subject matter expert. Sometimes a staff person had a recorder. I frankly
said at the end of it, I was very exhilarated, but no more than one of these a
year. It’s not always the appropriate model, although we had the standards
roundtable, which set the groundwork for having a roundtable. Like the meeting
we had yesterday, we weren’t going to keep going into breakout groups – it
depends on the topic.

But I do want to recognize the staff and support, as well as the members who
really rolled up their sleeves, had a lot of teleconferences to get it all
right. This doesn’t just happen. It really required a huge amount of effort on
the part of the members and the staff and the participants. I want to recognize
that and also say that it’s not that—we’ve done it once and we can do it
again, but I don’t want to minimize the effort that people put into it. I’ve
only learned afterwards, as involved as I was, some of effort that went on
behind the scenes just to make it work.

DR. GREEN: It worked, and we’re quite grateful for it. Maybe we’re finding a
new groove here. If you have not been able to sit down and actually
thoughtfully read Susan’s summary that’s in our materials, I really urge you to
do that. It’s another home run depiction of this. It’s very, very rich stuff
written understandably, in the way that it’s organized, and it makes sense.
It’s one of our guidepost documents now. We want to keep that close and keep
coming back to that.

MS. GREENBERG: It will be posted on—I consider it finalized, right?

MS. KANAAN: It still needs some slides.

MS. GREENBERG: Oh, some appendices, okay. When we get those all together it
will be posted on our website. I must say when we sent it out, including to all
the presenters and everything, the main comments we got back were this is
terrific. We have some little tweaking, but very little. It will be posted.
We’re not going to transmit it to anybody at this point, I don’t think, unless
you want to.

MS. MILAM: We’re discussing that in our subcommittee.

MS. GREENBERG: Fine, we’ll come back to that tomorrow.

Agenda Item: Community Health Project Panel at APHA

DR. GREEN: Okay, so in terms of the 3:15 item, we’ve pretty well done that
for this part, what we just covered. Now we’re going to go back up to the
agenda. Let’s ask Vickie—I don’t see Nancy, so Vickie this must be you.
This is the 1:45 item.

DR. MAYS: This should be simple. This is one of those– if you’re looking
for “amen” or “hallelujah” or whatever, it’s good news.
During the time that we were putting on the hearing, the issue of APHA
submissions came up. We had made a bit of a commitment here to try and extend
ourselves to be a little visible in some other places. I put together a list
with everybody’s help, particularly with Nancy Breen’s help, a submission to

The abstract, so the goal of the presentation, you saw that really what it
was about was supporting health data for community-driven change. The abstract
really talks about part of what we’re going to do is examine data as public
goods, and you’ll see when I do the presenters where this comes from; look at
what the tools, measures, policies are for developing the community health
learning systems, and we have somebody from the IOM working with us on that;
and the third thing is to get the participants in the session to talk about
ways in which health data can be employed to support community-driven change.
That specifically will be done by Bruce as a way for us to get some public
input into the activities that we’re doing.

First presentation from the IOM I tried to actually get Harvey, since I know
he love the concept, Harvey Fineburg, but he wasn’t able to do it, but Claudia
Grossman who’s a senior officer at the IOM is doing the presentation. She’s
really going to talk about digital data and the learning system. For Claudia,
she really wants us to think about things like how digital data contributes to
better health outcomes clinically, and she wants to do it in terms of local as
well as national population level health. Claudia also wants to talk about the
effective components and community improvement of health of populations. I
think you’re going to find this will be IOM in terms of where it’s taking the
learning health system in terms of digital data.

Here is a very interesting one, which I thought the privacy people would be
very interested in. I don’t know if you know Mark Rodwin– oh okay. He’s a bit
of a character from what I’ve come to understand, but anyway, public use of
patient data for public health. I read some of his work, and he has a variety
of papers in which he talks about the fact that, for example, clinical trial
data, he says this belongs to the public. It doesn’t belong to us as
researchers to keep. He’s really very much into the notion of data that is
funded with your tax dollars, that it belongs to the people. He talks about how
you’re supposed to get this data out. He likes to tell people what it is that
they own and what kinds of things they should do. For the community people
there, I think he will be very interesting.

Bruce can talk maybe even a little bit more because this is a local
community group in the Boston area—well, Wooster, I think. Here what
you’re going to have is a case study. This is a community group that’s in a
partnership with academic organizations, academic and I think government
organizations, and it really is going to talk about how when you bring these
groups together ways in which it ends up with healthier cities. I guess they’ve
been working on this.

The other thing that she wants to talk about are strategies. I thought that
was very good. Somebody’s going to do other than just here’s what I know but
actually present some strategies on how to keep diversity in terms of
generating new knowledge on data that is shared among the groups as well as
some of the strategies for disseminating in order to improve practice and
advocate for policy change.

This is a member that’s a part of our workgroup. Most of you know him, and
most of you probably know a lot about the county health ranking experience. We
thought this would be a good presentation to have. He’s going to talk about the
training that’s necessary, the technical needs, in order to have local public
health officials develop local health estimates. We’ve talked about this issue,
small being local area estimates. Patrick’s a great person to be able to do
this, and he has a lot of data that he will use in this lecture.

He also is going to talk about how to do the collaboration, how to build it.
Again, this is something he’s spent a fair amount of time attempting to do in
order to get the data that he has. He’s also going to talk about how to do the
collaboration, how to build it. Again, this is something he spent a fair amount
of time attempting to do in order to get the data that he has.

The moderators will be myself, and Nancy Breen is not sure if she can go
because she’s a fed and they can’t promise travel. There’s somebody else that’s
in Boston that would be absolutely wonderful and great to join us. Can you
check your calendar?

DR. CARR: Are you talking about me? My nephew plays for Northern Illinois,
and they’re playing at Gillette stadium on Saturday. All of the relatives are
coming to my house, but what day is this?

DR. MAYS: It’s Monday, November 4, 12:30-2:00. We’ll see if we can get her
to check her calendar. Anyway, Bruce is going to be the discussant, and Bruce’s
role really is to utilize the audience to talk about NCVHS activities and get
the audience to give us some feedback. I think by November we will probably
have a lot, and if at all possible, it would be great if we had something to
hand out for that meeting.

MS. GREENBERG: We have the summary of the Roundtable.

DR. MAYS: I’m just putting it out there, because we did this. I did all this
work and we said we were going to try it, get ourselves out there. This would
be a good time to bring publications or send them to Bruce’s office or
something and be able to hand some of this stuff out at the meeting. This is
where we can get some more people engaged with us. I told you it was just news
and hallelujah.

DR. COHEN: For my piece if folks have questions they want me to use as part
of the discussion, please let me know, from the committee as a whole or any of
the subcommittees given this framework. That’d be valuable. I have to figure
out what I’m going to say. You didn’t mention the cocktail party at my house.
It would be helpful to know about how many folks from NCVHS will be up in
Boston for APHA. Maybe we can have a caucus at my house—make sure the
transcript reflects that.

MS. GREENBERG: We can talk about that at the breakout session. Right now
it’s not looking like you’re planning a separate meeting. It’s too complicated.

DR. COHEN: I don’t know how to arrange that. We could try, but I just don’t
know how to arrange that.

MS. GREENBERG: I think this will be great outreach. I really thank you for
developing this. I would hope to that one of your panelists is addressing
privacy issues, but that at that point, wherever that work is, just let people
know and make more friends. We’re into making new friends. We’re obviously
running a little behind. Larry had to go get his picture taken to make it
easier for him to come into the building as the chair, but hopefully he’ll be
back soon. He just asked me to keep things flowing here. We had a real
introduction to the next presentation when Charlie spoke this morning, but we
now can get into this in somewhat more depth, and that is the whole topic of
the e-vital records standards and the elements of the convergence theme that
you have embraced as a committee.

Michelle Williamson is the team leader for the informatics team at NCHS at
my staff and classifications in public health data standards and has been
leading this work. Hetty Kahn also in the audience there, raise your hand, has
been very much involved and Tamara John-Paul as well. I’m very proud of the
work they’ve done. Delton Atkinson, I don’t know if many of you have met
Delton, but Delton is a deputy director of the division of vital statistics,
and he’s now the acting director of the division of vital statistics because
the director of that division, as you know, Charlie Rothwell, is now the acting
NCHS director. Like Charlie, Delton has been active in health statistics and
vital statistics, not for as many years, because he’s not as old as Charlie and
I are, at the state level as well as at the national level and has been a great
champion of this work that we’re doing. Take it away.

Agenda Item: Vital Records

MS. WILLIAMSON: I am happy to talk about the work that we’ve been doing to
support developing standards for vital records. I’ll give you a very quick
overview of the national vital statistics system in one quick slide. It’s
really a system that provides information, captures information on births and
deaths in the US. Over six million vital events are registered annually, and
that information comes from all of the jurisdictions within the US, 57
registration areas in all.

Information is collected on a wide range of information, so we have
geographic information, demographic information, medical information, the whole
gamut in vital records. It really comes from over 4 million birth certificates
as well as 2.4 million records that are documented for deaths and fetal death

The topic for the committee today, I know following this session is on
convergence, and when you look at the nexus of convergence I think vital
records is right there because you’re looking at population health information,
you’re looking at clinical information, you’re looking at the whole gamut,
administrative data as well. There are several issues that plague the
collection of information for birth certificate and death certificate

One, and I know it was mentioned earlier today by Charlie’s presentation,
the need for more information, faster information. Everybody wants it now. He
talked about being able to have reports eventually so that we’re getting that
information from mortality information, and again faster. There are costly
re-engineering efforts that are going on within the states, and even with that
there are still problems with integrating the information from vital records
systems with other public health information systems. We’re collecting the
information for vital records. Some of it is the same information we need for
early hearing detection intervention, other programs, but no integration of
those systems.

We believe there’s the need for a standards-based approach to collecting the
information from vital records. If we just look at the birth information, for
instance, much of the information that’s collected for the birth certificate,
the mother’s information as well as the infant’s information, is collected in
the medical records. We believe, vital records believes, that it is the
recommended source for the information, but again, very little integration,
even if there is an electronic health record system to get that information to
vital records.

Currently, the typical scenario is very much paper based. We have a paper
facilities worksheet that is used to collect much of the clinical information
for the mother and the baby, and then there’s a separate mother’s worksheet
that the mother will provide demographic information, geographic information,
information about paternity and so forth. Still, if the hospital has an
electronic system, they may have someone, their birth information specialist,
go to a separate standalone system, take that paper form where they’ve
extracted information from the record, and they’ll go and enter it into the
separate system.

This slide provides a graphic representation of what I’ve tried to describe.
You’ll see so many inputs to the information into the medical record, yet still
no connection between that and any electronic system, a separate web-based
approach to get the information that’s needed, and then to send that
information on downstream to NCHS where we can do our number crunches.

NCHS has a vested interest, obviously, in this information, and what we’ve
decided to do, and we’re very pleased that Marjorie’s group as well as the
collaboration that our group has had with the division of vital statistics has
been to focus on what we call the e-vital standards initiative. That is to try
to develop a standards-based approach to support interoperability between an
electronic health record system since much of the information comes from the
EHR anyway or a medical record. Let’s focus on the EHR and see if we can get
that information from the EHR and send it directly to vital records.

If we’re able to do that, the picture changes a bit. That’s what we’re
trying to depict here. Now we have the information being entered directly into
the EHR. We’re collecting the information at the point of care or point of
contact with the patient, getting that information into the system one time,
using it again for population health and other purposes. We think that’s a good
approach, and I know Delton made a statement at the National Association for
Public Health Statistics and Information Systems at their annual meeting last

For those who are not familiar with NAPHSIS, that’s the acronym for the
organization, NAPHSIS is an organization that represents all of the vital
registrars in the US. All of those 57 jurisdictions that I mentioned, they have
representation in NAPHSIS. At the meeting last year, Delton talked about the
EHR system and these e-vital standards initiatives, the work that we’re doing
in that area. He said we have a hypothesis. We believe that this will make a
difference. We believe that this will improve the timeliness and the quality of
the data, the accuracy of the data, get rid of some of the redundancy.

Even though we believe that, there are still debates. Can you believe it?
There are actually people that debate this issue. They do. They have a strong
position. They say we are the registrars. We are legally responsible for this
information. Can we trust getting this information from the EHR system? Can I
sign off and say it is quality information? There are a lot of debates in that
area. Then some say you believe, but it’s only a hypothesis. You can’t say it’s
going to improve the quality of the data. You can’t say it’s going to improve
the accuracy. All of those debates continue. Despite the debates, we believe
very strongly that there’s a need to lay the foundation for developing
standards in this area. We’ve put a lot of effort, a lot of time, and work in
trying to develop the standards to create the foundation.

What we see in terms of the future in that foundation is having a
standards-based approach. We focused on the two primarily HL7, health level 7
because they are in that clinical space of developing standards for health
information, and then the IHE based standards which are also based, many of
them, on the HL7 standards. We believe it’s going to improve that timeliness,
accuracy of the data. Did you want me to pause, Bruce?

What have we developed to date? Due to the limitations on time, we don’t
have time to go through the breadth of standards that have been developed. I
will say from a high level we’ve developed domain analysis models that explain
the activity models, the exchange of information, what is being captured, that
is an HL7 model that has been published. We’ve developed based on HL7’s
electronic health record systems functional model functional requirements that
are specific to the needs of the vital registration community. We’ve developed
the 251 standards. Some have been published. Some are in the process of being

They have been validated and hopefully will be published by the end of the
summer for both birth, fetal death, and death reporting, as well as CDA,
clinical document architecture we’ve also created in that space. We created
both based on the feedback from the vital records community. We had a
discussion with our stakeholders before creating the standards, and they said
all of us can’t do CDA. Please, come up with a venue so that we can do a
version 2X standard and also create CDA, and then we can transition as need be,
but at least it wouldn’t inhibit someone from getting on board.

Then we also have created a content profile with IHE, and the content
profile I’ll talk a little more about in a moment. It provides for
pre-populations, so the messaging and the document standards can send the
information where the IHE content profile is based on what IHE calls a
“retrieved form for data capture”, RFD, and it allows us to use that
facility’s worksheet that I described in the beginning as the foundation for
sending information across and pre-populating from the EHR system. I’ve
included the URL that we have on the CDC’s website that includes a list of
details for each of the standards that have been developed, and you can get
more details there, or we’d love to back to standards and give you more.

We have done some testing and some demonstrations. Much of the testing right
now for the death standard is happening in Utah. NCHS provided support for the
state of Utah in conjunction with Intermountain Healthcare to test the HL7
version 251 standard that we developed for the death certificate, and that is
going on right now. We also have participated in the IHE connect-a-thon, and
those of you who are not familiar with the connect-a-thon, I like to call it
the geek-a-thon. You have a bunch of geeks, we all get together at the table,
and everybody is with their system. They’re competitors who normally don’t talk
to each other because they’re competing with their products, but in this venue
they have to test these standards that we’ve developed and that have been
published at IHE, and then they get a grade at the end in terms of whether they
have successfully tested.

We develop the standards, and then they opt in as to whether they want to
test them or not. The locals that I have on this slide represent the
organizations and vendors that participated in the 2013 and successfully passed
the testing for our birth standards. We also have presented a demonstration,
Bruce talked about it a little bit earlier today, with vendors showing how this
data can actually move, giving you a live demonstration. Again, we’d love to
bring that to the committee to see how this actually does work, can work, and
then also at HIMMS we presented.

Through the work we’ve identified a few barriers. There are always barriers
along the way. I mentioned earlier that some of the states do have concerns
because they say we’re legally responsible for this data. We want to be sure
that it’s accurate so having a proof of concept to show that it does work. The
big one is funding. As we’re moving forward with the standards, I notice a
transition in the culture of thinking.

Initially I’d say about five or six years ago when we came to the NAPHSIS
conference, Hetty and I, to present to them about using standards, when we left
the stage I asked her did she feel the daggers as we slowly walked away. Years
later we feel the difference. Now we have folks coming to us, especially at
this demo that we had this year. I’d say about 100 people attended. It was
amazing. People came up, the vendors, they’re starting engage them. They’re
interested in seeing this in their product. They want to test, and they’re
looking for money. They want money to help support these pilots. It’s a
struggle to try to get there, but we hope we can.

Another big issue is HR vendor adoption of these standards into their
products. I’ve engaged with a lot of vendors, especially in the connect-a-thon
activities, and right now Epic, as far as EHR, has been the biggest player in
the game. GE Healthcare did some testing in the past, but when I talk to the
vendors and it’s time for them to sign on for IHE for connect-a-thon testing,
they’re like test our profile.

They say are you in meaningful use? Not yet. Well, let us know when you’re
in meaningful use. I say if you’re not in the meaningful use line, if you’re
not in that line, I say let me know later, go to the back and we’ll talk later.
The other is customer driven, if they have a customer that wants it. It’s kind
of a circle trying to get them on board.

Finally, vendor readiness from the vital record system side, Genesis is the
vendor that participated and has been for the past couple of years. We had
another vendor, ManTech come on board for some initial testing this year in
connect-a-thon as well, and we’re starting to see that market open up. I know
Gold Systems is another one that approached us at the NAPHSIS meeting saying we
get it, we need to start looking at this space, and looking at standards, and
implementing them. If we have an EHR system or someone adopts a system that can
use this information and you don’t have a vital records system that can receive
it, we still have a problem. There has to be the work on both sides. If we have
time, we’d welcome any questions.

DR. COHEN: Thanks Michelle. As many of you know I’m on the board of NAPHSIS,
so I think I’d like to provide a little context to some of your comments. Vital
statistics, the primary goal of vital registration is a legal responsibility at
the state level. I think sometimes when I sit in these discussions I lose site
of what it is the registries do on a day-to-day basis in their communities.
These are foundational documents that establish who people are. The vital
statistics community has been in the last ten years primarily focused on
figuring out how to create a secure system for these foundational documents to
establish identity.

Secondarily, folks like me push the vital registrars to really understand
the importance of the information that’s collected for understanding population
health. I think it’s important to understand on the ground and in communities
most of the time in vital registration nuts and bolts is being at the counter,
getting kids registered for social security cards, providing information for
drivers’ licenses and Medicaid eligibility.

I’m working now with Homeland Security around issues of identity fraud. The
resistance– and I agree with you I think the culture is changing, that there’s
a lot less resistance to focusing on interoperability issues with respect to
connecting to the medical care delivery systems and EHRs. For the first time I
saw at the NAPHSIS meeting real focus on understanding that meaningful use is
upon us and vitals needs to move into the modern age. At the same time, there
will always be this bimodal distribution of priorities in vitals around
identity establishment, that the legal primary responsibilities of vital
statistics at the state level and a lot of these national concerns.

MS. WILLIAMSON: I’ll add to that to say I think it’s been a wonderful
collaboration between our office, NCHS, and NAPHSIS, and other vital records
stakeholders to develop the standards. We didn’t in a vacuum work on this. We
solicited NAPHSIS membership to get people to engage. We’ve been shaking hands
and holding hands along the way to develop these standards. Anytime something
is balloted, NAPHSIS’ e-health committee is reviewing it, so it is a great

DR. COHEN: I agree it’s been a really constructive engagement. This has been
wonderful for us in the vitals community to have this partnership. I want to
certainly thank you guys here at NCHS for it. It’s been really great.

MS. WILLIAMSON: Thank you for coming to the demo. I was excited to see you
there and I know Alex got a little taste of it at the HIMMS meeting.

DR. COHEN: We really should do it for the full committee. I really hope that
we can try to work on putting it together for our next meeting. I think the
entire committee would benefit a great deal for understanding and seeing
exactly where we’re at with this.

MS. GREENBERG: From what I heard, too, you had people dressed in black for
the death registration, roses and things like that, so it was kind of fun.

MS. WILLIAMSON: We had one side of the demos for the birth and one side for
the deaths showing the Intermountain Health project from Utah. The lady from
Utah, when I told her, I said I want you to depict being the funeral director,
and she came in her full black garb. She actually had little vases of flowers
to pass out as people passed by.

MS. GREENBERG: I think what Bruce said is so important because as you
probably know, or maybe you do and maybe you don’t, there’s really been a
reinvigorated interest in vital records and vital registration internationally.
There was a big push on this maybe 30 years ago or more, and then the funds
dried up. Now our direct of CDC, Dr. Frieden, is very supportive, particularly
in Africa. It’s really a human rights issue as much as a statistical issue, an
administrative issue.

As Bruce said, it establishes identity. If you can’t establish your
identity, as one of the former directors of WHO said, if you don’t count
people, they don’t count. In most countries, in many countries, there isn’t as
close a linkage actually, even though Bruce is absolutely right, that is the
first responsibility of vital registration. In many countries it’s even more
complicated than it is in the US because in completely different agencies, like
the interior agency deals with the vital registration and then the health
agency is begging for the data for population purposes. At least in the case
they’re a little more closely aligned, but it’s attention both nationally and
internationally. We have to be respectful of that responsibility of the states
and what their requirements are.

MS. WILLIAMSON: I’ll say at IHE we did get some interest from the French.
There was a representative from France who actually helped to develop the
initial profile that we based ours off of. They actually used the US birth
certificate as the model, but they are following suit and doing something
similar with their product in focusing on the EHR system and trying to send
something to vital records. We often talk about the two projects, and we are
getting more international interest in what we developed. During the last HL7
meeting, we had representatives from the Netherlands as well as from India come
in and inquire, so it’s increasing.

DR. MAYS: I just need a little help here. I’m trying to understand how this
works relative to the death certificate. The birth seems easy, seems slam dunk,
but the number of different ways that we get to the death certificate– can you
talk a little bit about that? It seems like here you’re going from EHR to the
certificate. I’m trying to understand how the funeral director and all these
people are involved to get to the same place.

DR. ATKINSON: I’ll respond to that. On the death side one of the things
we’re trying to do is create electronic death registration systems in every
state. We have about 36 states right now who have an electronic death system,
but they’re not all statewide and don’t cover all the various actors. The
electronic death system, if it works properly, is one where the funeral home is
entering in the demographic information. Once that is done the system sends an
electronic message to the physician who then goes on board to enter that
information electronically on the cause of death.

Michelle mentioned in Utah one of the things that they have done is to embed
within the electronic medical record a specific death alliance information that
is needed so if the person dies in the hospital and then Intermountain
Healthcare, which covers about 65 percent of the doctors in that particular
state, in their particular area when the physician is filling out that
electronic medical record, if the person died, then the system will
automatically bring up a screen so that person can enter the cause of death
information. That death information then is electronically transmitted to the
state. The physician or clerk doesn’t have to log out of the electronic medical
record system into the state’s electronic death registration system. It’s all
done automatically. The physician really doesn’t know if he’s in one system or
the other.

MS. WILLIAMSON: As Charlie mentioned this morning, it also gives them access
to the medical record because they’re right there, so they’re completing the
certificate, they want to pull up some information. They’ve also added links to
information like how to complete a death certificate because some of the
physicians may not do this very often in terms of completing it. They have the
NCHS detailed instructions embedded within that provides into that link. It’s a
lot of resources.

DR. MAYS: Will you be able then to reconcile the race issue? That’s one of
the biggest problems we have, you’re born American Indian and you die white. If
we’re still going to have the funeral directors, et cetera, putting in that
demographic data, and if it can then be linked with the health record, is there
any way to check those things so that we can actually get accurate data?

DR. ATKINSON: With the death certificate, it’s like Bruce said, the first
thing is the legal document. The responsibility for the demographic information
will still rest with the funeral homes. We’re still going to have those
differences. We’re going to have to figure out how we’re going to wrestle with
that. What will get coded as of record is what that funeral home captures.

DR. MAYS: When it comes to the health record, the health whoever there is
responsible for checking and they can indicate if there’s a discrepancy that
pushes it somewhere for someone else within vital records to actually go and
reconcile it.

DR. ATKINSON: I do think that in Utah the way they’ve set theirs up is the
information from both sides is captured in a staging environment so they can
actually see what those differences are. I’m not sure they thought far enough
in the process to figure out what do we do if there’s a different between the
two or whether they just automatically accept what the funeral home– I think
they automatically accept what the funeral home provides.

MS. WILLIAMSON: From a technical standpoint we can do it, but I think it
comes down to process, if they want to deal with it in their system.

DR. FRANCIS: Utah is also not going to be a very good state to get a lot of
data on that point.

DR. SUAREZ: Here again is an interesting intersection with the standards
subcommittee. Certainly this is the focus of our standards subcommittee,
particularly as we look beyond the HIPAA standards all that. As a person that
worked 25 years or so in one of the first implementations of an electronic
birth certificate where we would have actually diskettes, if you remember
diskettes, on a 3.5 instead of a big 5.25.

We used to have actually the software in there sent to the hospital. The
hospital is downloading a PC, IBM PC junior machine with diskettes, and
connecting the modem to the Department of Health to submit the data that they
had entered manually from the medical record of the mother and the baby. I
think we have come a long way, but I think the key point here is the fear that
exists, because it’s fear I think, of loosing control over the data and the
workflow from vital statistics.

I think it’s something that we need to figure out how to address. The
reality is this is a standard for exchanging information. Not all the data is
on the medical record. Some data needs to be added and expanded. There’s an
opportunity to, using the standard, allow for that to happen. This is not
replacing the primary concepts of all the functions of a register in a state.
This is primarily finding an improved way to exchange data that is more
accurate from the electronic medical record, expanded with additional data that
is added to it based on the state needs and all the other functions continue.

We at JPHIT, the joint public health informatic taskforce, which includes
NAPHSIS and CSC and others, we had debated this, and we provide input into the
public health sub workgroup on the policy committee on meaningful use. There’s
been a strong debate about how much to recommend, for meaningful use stage
three for example, on adopting the standards for electronic birth record

I had been pushing hard, but there’s been a lot of resistance from NAPHSIS
because they don’t want to see that happen, to be adopted under meaningful use
stage three. I think it’s going to be necessary to continue the dialogue to try
to emphasize the reality that this is not replacing any function of
responsibility. This is trying to standardize the method for exchanging the
data and enhancing it.

MS. GREENBERG: You might want to respond, but obviously we can’t have a
robust discussion here on this. I do think that Michelle pointed to an
important point, an important fact, and that is that like anything, any
standards, they need to be tested. In defense of, which I’m not here to defend
anybody, I’m trying to be neutral here, but in defense of NAPHSIS members
they’re getting increasingly receptive to the piloting and demonstrating. They
want that to happen.

It’s like so many things we heard about this morning in a resource
constrained environment, will we really be able to do the kind of pilot testing
that will demonstrate what we believe? Again, it’s a hypothesis, as you said
Delton. We wanted the committee to know about this work, and it raises both the
real potential of the convergence and the barriers, risks, and challenges. We
hope that that would lead to a more robust discussion in the committee about
this convergence topic. The problem that I’ll let the chair solve is that it’s
already 3:15.

DR. GREEN: I’d like to solve that by saying can you guys hold on to some
other time for your last comments?

DR. COHEN: Sure.

Agenda Item: Convergence

DR. GREEN: Let’s do move it to move to this convergence item on the agenda.
It’s a great example. We had to set our agenda last time, and we put it off. As
you noted in the annotate agenda, we put it back on, thanks to Debbie, to give
particularly the co-chairs but everyone a chance to articulate their thinking
or to surface any issues, offer any clarifications about this theme of
convergence. Let’s take a few minutes to do that. I wish to observe that our
work seems to be defining what convergence means. What we see as a theme seems
to already be being acted upon with considerable consistency and it keeps
resurfacing. The floor is open for comments. Paul?

DR. TANG: I think we’re definitely on the right track. I think we had a lot
of discussion even today, or offering from the presenters, particularly NCHS
and CMS, of how open they are– really, today, it’s been a good day– and the
desire to converge for all the right reasons is there. I think we still can
offer a framework for convergence, some of which we talked about last time with
the population hearing, and some of my comments about all right it’s fine to
converge, but let’s not converge on yesterday’s data, yesterday’s methods, or
even yesterday’s statistics in some cases. All those had built in assumptions
like all they had were claims, or all they had were what people would
separately enter. Why don’t we look at a different way of getting data and
actually probably getting better data?

The reason for death is a good example. Actually, the person who is
recording is not your most reliable source, and it would be nice if someone
really figured out what we were dying of. That’s the ultimate outcome. The
smoking this is the other thing where if we get the wrong thing, we’re going to
act or not act on wrong information, the difference between what’s the
perception of the people who can change something and what they’re being fed.
That applies all the way down to the community level.

In some sense, I guess one of my pleas, and I was going to make that
tomorrow, is that we focus on the new theme, which is community, which is
really different from population. I think we’ve really focused on population,
this amorphous mass of which we only take the mean, which doesn’t represent any
of us. We’ve been so focused in the past year, let’s say, on community, which
is made of people, the wonderful definition we have is made up of real people
living in some kind of authentic community who have issues they want to solve.
They need to be informed by data about them in their community.

No matter how much we open ourselves– it isn’t about that. Everybody’s so
energized and motivated to converge. Let’s just not converge on the wrong
elephant. I think the goal, like you say Marjorie, we’re pretty good at
identifying the new vision and being out ahead of it. Now I think, first of all
we don’t have the threat of being out ahead of something. Really the time being
called for is now, but our group has to put together a vision for what is the
problem to solve that applies to health data, it applies to open government.
That’s the crying need. That I think would be a wonderful charge for this
committee, for the diversity that sits on it, to figure out what “it”
is, what is the new calling card, what’s the problem to solve, and what’s the
appropriate data from the appropriate place in a more real time way that we
need to go gather?

MS. MILAM: That’s precisely the question for population health. We have a
slide on convergence that Bruce and I put together ahead of time. Let me just
jump in. We have convergence like Paul’s talking about at a variety of levels.
Convergence on this committee is really driven by HIT. Convergence happening
across the country, we just learned at our roundtable what’s happening in all
of these interesting communities, how they’re solving problems, how privacy and
stewardship interplay, how states are looking at issues, how individual
researchers are looking– it’s the same sort of convergence we’re experiencing
on this committee.

It’s interesting to see how we have access to more data. The question is do
we need more data, but then how is this data comparable? How can we link it?
That brings up the standards issue. How do we figure out how to make this data
more interoperable? When we do, what privacy issues are raise? How do we do it
in a way such that it’s something that people expect, that they’re not
surprised, that it’s secure, that it’s actually meeting people’s needs and it’s
useful in the communities where they live, and actually improves health? Our
work is really reflecting what’s happening on a national level and what we
planned on doing when we joined with privacy at 3:25, I guess, is to figure out
what the next question is. How can we support this? How do we not get in the
way? How do we take what we’ve heard in terms of modernizing the health
statistics vision into something very actionable for us that moves it forward?

DR. COHEN: Just to continue, I think we all are aligning in where we want to
go. Where can NCVHS make a contribution in this discussion? It’s really
gratifying to hear that the federal government is adopting the same attitude.
How can– what is the appropriate role for us to recommend for the federal
government, because that’s where we can have influence to move forward?

I think the notion that the feds can act as a facilitator in these
conversations around developing standards and guidelines to connect a lot of
activity that’s already out there– because I think what’s missing is really
that glue. I think you’re right; we need to better create the framework to
connect all of these activities together so that we get– I think Larry said it
really well, enable communities to become health learning systems. That’s where
I think we can make a difference. I’m excited.

DR. SUAREZ: It’s interesting how much we have used the word
“convergence” lately. I do feel that there is more than just one type
of convergence. There are different levels and different purposes and different
ways of achieving convergence. I think it’s probably going to be helpful to
identify some of those concrete areas where we can pursue some of this
convergence. Certainly we have identified a number of those in the relationship
of standards, to population, to privacy, and to all those areas that have
demonstrated the unique opportunity for convergence. I think we just need to
articulate more specifically what are those instances where we want to pursue
this convergence. I don’t think we can just come up with one convergence of
convergences. We need to find concrete examples of where these apply.

DR. FRANCIS: I really think the whole idea here is just like we were talking
about within the department and across other areas of government. Seeing where
we have expertise and interests that compliment one another is what we’re
really trying to do here. If standards has a question about claims attachment
that implicates minimum-necessary, somebody points a little: “Oh Linda and
Leslie, doesn’t privacy, confidentiality, and security need to be thinking
about that?”, that we have channels that are always open that let us do

Just to that end, part of why we tried to put together some of these slides
that showed you what we were actually thinking about where we were going to go
from the roundtable was so that we’d hear things like we heard from Vickie, and
I’m sure we will be hearing more, about here’s a great case study. I don’t
think we can say it’s got to be this way. I think what we have to do is keep
having those places and channels and ways of dealing with one another so that
we feed each other.

DR. CARR: This is something I put together for tomorrow, but it might be
relevant here. I think we need to also think about what altitude we want to be
at. We can sometimes, and sometimes have to be, very granular. Sometimes we’re
granular. What we’re talking about now is the convergence. Actually, even
without us talking about it, I think as Larry was saying we’re sort of
observing it, the convergence that we saw today, and the overlap and the theme.

I agree that’s happening, but then I also heard the word “glue”,
and it made me think about this slide, which I realize is hard to read, but
I’ll explain it to you. This came out of– on the way down, I read all the
brochures I took out of the Datapalooza. I thought why is it so hard to get my
head around what we’re trying to accomplish with liberated data, et cetera? It
brought me back to this sustainability model, which is not mine. If I could
read the fine print, I would say it. The model as it was originally written
talks about the elements that you need for sustainable change. It’s vision,
capability, incentive, resources, action plans, methods, agenda, and review and
feedback. When I think about what goes on– well, so I tried to say what do
those things mean?

If you’ll see the questions on the top are the three key ones, what are we
trying to achieve, who will pay for it, and who is the customer? I think we
struggled with that a lot. Then after that, what are the capabilities? You need
IT, software, clinicians, informaticians. What are the resources? You need
usable data. It might be old data. It might be newly collected data. You need
the technology with the data. Then what are the agenda methods, and to me
that’s like the privacy, data integrity. Then we heard today that if you just
build a standalone app on how you count your steps and it doesn’t feed into
your EHR or anything like that, it doesn’t have it.

As you go down this list, as you’re missing each thing, if you don’t have
vision, you have confusion. If you don’t have capability, you have anxiety, et
cetera. If you don’t have incentive, you have resistance, which we just heard
from this EHR vital statistics. This will be more for tomorrow as we talk about
the workgroup, but it makes me think about the fact of what does NCVHS do that
is ahead of the curve? I almost feel like we saw convergence today.

I think we should continue, and I agree with the idea about community, but I
think we also need to be able to think one level higher that sustainability is
the key thing for all of these. We have wonderful community initiatives, but
they don’t have the technology. We saw a million, trillion apps at Datapalooza,
but they don’t have any funding. We saw a million VC people, money in search of
a reason. I think we really need take this explosion of things and think about
what is the finish line, and what do we need to get us there. That’s my two

MS. KLOSS: It is Harvard Business Review, “What Happens When Change
Comes Undone”.

MR. SOONTHORNSIMA: I think a big question around convergence, and I’m
beginning to think there are different types of convergence, and I may have
heard some of my colleagues talk about that before, so I’ll just break it down
to simplify it a little bit better. I like what Justine showed up there. One is
when you think of one type of convergence is the business model– call it
health insurance, healthcare, delivery, and how we pay for healthcare– that
business model is shifting.

That’s one convergence to think about. We’re talking about a different type
of technology or standards convergence. That’s another set, but they’re not
necessarily aligned. I’m giving two very specific examples. We spent a day and
a half yesterday talking about all the SDO activities and how there’s begun
this shift around focusing on a business process as a context to guide these
standards and not having these standards happen independently, if you will, and
then offering rules or whatnot.

You think about that, these are the convergence-type activities around the
business model of healthcare. Then the needs around– what we heard today about
the work that Linda, Leslie, and the team have been focusing on is really the
needs for information at the local level, at the community level, and that’s
different types of convergence there. I think it’s impractical, at this point
anyway, to be thinking convergence is a big über trend. We have to
acknowledge these different paths are taking shape, and how we can help
facilitate that, I think that’s really our goal in the meantime.

DR. GREEN: I’m not sure who was first over here. Linda?

MS. KLOSS: It seems to me that with past work that we’ve done, measures that
matter, that the starting point for thinking about this needs to be at the
personal patient and then building up to the community level. Because so much
of what we do– even the diagram of the learning healthcare system seems to me
to be institutional in its grounding. To take that and turn it on its ear and
look at what kind of information convergence really directly supports people
and their needs and new ways of advancing health would be the way to break with
the past. We have to get to business models, but to start there pulls us back
to where we’ve always been.

MS. GOSS: I’ve really been enjoying the comments so far. There are a lot
from my list that I had made up. I’m struggling with the governance aspect that
needs to happen to achieve the targeted efforts that Ob was speaking about
while we need to plan for what we don’t know yet, because we’re in a big
experiment right now, and how we think not just the patient in their community
but their community up to their region, up to the state, and think of us in a
world, and the global dynamics of the data that we really need to get at. That
seems a little bit overwhelming to me, but I think we would be doing a service
if we could break it down into targeted actions that were driven by a series of
principles, which I think everybody has already espoused here as we’ve gone
around the room.

I also heard one comment that didn’t quite come out, which is making sure we
effectively define what convergence is, and using that as the capstone with the
guiding principles of what we want to propose that the federal government would
take on as spearheading regulations and directions and supporting through
various initiatives through outreach and education, because there’s such a lack
of understanding at the patient level. I agree with you on a start, Linda, with
that kind of view, but they want to just be helped. I’m struggling with really
what are the tactics that come out of all of this?

DR. FRANCIS: I think it’s really important for us to distinguish between
convergence on policy and convergence among us as workers. I thought that’s
what we were talking about, us as committee workers not–

DR. TANG: Doesn’t form follow function?

DR. FRANCIS: Topically, we have to all agree if we’re going to come up with
recommendations, but I thought it was about how the committee works.

DR. SUAREZ: There are different levels–

DR. FRANCIS: Anyway, it’s important to distinguish this, too.

DR. GREEN: It’s much broader than that–

MS. GOSS: Keep in mind, I wasn’t here when you guys all started that

MS. MILAM: There’s a schematic, I think, from the 2002 work on the health
statistics vision that might help us that shows individual and community and
population health. I think it might be in the “community as a learning
health system” report. I think it might help us get it straightened out in
our minds.

DR. GREEN: I’m going to pull this to a close here– Walter?

DR. SUAREZ: I just want to say I do like the discussion, certainly this is a
great discussion, but I’m somewhat concerned about focusing action on
convergence, making convergence an activity. Convergence is in my mind the
result of the actions and discussions that we have. We should thrive towards
convergence on things, but we shouldn’t “do” convergence. What I’m
saying is I don’t know that we should create a project called
“convergence”. We need to think about the opportunities of the
activities that we’re doing and the priority that we have and find
opportunities for convergence but not necessarily create a project around

DR. GREEN: Okay, this conversation is about to spiral out of usefulness. I’m
going to surprise Debbie down there and ask her for her help. What I think we
will do next, unless someone rebels right now, is I’m going to ask Debbie to
retrieve the transcripts from the last 20 minutes of discussion about this, and
tease out of it each of the ideas, which were disparate– they were actually
divergent– about convergence and let’s grab these.

Let’s kick it to a meeting of the Executive Subcommittee and take Alix’s
request seriously about let’s start defining what this is going to mean. I hear
your last words about let’s not make it a project, but it’s a theme. Debbie,
can you help us with that? We will start cleaning this up between now and later
in the summer. I predict that before long Justine will have a revised and
approved slide. That will help us. In your own minds, I ask you to think about
this: convergent with what? And why? What’s the problem that we either want to
avoid or want to solve by simply– we’ll get there, but we’re not ready to
launch new activity. We just agreed unanimously that we need to sort this out
more before we jump into it, so we will. I think we better get to the
subcommittees. I’ve come to really enjoy this moment in the meeting when the
subcommittee co-chairs, it becomes their problem to get back on the engine.
Where is everyone meeting?

MS. JACKSON: I will give you some logistics as we are converging and going
through our various plots. My little two cents is I had no idea how these
topics and issues would converge so beautifully from the beginning of this
morning to all the way through. You’re feeling it. You’re sensing it. You’re
moving on it, but you can’t put your finger on it even though you’re trying to
define what it is you’re trying to do with it. I do appreciate everyone’s
comments and the speakers, the HHS presenters, and all the staff who made this

(Discussion of subcommittee breakout logistics)

(Whereupon, the meeting was adjourned.)