[This Transcript is Unedited]

Department of Health and Human Services

National Committee on Vital and Health Statistics

Full Committee Meeting

February 9, 2011

St. Regis Hotel
923 16th Street, N.W.
Washington, D.C. 20006

Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030
(703) 266 8402


P R O C E E D I N G S (9:02 a.m.)

Agenda Item: Call to Order, Welcome, Review of Agenda

DR. CARR: I will call this meeting of the National Committee on Vital and
Health Statistics to order. Welcome, everyone, and I would like to start by
introductions going around the room.

I am Justine Carr, Steward Health Care System, chair of the committee, and
no conflicts.

MR. SCANLON: Good morning, everyone. Jim Scanlon, executive director of the
committee and deputy assistant secretary for planning and evaluation at HHS.

DR. STEINWACHS: Don Steinwachs, Johns Hopkins University, member of the
committee, no conflicts.

MS. MILAM: Sallie Milam, West Virginia Health Care Authority, member of the
committee, no conflicts.

MR. LAND: Garland Land, member of the committee, no conflicts.

DR. TANG: Paul Tang, Palo Alto Medical Foundation, member of the committee,
no conflicts.

DR. MIDDLETON: Blackford Middleton, Partners Healthcare, member of the
committee, no conflicts.

DR. HORNBROOK: Mark Hornbrook, Kaiser Permanente, member of the committee,
no conflicts.

DR. FITZMAURICE: Michael Fitzmaurice, Agency for Healthcare Research and
Quality, liaison to the full committee.

MS. PRITTS: Joy Pritts, chief pharmacy officer, ONC, presenting today.

DR. FRIEDMAN: Charles Friedman, chief scientific officer, ONC, liaison to
the committee.

DR. EDWARDS: Brenda Edwards, NIH liaison.

DR. WARREN: Judy Warren, University of Kansas School of Nursing, member of
the committee, no conflicts.

DR. CHANDERRAJ: Raj Chanderraj, newly appointed member, no conflicts.

DR. CARR: And welcome, Raj. Raj is a visitor today, and when we’ll be
finished with the paperwork, we’ll count you as an official voting member.

DR. OVERHAGE: Good morning. Marc Overhage, Regenstrief Institute, no

DR. FRANCIS: Leslie Francis, member of the committee, University of Utah, no

MS. GREENBERG: Marjorie Greenberg, National Center for Health Statistics,
CDC, and executive secretary of the committee.

(Introduction of staff and guests)

DR. CARR: Do we have anyone on the phone?

MS. HORLICK (via telcon): This is Gail Horlick, CDC Atlanta, staff to the
Subcommittee on Privacy, Confidentiality and Security.

DR. CARR: Do we have Lorraine on the phone?

PARTICIPANT: She sent her apologies.

DR. CARR: All right. Well, then, we’ll turn this over to Jim for an update
from the Department.

Agenda Item: Update from the Department

MR. SCANLON: Thank you, Justine.

I will update the committee on a couple of things. I will start with the
policy and strategy levels, some strategic plans and other documents that set
the framework for HHS goals and objectives. I will bring everyone up to date on
our budget situation, which still is kind of murky, kind of working on 3 years
at once. Then I will address some other initiatives we are planning.

I left at your place the newest HHS Strategic Plan. This covers the period
from now through 2015, so this is really the latest version of our plan. I hope
everyone has this. You can see the plan in all its splendor on the hhs.gov
website, which links to a lot of other things.

I wanted to talk a little bit about what the goals are. You will see
objectives under each of the goals. Basically, these major goals are the major
states that HHS is trying to accomplish, and the objectives you will see are
how we do it programmatically and administratively. But again, you will see
that virtually every one of these involves the work of the committee and the
interests of the committee, both the data and statistical side for policy
research and decision-making and evaluation, as well as the health IT side for
promoting transformations in health care. You will see that much of the
activities and programs of HHS can be grouped under one or another of these
various goals.

I will not go through the objectives because you can see those later. But in
terms of the overall goals, the first is transforming health care. This is
really focused on health systems change, the Affordable Care Act, and a number
of other demonstrations, health systems delivery initiatives, payment coverage
issues that we are trying to expand and improve through HHS programs. You will
see one of the objectives there is to promote the adoption and use, and the
meaningful use, of health information technology.

The second goal — HHS is one of the largest scientific agencies in the
federal government and probably the largest funder of biomedical research in
the world — so here the goal is to advance scientific knowledge and
information, and again, not just the basic discovery side of this but to
actually try to move the discovery and the fruits of scientific research
through the regulatory pathway and into the care and to the bedside, into the
doctors’ offices as much as we can.

We have a big prevention focus, obviously, in HHS, so the third goal has to
do with advancing the health, safety, and wellbeing of the American people.
This focuses on all of our preventive efforts, the areas of CDC and others, as
well as secondary prevention and risk behavior improvement, and so on. Again,
there are a number of objectives under this area as well.

We have a big initiative focused on increasing the efficiency of our
programs as well as their transparency and accountability. Under that goal you
will see objective C. Specifically, it says “to use HHS data to improve
the health and wellbeing of the American people.” We have a number of
initiatives in that area. I will talk a little bit more about those shortly.

Then finally, the goal is to strengthen the nation’s health and human
services infrastructure and work force. Here we are looking at some workforce
issues in health care, primary care particularly, looking at distribution as
well as need and looking at the public health work force as well and at some
basic infrastructure at the state and community level.

I will not go into much more detail, but you can see that is sort of the
overall framework for HHS activities and operations.

Related, now, we have a number of other strategic plans and plans in
specific areas, and they all align with the strategic plan. But let me mention
a few of those. Some of them you are very familiar with.

Healthy People 2020 we have just published earlier this month. As you
know, those are national health objectives for the nation. They include both
objectives, base lines, and targets, which is unusual, to actually set a target
for improvement by the time we hit 2020.

We have just issued last month a tobacco control strategy at a fairly high
level. It looks at all of the efforts that HHS is engaged in, from regulation
to prevention, and so on, to reduce cigarette smoking in the United States.

We published last month a strategy for HIV as well, both prevention and

We have in the works, as required by the Affordable Care Act, a national
prevention and promotion strategy, which you can find on our website. There is
an early draft of what that is. It was open for public comment. Again, that
will be an attempt to pull together a national prevention and promotion plan
and strategy.

On the open government side, let me say a few things. We published our open
government plan last year. This is an administration initiative to basically
make the operations of government agencies much more transparent and
accountable. A big part of this is to make data about agency operations and
data in general more transparent.

One of the goals here was to publish on a website called data.gov, virtually
all of the data sets and the tools that HHS, well, that all federal agencies
have. Again, the idea is to make them available, push them out, make them
easily accessible where we could, with the hope and the expectation that folks
will be able to pick up the data, use the data to improve health and to improve
human services as well as normal research and public health surveillance, and
so on.

In HHS we have kind of been a leader in all of this. We have published since
last May probably over 200 data sets and tools on data.gov. We have a number of
others in the works. A couple of examples. Hospital Compare I think you’re all
familiar with from the CNS world. We are pushing those on the data.gov set as

It turns out that folks who know the programs throughout the country, they
know the website at CMS or NCHS to go to, but the data.gov website is a whole
new set of customers, including application developers, Googles and Microsofts
and others, who actually are looking for the data that they can — their job, I
think, and their focus and their business goal, obviously, is to take data and
develop applications for computers, for iPads, for iPhones, and so on. They
have already taken a number of our applications at the county level, for
example, county data that we have and have published, and have already made
various kinds of applications for it.

I think you met Todd Park at our previous meeting. Todd is our chief
technology officer. Todd comes from the industry. He actually, you will
remember, developed athenahealth. So he is quite comfortable with the whole
venture capital, trying, failing, and hopefully succeeding. Todd has a good
relationship with the apps developers.

The first phase of our data.gov data push, at any rate, is to put as much
data as we can out there, obviously in a matter that protects privacy. We would
not put identifiable information up. If anything, it would be de identified.
But the data sets so far are not like that even. They are for use by the
research, the public health, the human services community and apps developers
more generally. The whole idea again is to use the data, of which we have
considerable stores, as you know, get it in a manner where it’s available to
consumers and others for actually improving health or engaging in community
health discussions, things like that.

I told you about the CMS Dashboard, which is basically using the claims data
and the payment data at CMS to provide local area patterns of utilization and
spending. In addition, we will be having before long CMS claims data sets. Let
me explain what these are. These are not linked data, these are called slim
files, so much of the information is taken out of the claims, the data set that
would identify an individual. They would be published separately for hospital
discharges and for doctor visits and for different provider visits as well.

A third part of these larger initiatives for data.gov we’ve announced
already, our Community Health Data Initiative, which was launched in January,
and again, that is where we try to post virtually all of the community-level
and county-level health indicators and data that we have. Again, the idea is
that others would take that data, convert it — I would say that it is less
consumer oriented than it is developer oriented, at this point. The idea was to
get the data out there, get it in the hands of apps developers, analysts, and
researchers, who could then turn the data into information almost at a consumer
and a planning level.

Let me turn now to our budget situation. We are well into fiscal year 2011,
as you know. No federal agencies have an actual full-year budget. We have a
continuing resolution until March, and I think it’s anyone’s guess what will
happen next. I think continued full-year funding at some level is assured, but
I think no one has an idea of what that might be. At any rate, all of the
agencies continue to operate more or less at the level they operated at last
year. It is hard to begin anything new, obviously, because anything could
happen down the line, and I think we’re trying to preserve options and
flexibility for what might happen later in the year.

At the same time, the President will send up on Monday, Valentine’s Day, the
2012 budget. Congress will consider that. 2012 would begin in October. Again, a
lot of work on developing that budget. Some agencies will be going up, some
programs will be going up, but many will be going down. You heard the President
announce a freeze, basically, on overall spending. I wish I could tell you more
about what is in that. We’ve made an effort, I will say, to protect some of our
basic health statistics programs so that, much like the economic statistics,
you sort of do know where you’re headed — are things getting better or worse?
— so I think in most cases we’ve made an attempt to protect at least current
spending levels for our basic population of statistics programs. But we will
see what happens when this actually goes up to the Hill.

At the same time, as I have indicated to the committee before, we are
always working on three budget years at a federal agency. We are already
beginning to look at the 2013 budget. Probably a fairly austere budget, but
again, we are looking at planning for that as well.

Maybe I will stop there, Justine, and see if there are any questions.

DR. CARR: Thanks, Jim. That’s great.

Yesterday — we will hear more about it later — we had a terrific array of
presentations from community data. Actually, Todd was here early on and has
invited everyone, I think, to the June 9 event at the IOM, I guess everyone in
the room.

But I think one of the things that we heard, that came through loud and
clear from the community groups, is the variability of their infrastructure in
getting and aggregating and manipulating data. At the same time, we saw very
excellent examples of the work that Todd has been doing in the Sonoma County
dashboard that has just simple temperature indicators, red to green, and where
things were.

Some of the discussion at the end of the day was about creating data sets,
like in Hospital Compare to a certain extent, that are uniform across the board
with appropriate benchmarks that have become a starting point for some of the

I would like to open up for any questions for Jim.

The other thing that Todd mentioned yesterday was that the data is also in a
site that is manipulatable by users, and that was a new addition, just launched
in January.


DR. CARR: Leslie?

DR. FRANCIS: Users mentioned that they would love to get some kind of
newsletter about what all the new stuff is, because they find it hard to keep
up, they are so oppressed by everything that’s here.

MR. SCANLON: We’re going to reach a plateau, believe me. We’re way ahead at
HHS on these.

Actually, that has come up previously, and we are trying to think of how —
did Todd talk about healthdata.gov, that sort of plan?

DR. CARR: Yes.

MR. SCANLON: Within data.gov, which is all the federal agencies, you can get
aviation, you can get waiting times for flights, and you get weather
information. It’s all the federal agency information.

What we planned to do was to have a sub-web page within overall data.gov
where we have just the health-related data we call healthdata.gov. So it would
be HHS data as well as EPA data, some other agency health data as well. Our
focus now is to be sure that we get our best data sets and tools and some, Todd
calls them APIs — Paul, you know what that is — but it helps run your
application. It is sort of a bridge. So we are looking at what we would put
there first.

But I think you’re right. It is a little easier for aficionados to use, and
developers, than it is for communities to use, unless you have analytic skill
and some statistical background. We will have to work on that.

We are also taking feedback and we’re looking at it, so if folks have ideas
about — they think a data set may be portrayed differently, or another data
set or some improvements or an application or a tool — we have a lot of
mapping tools, as you could imagine, where you can put in your ZIP code and it
will take you to information about your area, whatever we have. So we will be
looking, at least, Justine, at what folks give us in terms of feedback.

But you’re right, there is not that intermediate step of a help desk where
we could actually help, because you’re right, at a community, even a county
level or a municipal health department level, there is not a lot of public
health infrastructure necessarily there, particularly at this time, to help
with this.

DR. CARR: I think we could take all of the twenty-somethings that are
unemployed at the moment and live with their parents and hook them up, and it
would be a jobs program. They could solve anything.

MR. SCANLON: That’s right. All right, this summer.

PARTICIPANT: Give them free internships.

MR. SCANLON: That would be nice


DR. CARR: I’m serious. Think of it. No training required.

With that, two things. Walter just joined us. Do you want to introduce
yourself? And then Lorraine is on the phone with the CMS update.

DR. SUAREZ: Thank you, Justine.

Good morning, everyone. I am Walter Suarez with Kaiser Permanente. I am a
member of the committee, co chair of the Standards Subcommittee, and I don’t
have any conflicts.

DR. CARR: Lorraine?

MS. DOO (via telcon): Good morning, everyone. This is Lorraine Doo with
OESS. I am lead staff to the committee and representing CMS and OESS.

DR. CARR: Go ahead with your presentation.

MS. DOO: Oh, terrific. There are not slides, so you’ll actually just have to
listen to my voice. Hopefully, it is coming through clearly. I am holding the

DR. CARR: We’re good.

MS. DOO: Something that probably you all are waiting with bated breath for
is that we are working on the interim final rule regulations for the operating
rules for eligibility and claims data as well as the health plan identifier.
Those actually are scheduled to go into the clearance process tomorrow. That
means that they start wending their way through CMS and HHS review before they
go to the Office for Management and Budget for their final approval. The dates
that we had targeted of June 24 for the operating rule regulation to be
published and late July for the health plan identifier rule to be published are
both on target. So that is beginning its work.

We also received application from the three entities applying to be
authoring entities for operating rules for electronic funds transfer and
electronic remittance advice. Those were X12, CAQH/CORE in concert with NACHA,
and also NCPDP. So we are going through that review, and we will be obviously
coordinating with the Standards Subcommittee, because they have to do the
ultimate analysis and recommendations. But that work is under way. The
submissions were due on January 31, so we did receive all of them on time. So
that analysis is deeply under way.

From the standpoint of 5010 — and I am going to give you a couple of
updates on this, and when I use the words “Medicare” or
“CMS,” there is a differentiation, and it is very clear. When I talk
about what Medicare is doing with respect to 5010 or ICD-10, it is specifically
on Medicare as a health plan, as any other entity in the industry that has to
comply with the regulation. When I mention CMS, I am talking about CMS as an
industry ally, if you will, with overarching responsibility for communicating
across industry, whether it is related to Medicare, Medicaid, and every private
health plan and provider or clearinghouse. So there really is a

For Medicare, they have started doing their 5010 testing but not of the
errata, which were just announced last year. The testing of the transactions
with the errata program will actually start in April. So Medicare is doing its
version of 5010 straight testing and is talking about doing an industry-wide
testing day where everyone would just use version 5010 without any supplement
of 4010 information or 4010 version transactions.

We did this a couple of years ago for the national provider identifier. We
just had this day where everyone got to submit as if it were the implementation
date, so the errors really could be brought out and understood and worked as a
community, if you will. So there is conversation that has just begun related to
that kind of industry-wide, coordinated testing. But we don’t have a date for
that yet. The discussion literally started, I think, in the last 5 days.

From a CMS perspective on launching awareness campaigns, 5010 obviously is
quite well under way. There is a new campaign that will be starting on ICD-10
awareness. As you can imagine, and you have probably heard, the industry is
reeling with all of the requirements that have come up, whether it has been
through the Recovery Act, the EHR incentive program, 5010, ICD-10, wondering
what is going to be happening under health reform, what is happening with the
Office for Consumer Information and Insurance Oversight.

To get them on track with ICD-10, which is so critical to many of these
other initiatives, we are launching an ICD-10 campaign. That will be going out
in professional journals. There is a lot of listserv activity, all of the CMS
provider outreach listservs are being active, and the ICD-10 Coordination and
Maintenance Committee is continuing to do outreach on what the crosswalk is,
what the outcome of the meeting in September was in terms of that. They either
call it general equivalence mapping or the crosswalk. So there will be much
more information over the next couple of months related to that.

There will be, as we’ve talked about with our HIPAA report, survey work that
we will do, again on a much more ad hoc basis — it is very difficult to get
industry to tell you what the issues are, but we are going to make that effort
from a CMS perspective to see what the problems are and what kinds of delays
are happening and where they are happening so we can target additional outreach

On the EHR incentive program, some of you actually may belong to
associations that will be receiving today an announcement about a new listserv
specific to the program that will have more timely information about the
incentive program, how to apply, technical issues, where to go for help, and
just much more available information. It is going out to the partner
associations, who will then roll it out to all of their constituents and
encourage people to sign up. But people are also able to go — probably it will
start — the message will go out today. People would be able to go onto the CMS
website on the little EHR icon on the right-hand side of our front page and
also be able to sign up for that, because some of the feedback we’ve been
getting is while there is good information, they want more timely information
when something happens or if there is new information about what might be going
on with the application process.

I did get information this morning about the number of registrations that
have come in thus for, and it looks like for Medicare-eligible providers, there
are about 20,000 that are either active or in process, and it looks like 18,000
actually in fact have been successful registrations to participate.

In Medicaid, there are currently 777 active that are registered and ready to
start. For hospitals on the Medicaid side, there is actually only one. Medicare
hospitals, there are 23. These reports are going to be generated every week,
and I don’t know when this kind of information will be posted, but I am
assuming that they will begin to share this kind of thing on our website or to
do some of these communications to let people know that people have been able
to successfully register and that in fact some organizations may actually be
receiving payment. We will obviously be happy to share those once I get these
fully vetted with NCVHS if it is something that you’re interested in tracking.

Those are the items I had on my update. I am not certain if I have missed
anything or if there was anything else you wanted to know about what’s
happening here.

DR. CARR: Thanks, Lorraine.

Let me ask Mike Fitzmaurice.

DR. FITZMAURICE: Hi, Lorraine. This is Mike.

I have a question, and that is if we’re going to be moving from ICD-9 to
ICD-10, what is CMS doing about the DRGs that are grounded in ICD-9, the
quality measures that are grounded in ICD-9? There is diagnosis and then
there’s the hospital procedures, which is ICD-9 going to ICD-10. All of those
will have to be reconfigured, won’t they?

MS. DOO: To my understanding, the DRGs have been completed and are probably
on that ICD website, that that crosswalk has been done. When I last spoke with
Pat Brooks, actually — I think it is probably a month or more ago — we had
this question before from another meeting, and I had checked with her, and that
has been completed.

In terms of the quality measures, I can check with OCSQ, the Office for
Clinical Standards and Quality, to see if that also has been done or what the
schedule is for that, so I can do a follow-up.

DR. FITZMAURICE: Thank you, Lorraine.

MS. DOO: Sure.

DR. CARR: Any other questions? Raj?

DR. CHANDERRAJ: Thank you for the information.

The registration process for the incentive payment for the physicians is a
very commercial process, and they are insisting that the physicians themselves
do that rather than the staff do it. Has there been any change in that process?

MS. DOO: I have not heard that. It is helpful. I will, after today’s
meeting, go and speak with them. So the issue is that there is some requirement
that it be a physician versus a staff member, and is there some verification
that it is the physician in fact doing the work?


DR. CARR: Marjorie?

MS. GREENBERG: I just thought, in light of some of the activities that
Lorraine mentioned for basically payers, providers, et cetera, related to
ICD-10, I just wanted to share with you that the Public Health Data Standards
Consortium, which we talked about a little bit last week, executive committee
yesterday agreed on a similar type of plan to work with public health agencies
and others who are using the classification for encounter reporting and
statistical reporting and possibly discharge data, et cetera, on the transition
from ICD-9-CM to ICD-10-CM and 10-PCS, so it is something we might — I think
we have on our agenda to hear from them perhaps at the June meeting in any
event, so that is something they could report on.

DR. CARR: Yes, good idea.

MS. DOO: And I will follow up on this issue of the EHR registration and send
a note back that can be sent out to the committee.

MS. GREENBERG: Thank you.

DR. CARR: Actually, following on Mike’s question, is there a kind of
landscape of all of the things that are tethered to ICD-9, kind of an inventory
of where we want to be looking? Has anybody done that?

MS. DOO: There is one through what CMS has done in terms of all of the
changes that we have to do. There is actually a graphic that shows all of these
touch points and obviously the risks. It probably is very similar to what will
be done in other agencies.

I will get a copy of that and share it with you. It probably doesn’t itemize
the kinds of things that Mike mentioned that you might be thinking about. But
when you see it, you can also perhaps say, well, what about this and what about
that? We can see if it fits what you’re thinking of.

DR. CARR: I think that would be very helpful, and I think it would be
helpful to the public as well, because I think it is hard to grasp all of the
different things that in fact are tied to our ICD-9 system. So I think it’s a
good way to be thinking about it.

MS. DOO: Sure, and it’s a graphic, which you love.

DR. CARR: I love graphics.

MS. GREENBERG: We know that.


DR. CARR: All right. I think, then, seeing no more questions, thank you very
much for filling in.

Oh, I’m sorry. Walter? Pardon me.

DR. SUAREZ: Hi, Lorraine. Good morning. This is Walter.

I have a quick question. What has been the experience thus far — and I know
it’s only about a month and a half since the testing for 5010 started — but
what has been the experience thus far, from Medicare’s perspective, on the
implementation of 5010, of course at this point without the errata?

MS. DOO: I don’t have the detailed sheets of the issues that are popping up.
Certainly there are some. I don’t have that, but I know that there are weekly
meetings on Monday, for example, when they list what those are, and I can
probably get a copy of that and just give like an outline of them, of where the
particular problems are happening, because as you said, it’s only a month and a
half, so some of them are probably pretty high-level issues. But I would happy
to pull that, because I do get a copy of it.

DR. SUAREZ: Yes, I think that would be great. Thanks, Lorraine.

DR. CARR: Okay, thanks. Let’s now turn to ONC, and Chuck and Joy, you’re up

DR. FRIEDMAN: Thank you. Good morning, everyone. It is terrific to be here,
and I’m sorry I wasn’t able to join you yesterday.

I will be speaking about some aspects of what ONC has been doing that fall
primarily in my domain and areas related to my interests, and then Joy will
give a separate update on matters related to her domain of interest and

I am going to cover three specific topics. My first specific topic is a
general one. I am going to give you a few bullet points relating to progress in
different aspects of ONC’s broad agenda. I will then briefly report on two
workshops we held recently on topics of interest, and then to the matter much
on everybody’s mind and in the forefront of our attention, the recent PCAST
health IT report, and I will say a few words about a workgroup that we have
formed specifically to consider the findings and recommendations of the PCAST

Here is my general program update. There are some late-breaking statistics
here that I will share with you. We do have the 2010 data from the NAMCS
supplement on office-based physician adoption of health IT. We have broken it
out for primary care physicians. If you break it out for primary care
physicians and look at those who have adopted a basic EHR, these are a very
small number of basic but important functionalities, by no means what is
required for meaningful use but indicative of having a kind of foundational
system in place. You will see that among primary care physicians from the NAMCS
data, the proportion with a basic EHR by a consistent definition thereof has
increased from 19.6 to 29.6 percent from 2008 to 2010.

From the same survey, we have data on intent to be part of the meaningful
use program by seeking to achieve meaningful use and apply for the incentive
payments that are forthcoming to those who achieve it. From these data, 81
percent of reporting hospitals indicated that they would be striving to achieve
meaningful use, and 41 percent of office-based physicians. Of those hospitals,
two-thirds said that they would seek to achieve meaningful use either in 2011
or 2012. Four-fifths of the practices saying that they would seek to achieve
meaningful use said that they were going to try to attain that this year; that
is, 2011.

Moving to the next bullet, the number of certified EHR products continues to
grow. I actually check the website with the list of products just about every
day to watch the growth, and I have the URL here for you. It is readily
accessible from the main Health IT HHS website, the URL, which I will show you
at the end of my remarks. As of last night, the total was 350 certified
products, 250 on the ambulatory side and 100 on the acute care inpatient side.

The next bullet goes to the number of professionals who have enrolled
formally with our Regional Extension Center program to work with them to move
toward meaningful use. As I think you know, we have funded 62 extension
centers, which pretty much geographically cover the entire country. The latest
data we have show that about 38,000 providers have entered into formal
arrangements with the extension centers.

Finally, with regard to our workforce program, this too is growing very
rapidly. In our community college consortium program with 84 colleges
participating, we now have about 3,400 students currently enrolled in these
6 month programs. A few have already graduated from some of these 6-month
programs, but the majority of the first cohort are going to graduate in
February or March, and then new cohorts will begin. We expect this program to
have enrolled about 7,500 students before the end of the year. We have 645
trainees enrolled in 1-or-2-year university programs under our university-based
training program.

Let me just stop here and see if there are any questions about this. Yes,

DR. FRANCIS: Are there any breakdowns by types of primary care providers?
For example, are pediatricians getting left behind and internists taking much
more advantage of this?

DR. FRIEDMAN: The 2010 data, to the best of my knowledge, Leslie, is just
in, and the survey itself is publicly available on our website. But we would
have to look at the level of granularity. I don’t recall it regarding
specialty. I suspect within primary care the different primary care specialties
are broken down. Those analyses obviously can be easily done, but I don’t have
those statistics right now. I’ll past that request along. I’m sure that is
something we are going to do.

DR. CARR: Walter, then Marjorie.

DR. SUAREZ: Hi, Chuck.

I am somewhat surprised with the second bullet. If I am reading correctly,
60 percent of office-based physicians are not going to intend to reach clinical
use through the program, according to the survey, of course — this is survey
data — so is that the right number there? When you say 41 percent of
office-based physicians express their intent to reach clinical use, that means
that the other 60 percent are not expressing their intent.

DR. FRIEDMAN: I would say at this moment they have not expressed such an
intent. I don’t think that necessarily means they are saying they are never
going to do it. It means they have not expressed a positive affirmative intent
at this time. I think there is a subtle but important difference in that


MS. PRITTS: I am not familiar with this survey, but do you know if the
question was asked just of people who were eligible, or is it of all, all
primary care because not all physicians are eligible.

DR. FRIEDMAN: This is everybody in the survey, not just primary care.

MS. PRITTS: Right. But of the office-based physicians, is the question asked
just to office-based physicians who are eligible for the incentive payments or
for all office-based physicians?

DR. FRIEDMAN: I obviously don’t know the answer to that question.

DR. SUAREZ: That could be just an artifact of it.


MS. GREENBERG: And we can find that out.

Can you define a little more what would make someone not eligible?

DR. FRIEDMAN: What would make someone not eligible for the incentives? My
understanding is that all physicians are eligible professionals.

DR. SUAREZ: If they didn’t see Medicare or Medicaid populations —

DR. FRIEDMAN: They could choose not to apply because the incentive that they
would receive because of the proportion of Medicare and Medicaid patients they
have is low, but that doesn’t mean they are not eligible.

MS. GREENBERG: All right.

I want to get down to the last dot point there, because as Justine
mentioned, during yesterday’s workshop, which — actually, almost the entire
committee was there, so I thank you all for your participation and to those who
set it up. It was really an exciting day, and you will be hearing more about
that. But the need for technical assistance at the health department level, at
the community level — we primarily were hearing from communities and local
people yesterday — was tremendous for using information, for disseminating
information, for analyzing information.

I wondered to what extent these programs — this came up — through the
extension center and the training programs that you’re funding are directed
towards use of people in local health departments, people using population
health data, as opposed to HIT in clinical environments.

DR. FRIEDMAN: A great question, Marjorie.

I can tell you that specifically with regard to the university-based
training program, we encouraged through the funding opportunity announcement
applicants to specify training tracks for public health, and actually we set as
a target that 25 percent of the training slots at a minimum would be targeted
for folks to either come from or return to physicians supporting public health
work in public health agencies or other public health organizations. We’ve met
that goal in terms of the number of training slots available.

Whether we will, over the lifetime of the program, which expects to train
about 1,800 students, actually recruit at least 25 percent into these slots, I
don’t know, but there are categorical training opportunities for public health
roles and public health professionals in this program.

MS. GREENBERG: One of the issues that came up was sort of on-the-job
training or short-term training, the people who cannot actually be full-time
students and who are not necessarily going for the doctorate level but who are
working in the vineyards here. I don’t know the extent to which the extension
programs also provide some of that or if it is primarily just university based.

DR. FRIEDMAN: It’s a many-part question.

First of all, most of these programs, not all of them, are offered through
distance-learning modes. So they are very amendable to people who are working
and cannot leave wherever they are to go wherever the training is physically

Second, with regard to the community college program, we have, through a
separately funded program, developed a very extensive set of educational
materials, 20 curriculum components, each one roughly corresponding to a
3-credit-hour course. Each component is also divided into units, and each unit
is a standalone piece of educational content.

When these materials go public, and we expect that they’re going to go
public in June, they will be available in this atomizable form for people to
take just the bits and pieces of content they need, and they are all amenable
with computer-based delivery and distance learning. So I think we are poised to
do the kind of thing you’re talking about.

MS. GREENBERG: Okay, great. Thank you.

DR. CARR: Just to follow on to that, are there measures of success that
you’ve identified when folks have gone through this program? How will we know
that we’re better because of it, or they’re better, or what happened because of

DR. FRIEDMAN: The measures of success are recruitment into, successful
completion of, placement in appropriate positions, and success in those
positions. All of those are going to be measured, and we have a separate,
through NORC, evaluation contract of the workforce program that will be looking
at these things, particularly the outcomes of the training after people
graduate and seek and hopefully obtain positions.

DR. CARR: Blackford?

DR. MIDDLETON: I had a similar thought. Thank you. Good morning, Chuck.

I guess the key question fundamentally is, are we succeeding? I worry on a
couple of dimensions. Let me ask some very specific questions and maybe have a
follow-up, if that’s okay.

What is the best leading indicator of adoption, in your mind? I think the
NAMCS data, of course, are really trailing indicators. I wonder if registration
or other indicators might be a better leading indicator of adoption that might
actually be beneficial to the office. Do you have any thoughts?

DR. FRIEDMAN: We are putting in place some more, we call them
“finger-in-the-wind” indicators, where we really can get a sense that
is less detailed than what we get from the NAMCS but more immediate than we can
get from that annual survey.

I am really not comfortable talking in great detail about what these are, in
part because I don’t have the latest knowledge of where they stand. But suffice
it to say, we are looking to address just the matter you’re bringing up. This
is obviously a very quickly changing situation, and the periodicity of one year
to take measurements is not frequent enough.

DR. MIDDLETON: Speaking to the choir, I’m sure.

I guess the other just quick follow-up would be, do you have a sense of the
number of physicians registered for the incentive?

DR. FRIEDMAN: Registered for?

DR. MIDDLETON: For the incentive. You actually have to go through the
registration process.

DR. FRIEDMAN: Right. I thought Lorraine reported.

DR. MIDDLETON: Did I miss it? And CMS is the definitive —

MS. DOO: Do you want that number again?

DR. SUAREZ: Did you say 20,000, Lorraine, at the beginning?

MS. DOO: Yes. For Medicare-eligible professionals it is 18,000; hospitals,
23. That’s on the Medicare side. For Medicaid-eligible professionals, it is
777, and the hospitals is one.

DR. CARR: I know you have three parts to your presentation. We have Joy and
we have a break at 10:15. I will have Raj and then Larry, and then I would like
to give you the opportunity to move to the next topic.

DR. CHANDERRAJ: My question is the training programs. Where can we find a
list of where the qualified training programs are, or if a university can apply
for this?

DR. FRIEDMAN: This was a one-time funding opportunity. In terms of obtaining
funding, that opportunity has come and, unfortunately, gone. But the list of
the programs is available on our website. I will show you the URL. You can
pretty easily navigate to it from the landing page.

That said, for institutions wishing to stand up programs like this, we have
resources for them. The curriculum materials, for example, are going to be
available in June to them. Speaking as a lapsed university professor, I know
how much of a head start it can give in starting up a new program if you have
these kinds of materials available to get you started.

DR. CHANDERRAJ: My second question was the free clinics where by
governmental regulations we cannot charge any patients, and are therefore
Medicare patients not eligible to be seen in these free clinics? These are
volunteer clinics, and they are not getting any incentives.

DR. CARR: In the interest of time, that is a great question but very
granular. To keep it at this level and to get through, I will ask you to talk
to Chuck at the break on that, if you would.

DR. CHANDERRAJ: All right.

DR. CARR: Larry?

DR. GREEN: Chuck, in the spirit of your slide, General Program Update, I
want to do one very specific and two general things here really quickly. The
very specific thing is the best data set I am aware of in the United States
that is assessing family physicians’ uptake of electronic health records is the
American Board of Family Medicine’s registration data set that our
board-certified family physicians must complete. It has a 100 percent response
rate and a 100 percent data rate or they don’t take their part 3.

One of the questions on there is just a straightforward, “Do you use an
EHR in your practice?” We’ve been monitoring that for years, and there is
a steady upward trend of these guys year after year. Last year it ran it over
60 percent who answered, “Yes, I use an EHR.”

I am quite confident that Blackford’s comment about these data trailing, the
state of things, particularly in primary care and particularly for family
physicians, that indeed they are trailing. I think we should celebrate what
successes we can find.

DR. CARR: One other question. The 350 certified EHR products, are they fully
certified to meet all of meaningful use, or are some of them are modular?

DR. FRIEDMAN: Some of them are modular.

DR. CARR: Do we know how many are fully certified to meet all of meaningful

DR. FRIEDMAN: I don’t have that number off the top of my head. Joy, do you
have that?

MS. PRITTS: I don’t have the — well, let’s see. Of the 350 — no, I would
be guessing, but I will say that the number of modular products is higher for
inpatient care than it is for ambulatory, which I think everybody would expect.
It’s about two-thirds to one-third in that context.

DR. FRIEDMAN: I showed this statistic in part, Justine, to make the point
about the rapid growth, that the certification program is identifying a market,
a flourishing market, of EHR products, and I think that is the macro conclusion
I would like to draw from this.

Could I just respond briefly to Larry?

DR. CARR: Sure.

DR. FRIEDMAN: One point, Larry, and thanks for making that point. This 29.6
percent represents a proportion of primary care practitioners who, on the
NAMCS, checked a specific subset of boxes. That is always going to bring down,
since you have to touch all the bases, the number who meet that criterion.

There is an overall question on the NAMCS, “Do you have an EHR?”
and it generates numbers very comparable. I don’t have the exact number for
2010, but historically that number has been very comparable to the number the
American Board of Family Medicine has gotten on its survey.

DR. GREEN: I wanted to make two comments about performance related to ONC
that I have heard since our last meeting and your last report. They both relate
to what you have on your slide there about assistance.

The first one was yesterday at our population privacy workshop. There was
high praise for the ONC and the way they’re working with the beacon communities
and complimenting the cooperative agreement arrangement. To be very specific,
Patrick Gordon in Grand Junction basically said, “This is a good federal

We are talking about the west slope of Colorado here, and they really
appreciate what the OMB is doing and like it. This was unequivocal
communication. This wasn’t hemming and hawing. They said, “This is a great
relationship we’ve got; we’re glad to be a beacon community.”

Secondly, at Fort Morgan Community College in Fort Morgan, Colorado, out on
the eastern plains, the community college president there, speaking in behalf
of community colleges all across Colorado, said how enthusiastic they are and
how pleased they are to have these programs related to HIT and how quickly they
have brought them up.

Once a community college gets a course number for this thing, at least in
Colorado — and it was his belief that this is nationwide — that course number
works in every community college. That curriculum can be transported, et

I think this is another huge success story you guys are having in terms of
building assistance, and I wanted to report that.

DR. FRIEDMAN: That was our goal, Larry. Thank you.

Justine, I need advice from the chair. I want to be sure Joy gets some time.

DR. CARR: Yes. What I would ask is if you could just give us a quick update
on the workshops. Let’s hold the PCAST because we have some time after the
break. We have 45 minutes to talk about PCAST, so you could give some
introductory comments and then — will you be here after the break?

DR. FRIEDMAN: Yes, I will be here all morning.

DR. CARR: Okay. So let’s just hear about the workshops and then on to Joy.

DR. FRIEDMAN: I just want to mention two workshops which are, I think,
forward-looking and touching on important topics, both of which took place in

Working with the National Institute of Biomedical Imaging and
Bioengineering, the NIBIB, we held a workshop on January 10 and 11 entitled
“Images, EHRs, and Meaningful Use.” The motivation for this workshop
was an observation that images, not the reports of imaging studies but the
images themselves, are important biomedical data that had not yet been
contemplated in any systematic way by the meaningful use machinery writ large.
So we got about 130 people together, and a public report about this will be
forthcoming soon to explore the roles of image and imaging data, not just in
image-intensive subspecialty practice but in primary care and all components of
health care.

Also, because the imaging community got out in front of this problem very,
very early, what we can learn from them about how they have made images
exchangeable, mobile, and liquid through their dot-com standards and other
mechanisms the imaging community has done.

So just be on the lookout for this report. I think it is very interesting.

Another workshop we had on January 20 and 21 actually touches on the PCAST a
bit. It was called “Next Generation Interoperability for Health.”
This was a fairly technical workshop focusing on the 5-to-10-year long-range
view of information mobility. We actually integrated specifically in this
report, into these deliberations, the findings of the PCAST report. Three of
the leads of the PCAST work were there. A very useful perspective that if you
want some nighttime reading, I would highly recommend to you called,
“Ultra Large-Scale Systems Engineering,” and as soon as you read
this, you recognize that this is the kind of thinking that has to be behind the
creation of a national-scale environment for secure and trusted health
information exchange.

Then a topic that is a little bit arcane but, I think, very, very important,
called the semantic web, which is mechanisms for actually, through metadata
tagging and other mechanisms, actually being able to connect pieces of
information that are related by their meaning but stored in distributed
locations across the Web. We are working still to put the findings of this
workshop together, but I also think this will be of interest as a long-term
vision when it is forthcoming.

Let me just say in conclusion, I just want to be sure everybody knows that
the ONC PCAST workgroup is holding public hearings on February 16 and 17. I did
not want to miss the chance to just make everybody aware of that. Is that the
wrong date, Paul?

DR. TANG: I will check – 15th and 16th.

DR. FRIEDMAN: Oh, 15th and 16th, okay. Sorry, I don’t
know what I was thinking.

Then, please, if you want to continue any of this dialogue, feel free to
contact me directly. Much more detail on everything I’ve discussed can be found
at healthit.hhs.gov.

Let me repeat, the date on this slide is wrong. The PCAST workgroup hearing
is February 15 and 16.

DR. CARR: Perfect. We will go back to PCAST.

Joy, turning it over to you now.

MS. PRITTS: Good morning. I am going to give you a little update on the
privacy and security activities of our office, ONC’s office in particular. At
the end I am also going to give you a little bit of information on privacy and
security activities at the HHS level that I think you would want to know about.

We continue to work with the HIT policy. There is a privacy and security
tiger team with that. They have produced a number of recommendations. We are
processing those recommendations internally with hopes that we will have formal
action on those sometime this year.

While we are doing that internal track, we are also continuing this, what I
would call the external track, of continuing to have public hearings on key
privacy and security issues. Many of the issues that we are addressing in the
tiger team have come through our programs or through other means of
stakeholders identifying these are key issues that we believe need to be
addressed first.

There are countless security and privacy issues to be addressed. So what we
are trying to do is prioritize them and get to address the ones in particular
that really need to be addressed in order for people to be able to achieve
meaningful use.

The most recent privacy and security recommendations coming out of the HIT
policy committee address provider authentication, I would say at the
organization level, and they deal with digital certificates. They recommend
that everybody who engages in health information exchange be required to have a
digital certificate and that — I am going to skip some of the detail in these,
given our time here — but that we should not reinvent the wheel here, that
there are organizations that issue these certificates, that there are
organizations that should rely on existing criteria because there are a number
of things that you can use as the basis for authentication, and in particular
that we should leverage existing processes such as the federal bridge.

They have recommended that ONC establish a new accreditation program for
reviewing and authorizing certificate issuers, and that this should be part of
the Governance Work Group. As you know, a lot of the work that we do in privacy
and security overlaps extensively with what is going on on the governance side

They also recommend in specific that ONC, through the Standards Committee,
select and specify standards for digital certificates in order to promote
interoperability, and that EHR certification should eventually include criteria
that make sure that everybody is able to actually use these certificates for
the purpose in which they were intended.

In addition to this kind of high-level authentication issue with providers,
the tiger team also held a hearing in December addressing a very crucial issue
on patient information matching. The entire video of this hearing is available
on our website. It was a very informative hearing. The ultimate conclusion
there was that there is a lot of research and work that needs to be done in
this area. Particularly, I would like to highlight to this group that they
recommended that research be conducted to establish metrics for establishing an
acceptable level of matching data to the correct patients. Some of the
discussion here was quite interesting, as there are fairly strong opinions in
this area as to what should be done, but the testimony from a number of experts
was almost uniform in saying they just don’t think we know enough to be able to
be measuring things yet.

The next step of where they are now is they are looking at provider
authentication. I call it the human user or the carbon-level life-form level,
which is what level of assurance is appropriate; under what circumstances is it
going to deal with the two-factor authentication in some circumstances, just as
the DEA regulations require. That is the one of the things that has been
brought to their consideration.

Also, patient ID management, which is very crucial for individuals to be
able to access their own health information as we go forward.

As a follow-up, I wanted to give you a little update on a follow-up to a
prior recommended we have received from the group, which has not been formally
acted on in the department, but we are pursuing the recommendation nonetheless,
which is they had made recommendations on what is called data segmentation,
which is the ability to send certain health information but not all in a
record, which is a key issue in dealing with sensitive health information, in
particular substance abuse-related information, which by federal law requires
patient permission to send.

We are actually in the process of funding some projects with respect to
finding out how this is implementable in the real world, looking at potentially
some standards that may come out of this and seeing how it actually works.

The focus that we have in our projects is on behavioral health, because
there is a federal law and because there is a uniform need for this across the
country. We are working very closely with SAMHSA and ONDCP, which is the Office
of National Drug Control Policy, on this issue.

We are also at ONC doing a lot of work concerning the Affordable Care Act.
There is an enrollment workgroup which has a privacy and security task force.
They are addressing a lot of issues of privacy and security, including patient
identity management here, also. The enrollment workgroup is trying to set up
what I call one-stop shopping for individuals to enroll in health insurance,
food stamps, and other social services, which is part of the act.

It is a very complicated area, as you can only imagine, because all the
different agencies are subject to different laws and restrictions as to how
they can share their information. But they all have this need for making sure
that the patient identity is matched here, because this is your entryway into
obtaining potentially a lot of different social services.

We have also been working on some of the accountable care organization
privacy issues. I believe Don Berwick, in his speech recently, said that they
recognize that there are issues that surround how that information will be
shared even within the accountable care organizations and between CMS and those

An update on personal health records: Our workshop on this issue was
completed in December. We have a study under way which is in its second drat,
and we are hoping to get a report to Congress with recommendations later this
year on which federal agency, if any, should be regulating personal health

In addition to our work, we are also working with other government agencies
and departments on privacy and security issues. You should be aware that there
is, I would say, an administrative-wide privacy initiative going on, stemming
from primarily the Department of Commerce and the FTC. Some of this is in
response to the EU directive updates. There is a big move in Europe to update
their privacy directive to make it more Internet focused and how information is
being shared now, and the United States has been criticized as being a little
bit behind the game in that respect. So some of our activity here is in
response to this kind of outside pressure.

The Department of Commerce has issued a green paper. For those of you who
don’t know what a green paper is, it’s what you get before you have a white
paper. So it’s not a formal policy but it’s in its green stages first. So it
sets out some considerations that they are making, including voluntary industry
standards for adherence to fair information practices for all commercial
exchange of identifiable information on the Internet.

The FTC is also very active in this area. They have released their FTC
privacy framework recently, which was written by staff. Just the other day they
released some more guidance on medical identity theft.

Turning to a broader concept, at least within the department, the Federal
contains a notice of projected agency activity in rulemaking for
the next quarter. It is of note that the last update in 2010 listed a number of
different activities that are happening at HHS that really do impact privacy
and security very directly. One of them that was listed is an NPRM respecting
individual access to protected health information held by CLIA laboratories. So
that is an NPRM that is projected to come out, I believe the first quarter this
year, because that’s how the information is sent out.

Then there are also final rules that are predicted to come out early this
year, including those on breach notification, the HITECH modifications to HIPAA
privacy/security enforcement, and the GINA, the Genetic Information
Nondiscrimination Act, the GINA regulations.

I haven’t caught us up, but I hope to have closed the gap a little bit.

DR. CARR: No, that’s great.

We have time for two questions. Walter?

DR. SUAREZ: A very quick one, Joy. Any updates on the accounting or
disclosure regulations? I know OCR was expecting to publish that within the
next few months, perhaps.

MS. PRITTS: I think the information that you have is probably the most
current and that it would be an NPRM.



DR. CARR: Leslie?

DR. FRANCIS: Any projected dates for the final rules on breach notification,

MS. PRITTS: It is my understanding that the way the Federal Register
notice — I am only going to give you dates that are set out in the Federal
notice — and it is my understanding that that predicts your
agency’s activity. They issue that twice a year. In fact one came out in
October, so they were expecting to accomplish that within the next 6 months,
which would be before April.

DR. CARR: Okay, one more. Go ahead, Mark.

DR. HORNBROOK: This may be an unfair question given how much workload you
already have. But is ONC thinking at all about, say, a consumers’ handbook for
the people who own electronic medical records? That is, what should I as a
patient know about my electronic record and how do I manage it?

MS. PRITTS: First of all, most people don’t own an electronic medical
record. We use that term for the provider’s record. Are you referring to a PHR
or the provider’s record?

DR. HORNBROOK: The provider’s record and how the patient is going to
interact with that.

MS. PRITTS: There is a large — actually, there has been in the works, the
planning stages, for a number of months a consumer outreach campaign. There is
a provision in HITECH that directs the Office for Civil Rights to conduct such
a campaign to advise individuals about their rights and how their health
information is used.

We are going to be conducting a number of what you might call town hall
meetings in six different areas starting, I think, fairly — hopefully, those
will all be done before August.

One of the purposes of those meetings — I mean it’s just going to contact a
small fraction of the individuals in the United States, of course — is to
gather information about what information would individuals like to know about
this, what is important to them, because there is a lot to know, but not all of
it is really relevant from the consumer perspective. It is serving the public
purposes for us for kind of fact-finding to figure out where we should head
with this campaign and to develop additional materials going forward for
individuals, more consumer-oriented materials, but also to engage the consumer
groups at both the national and the local level in this process going forward,
because we cannot possibly do this on our own. We really do need the consumer
groups to be able to work with consumers locally to help answer some of the
questions that they may have.

DR. CARR: We are going to stop for a break now. Joy, that was great. Thank
you. You really covered a lot in a short amount of time. The same, Chuck,
thanks very much. We will get back here at 10:30. We have a lot to accomplish
today, so quick break.

(Brief recess.)

DR. CARR: The meeting will resume.

Let me ask, is there anyone on the phone who has joined the meeting or
continuing on the call?

MS. DOO: This is Lorraine Doo still on the phone.

DR. CARR: Lorraine. Okay, great. Anybody else?

(No response)

Agenda Item: PCAST Report Review

DR. CARR: Our next topic is PCAST report review. We had talked about this on
the executive subcommittee. Just by way of a brief introduction, then perhaps I
will turn to Chuck to ask for his comments, but basically the PCAST report —

PARTICIPANT: Chuck just went to the lobby.

DR. CARR: All right, then you have me.

The goal, by my read, the PCAST report focuses on developing a universal
exchange language for health care and also to have atomic data elements with
metadata tags. These metadata tags improve search technology to locate data and
to protect data.

I think what we wanted to talk about with the intent of the PCAST report is
the resonance with the goals of NCVHS. I think certainly some of the things
stated by this report, the purpose is to realize the full potential of HIT to
improve health care; second, to increase interoperability; third, improve
health care delivery, support comparative effectiveness research, decrease

I think that there have now been a number of commentaries coming from
various groups. I think Chuck can probably take us through this, but I think
the areas of focus have been on the dramatic goals of reorganizing data in this
way, the time line, the effects on ONC progress to date, the process of
implementation, considerations about privacy and security and then also about

So what I would like to do is, Leslie or Marc, in Leslie’s absence, would
you like to go through the PowerPoint that we have at everybody’s place?

DR. OVERHAGE: The first note was, just as Justine alluded to, that there are
a number of aspects of the PCAST report that are well aligned with the things
that NCVHS has been thinking about, a number of things that are well aligned
with the trajectories and directions that NCVHS has been thinking, the next
hills they’ve been looking over, including thinking about ways to strengthen
privacy and security of data, in particular in these different use cases,
enhancing the possibilities for using information in ways that are less likely
to be able to be linked to individuals.

On the next slide, improving clinical care through efficient health IT
infrastructure; structuring information in EHRs for real-time secondary uses,
which correspond with strengthening the privacy and security for use; and
fostering the network effects, the network externalities that can increase the
utility of information.

On the next slide, what we tried to do was create a group process to come up
with some of the areas or questions where reading through the report raised for
folks that might be jumping-off points for discussion.

Looking at it primarily from a privacy standpoint, first, that linking the
data points in a record for secondary use and really thinking about how does
that translate when you still have to bring the data together in a single
place, that, presumably, you are going to have to do that for genetic data, and
there may be some real challenges, and some of the geneticists that folks
talked with about how you might be able to implement that kind of linkage for
genetic data in particular. But I think it is probably a pretty generic issue.

Would you like to just go through all of these, or would you like to have
some dialogue about the points as we go?

DR. CARR: What I am thinking is if we could even just go through, have each
of the subcommittee co-chairs give a couple of high points and then let’s come
back to say where do we go.

Larry, you sent me an email.

DR. FRANCIS: In particular, the point there was about if you need to link
data points, then the de identification vision is potentially gone.

DR. CARR: Right. I think we would benefit by hearing from everyone, and
perhaps Chuck will be back by then as well, and then we can get into the
detail, because I think the question for us is do we want to put together a
letter with some of these points, and would it be addressed to the secretary
and/or to other agencies? So why don’t you keep going, Marc.

DR. OVERHAGE: The second, and I will just stick with the major bullets and
folks can read and look at the sub-bullets. We just recently prepared a letter
about the tagging of categories of information. I think many of the issues we
raised in that letter apply in this model as well. So that still needs to be

That really is the next point as well: the meta tags applied in a consistent
and efficient manner across providers, across populations.

It was interesting that they observed the limitation on page 31 that was
created by the need for agreements between organizations that were going to
exchange data, but then they never came back to that, and I guess some of us
did not quite follow how their approach solved the need to have agreements for
data sharing between organizations.

On the next slide, they talk about, on page 46, informed consent could be
more fine-grained privacy protections, and that seemed a little broad, without
a lot of development, as there were a number of things.

We thought it would be useful to talk about the role of patient autonomy, as
they allude to on page 45.

Then the question of how far does this go. The focus seemed to be on
electronic health records, but obviously, as we’ve talked about, the same
issues with personal health records, health information exchange, and so on,
could be raised.

So those were the key points.

On the next slide there is just a listing of a summary of those at a very
high level.

DR. CARR: Blackford, do you want to add?

DR. MIDDLETON: It is hard to follow Marc, as always, and the great thinking
of the security, privacy, confidentiality, and standards committees, et cetera.

But the quality perspectives, we felt the PCAST report was useful to
contribute to the notion of improved tagging of data and metadata surrounding
our use of data in clinical systems, as well as quality reporting and clinical
decision support. Certainly the history in syntactic data standardization and
semantic modeling is to proceed from messaging architectures into increased
modeling and tagging to better identify what the data is, where it came from,
who supplied it, how it should be used, and how it should be maintained, and
how trust and privacy can be propagated associated with the data.

I think the PCAST is useful in describing ways in which we may improve the
liquidity of data and facilitate data aggregation once we have a better
understanding of data in flight or in transit. However, it is critical to
really make sure that, as we think about tagging strategies and standards
around metadata assignments, to start with a clear understanding of what source
data is from the source systems. Our feeling was there was a little
naïveté or perhaps inadequate attention given to how these data are
generated in source systems, where they come from, and the state of the art,
the real world of where clinical data is.

You cannot start with a de novo DEAS or universal data set. We have to start
with the data which we have. The industry is flush with data. We can improve
upon it, but we cannot just ignore it and chuck it out the window. So we think
it is important to have this clear understanding of source data, the data
systems, and current data integrity, and it is naïve to think we can
create de novo a wholly new data set. It really must be an evolutionary

Thus, it is important, we think, to align PCAST-type thinking with other
incipient and emerging efforts around data standardization, normalization, and
currently just pointing to the NQF/QDF efforts, which started as the quality
data set, now called the quality data model — my apologies to QDM — as well
as other efforts in HL7 and elsewhere. I think that’s the most important thing.

I did forget one other bullet, I am sorry. We should also think about how
the tagging and metadata work can improve the knowledge-management processes
for data and knowledge associated with data. This is an exceedingly difficult
challenge, even with the best constructs from SNOMED and other standard
terminologies and whatnot. Once you begin to apply these constructs in use for
CDS, for data representation, or for quality management, if they make a change
in those resources and you have a whole bunch of systems using that
representation formalism or the semantic associations, it can be really
hazardous when they make changes that are not well forewarned or whatnot. So we
think there is a knowledge-management and sort of process-support part of the
tagging that deserves more attention.

But I think the most important point — I meant to conclude with this — was
to align with existing emerging incipient efforts around NQF, HL7, and others
to bring the tagging idea into the real world with existing data sets and

DR. CARR: Excellent, thank you.

DR. MIDDLETON: I will ask Paul if he has any other comments.

(No response)

DR. CARR: Judy or Walter?

DR. WARREN: I will start, then Walter will chime in. Actually, Blackford
stole already a lot of my comments. But I think we are going to find that in
this report.

When I approached this, the first thing I had to do was to back myself out
of it, because I kept responding to it from my own experience and how I’ve
spent my career. I wanted to be open to try to really figure out what they were
saying in there, because I also agree that to me the report was kind of
naïve because a lot of work did not reflect some of work that has happened
through the standards organizations, the SDOs, especially work from HL7,
SNOMED, ICD-10, RxNorm, so some of the terminologic standards.

I was also struck by, we were going to put all these meta tags on the data.
So my first thing was, who is going to generate the meta tags, or does
everybody generate their own and we’re still in the same shop? The messages can
get passed around, so if it’s like the Internet, yes, we can pass a lot of
information around the Internet, we can get it there accurately, we can read it
when we get it, but we still cannot aggregate it, we cannot combine data, we
cannot look at it, unless it’s some of the stuff that you’ve seen in mashups
that have been generated that way. Usually that data is fairly simple, where
health care data is very complex.

I agree with Blackford, part of that is we’ve got legacy data, and we’ve got
data that humans, in their wisdom, put down the right data, but they put it
there within their own frames of thought, not with any idea of using that data
later on for something else. So it’s a one-input, most of it is not well
formatted for machine readability, et cetera. So I was worried about the meta
tags, because it seemed like we were just going to perpetuate whatever we were

Then they talked about choosing the right granularity for data tagging, and
I thought, well, who is going to choose that granularity level? There was never
any debate about that. I think that has been one of the discussions we’ve had
in the informatics community; that is, when we build EHRs, how far down do we
code the data elements? Do we code everything and make everything selectable?
Do we also do notes? When do we switch to images? When do we switch to other
kinds of data? None of that was being talked about either.

They talked about atomic level of data tags. Again, who defines what’s
atomic? What is atomic to one person may be more molecular to somebody else.

It didn’t really go back and use a lot of the work that both ONC and NCVHS
have started, basically through looking at HIPAA, of trying to come up with
standards, trying to get where we can harvest data out of our EHRs. So I was
concerned about that.

Those were my kind of high-level hits.

DR. CARR: Walter, did you want to add anything?

DR. SUAREZ: Yes, a few other points, I think.

To me, the biggest, or one of the big issues, I guess, I found was the lack
of a definition of what are some of prerequisites to be able to achieve the
ultimate goals of the report. I think the report paints a particular vision of
the future that involves tagging and metadata and much bigger integration of
health information across the board, but it doesn’t seem to recognize the
technical and political and policy prerequisites that would need to be put in
place before that can be achieved.

I think we are just transitioning our whole industry into electronic health
records, moving at a relatively faster pace over the last few years, with all
the investment that we are making, and this puts a picture of a vision of
integration of health information that, if borrowed really from other
industries, other sectors, including social networking and all these other
activities that are happening, without recognizing in full detail, first of
all, the complexities of the health care industry itself, as well as the
current status of evolution in terms of infrastructure, I think that is a big,
big element that is missing from the report.

I think the other aspect is really the aggressive time frame for trying to
achieve these and the risk that this time frame imposes on things like patient
safety and privacy. Certainly those are, to me, the two most critical issues
about the quick adoption and implementation of these types of recommendations,
the impact that they might have on patient safety, number one, and on privacy.

The third one is really this concern about the need to have policy first
before technology. I think many of the questions and many of the
recommendations and the directions provided by the report assume some quick
technical solutions without considering the need for developing a policy
context for those solutions. I think that is the other major element.

Lastly, I think just to emphasize another point that ought to be made is
really, over the last 5 years — 5 years ago we were just starting this journey
— in the last 5 years we have seen a lot of development of standards,
interoperable standards. We put a lot of work on all the initiatives back 4 or
5 years ago, including HITSP, with the development of a number of interoperable
standards. There are efforts like IHE internationally to develop interoperable
standards. Many of them haven’t been started to be implemented yet because they
are just in the process of being tested.

All of that did not seem to have been taken into account necessarily. They
could have jumped from maybe where we were 5 years ago into this vision without
really looking at all the work that has been done and the availability of a lot
of these interoperable standards that are just evolving and beginning to become
available in all sorts of aspects of information exchange, not just purely the
transport mechanism or the formatting standard or the vocabulary standard, but
things like privacy and security and privacy preferences management and things
like that.

So I think that lack of recognition or acknowledgment of the fact that there
is a wealth of work that has been done that is being tested and that there are
some success stories out of those and some lessons to learn out of those, they
didn’t take into account.

DR. CARR: Thanks, Walter.

Larry or Sallie, do you want to add on?

DR. GREEN: Sallie and I want to point out that we haven’t had this nice,
thorough discussion of this with the populations committee, and we’re looking
to more discussion about this. But at this point we have reached agreement
about two or three things, just between the two of us.

One is we looked at the PCAST report parallel with the IOM digital
infrastructure report and sort of took them as a package deal that were in play
concurrently. We thought there was a lot of consistency between them pointing
in similar directions.

We don’t have comments to offer separately for the two reports at this
point, but between the two of them, we would say that we don’t think anyone is
going to accuse them of lacking ambition. As sort of normal folks, as opposed
to people who live and breathe IT, we found the reports simultaneously
inspirational and totally intimidating.

We are not at this point certain that this is NCVHS territory that requires
NCVHS to do anything, nor are we certain that it does not.


So we are looking for some clarity about what the NCVHS’s position might be

We would share two draft conclusions. One is we would like to surface that
perhaps while we are designing the new world to exchange everything, that we do
something that would make it possible to exchange something.


We think that that ought to happen pretty darn soon.

Secondly, which is a bit of a political contextualization of it, as these
reports were put into play, our President is emphasizing the need for the
United States to step up and lead in innovation in challenging ways.

It seems to us that these two reports spot a very big challenging innovation
problem on the order of landing someone on the moon. We suspect that it is
maybe a little more complicated than that was, and we suspect it will be at
least as expensive.

DR. CARR: Good.

Did you want to say something?

MS. MILAM: I will just mention briefly I thought it was interesting to look
at our committee’s reactions to it. Privacy seemed to find more advantages in
it than maybe some of the other committees, and that is sort of reflective of
what people I guess across the country as a whole are reflecting.

One of the staff to this committee circulated a website that categorized all
of the different commentary from the different national associations. The
privacy watchdogs and associations seemed to find more value than did the
American Hospital Association or HINs or some of the others.

DR. FRANCIS: Could I interject in that for a second? I actually think that
the privacy, although there is a great deal of wouldn’t this be wonderful,
highly granular, there are lots of concerns from the privacy folks that start
with the question of whether policy is driving this or technology is driving

Just to give you an example, take what Joy talked about, about SAMHSA. There
is a legal requirement that that be handled separately. Now, whether the way
you do that is via a meta-tagging mechanism or via some other type of
mechanism, that’s a technical question. Meta tagging might be a very useful
technical way to do that. I don’t know, I’m not a techie type. Whether you do
it and what you classify as sensitive behavioral health information are policy
questions, and that has been our territory as NCVHS.

DR. CARR: Chuck, I want to turn it over to you, but just a point of
clarification. I thought part of it was by having these atomic elements and
metadata that there would be an option for patient control, that that would be
part of the goal.

DR. FRANCIS: The privacy worry about that is that patients want default
settings. So if I say, for example, I want my substance abuse information kept
with certain sorts of special handling, it is impossible for me as a patient to
go say this is substance abuse and this is substance abuse and this is
substance abuse.

DR. CARR: I do want to give Chuck time. Is this critically important?

DR. SUAREZ: This is specific to this point of meta tagging and its use for
privacy preferences and privacy preference management. When history was around,
we worked significantly on this concept of how to allow for privacy preferences
to be linked to information and then be manageable from the perspective of the
entity that has the data as well as the entity that receives the data.

Clearly, while technically there are some ways to achieve that, and we
actually created a standard for that, or a profile for that, the biggest
concern was granularity. The more granular you go down into allowing tagging at
the field level, at the data element level, and then controlling for several
variables about that, including who can disclose, to whom it can be disclosed,
when it can be disclosed, for what purpose can it be disclosed, how long can it
be disclosed, all those factors about that particular one element inside a
whole medical record is totally, at this point, totally impossible, not just
from a technical perspective but from a cost perspective and a management

DR. CARR: Right. Okay, great.

Chuck, I would like to turn it over to you.

DR. FRIEDMAN: I was going to speak actually to Leslie’s point as well. I
think the people in this room, and I would include myself in that number, who
have had the sublime experience of actually designing and deploying systems
that have to work in the world, all understand that there are a very, very
large number of details in this relative to the implementation of the PCAST
recommendations that have to be worked out. So let me just put that forward as
a premise or a preface.

That said, I am going back to our discussions about data segmentation and
our having a sense of déjà vu, because I was saying — and the
PCAST report wasn’t out yet, but I knew what it was going to say — keep your
minds open about this, because I think this PCAST report, when it comes, is
going to give us a kind of liberating perspective in the sense that, with full
recognition that we have to define what an atom is, and whether things are
protons, atoms, or macromolecules is going to need to be worked out, the vision
I think that is in the PCAST report is one that says that an atom will inherit
its sensitivity from the metadata that enwrap it — and I realize I am
oversimplifying — but we don’t have to create a vision where one category or
class of data elements is sensitive for all time and another set is not. That
can be conveyed, the sensitivity of any element of data can be conveyed,
through a context that is encoded in the metadata that wraps it.

I find, just speaking for myself, that to be a kind of liberating vision. It
gives us a flexible way to think about things that we didn’t have before and
maybe gives us options that we didn’t have before. With options come all kinds
of complexities, but I would rather have those options than be forced into
categorizations which, once made, are very hard to change.

DR. FRANCIS: That it is technically — it allows for all kinds of
interesting flexibility. I mean that’s why it’s cool. But it doesn’t get rid of
the questions that are the prior policy questions.

DR. FRIEDMAN: It doesn’t write the policy. No question about it.

DR. CARR: So, Chuck, did you want to fill in any more? We didn’t give you
the time earlier to speak about ONC and PCAST.

DR. FRIEDMAN: Oh, with regard to the report? I was just going to show a few
slides describing the charge to the PCAST working group that ONC has put
together. I was going to make the point that it is a working group of both the
standards committee and the policy committee. It has 17 members, some of whom
are members of those committees and many of whom are not. The chairs are Paul
Egerman, who was an IT consultant and a member of the policy committee, and
Bill Stead, who was a member of neither committee but, of course, is a
well-known informatician and the lead author of the report from the National
Research Council that came out about a year ago that has been so informative
about some of the challenges of electronic health records.

I just wanted to make those general points. Their report to the Health IT
Policy Committee is going to be due and forthcoming in mid-April. I think the
target date is April 13, with the public hearings next week.

DR. CARR: And who is speaking at the hearings next week?

DR. FRIEDMAN: The agenda is on the website. It is a very long list of folks
in the usual format, with thematic panels and several informed individuals on
each panel.

DR. CARR: What I would like to do, we have about 10 minutes to talk a little
bit more about NCVHS and what we want to do or say and to whom we want to say

DR. SUAREZ: I guess I would say that we do have a number of things to say,
that we should say them, that we should actually formally draft a letter and
submit it to the secretary, who is the person that we report to, really, or
provide advice to. The time frame, we can work it out, because I think there
are some steps that we need to take in order to achieve that.

The second point that I wanted to make is I think it is going to be
beneficial to, in that letter, certainly — and I think this was mentioned,
perhaps — go back to some of the recommendations we have made in the past and
emphasize some of the points that we have made, as a point of reference more
than anything. I know this experience might be liberating in many respects, but
it creates a lot of challenges in many other respects. So I think it is going
to be important to have that.

Then the third thing I wanted to mention is perhaps we can benefit also from
the information that will be presented next week during the two-day hearing.
Some of us will be actually at the hearing, participating and attending.

DR. CARR: Bill?

DR. W. SCANLON: I guess the question I would have, I’ve heard sort of
multiple perspectives here, and I think I am going to pick up on Larry’s use of
the word “inspirational.” That I think serves as the general tone of
how difficult some of the things that the inspiration might imply will be.

The question in this letter in terms of where the emphasis will be, you
could ask how fast can you run, and the answer might be, well, it depends on
who is chasing me. I think that this situation is that if you think that the
health care system is going to operate as it has in the past with business as
usual, then the challenges are overwhelming. We will sort of work through an
evolutionary process — you know an evolution can be quite protracted –or if
you think the environment is going to change, and Jim was very polite this
morning in talking about the budget and the budget deliberations, because we
have a focus here in Washington right now on deficits and substantial
reductions in deficits, of which health care is going to be a part of that. The
question is going to be, do we have the instruments to make those reductions in
a very well-informed and less harmful way or not? Because they may ultimately
happen regardless. That is the kind of concern I have.

I want to say we need to put enough emphasis on the inspirational part,
enough emphasis on the fact that we do really need to think about how do we
accelerate our activities, overcome the challenges, because if we don’t, there
is the possibility that there is going to be real harm that happen when
necessary reductions do occur within how much we spend.

DR. CARR: Well said.

I think when we talked at the Executive Subcommittee, Paul, what we said is
the format that Leslie and Marc have put together, what is the alignment of
PCAST within NCVHS priorities, what are the hot points needing work, and the
challenges? And we should say the strengths are important, not just the
alignment with us but actually the additional strengths, and what are the hot

I think, clearly, there is a lot of work being done to think through all of
the challenges that come about with a disruptive transformation.

To your point, I think we would perhaps have a letter that would outline
alignment, benefits, and challenges to have our voice heard but defer to the
very detailed work that is ongoing already with that.


DR. MIDDLETON: I just had a related thought. Paul and I talked briefly and
he brought this up, so whether it’s good or bad, you can blame Paul, and he is
not here.

How common is it for a FACA to comment on another FACA’s report? I wonder if
there is precedence, or is that the normal operating procedure? It could be
that we note this report and wait for the implementation phase and somehow
engender ourselves to be involved in whatever the appropriate activities are.
Or is it more appropriate to say something now?

MS. GREENBERG: This is a report to the President. This wasn’t specifically a
report to the FACA, I don’t think. Even if it were —

DR. FRIEDMAN: PCAST, as I understand it, is a FACA.

DR. W. SCANLON: Yes, it’s a way —

MS. GREENBERG: Oh, all right. I thought you guys were just —

DR. FRIEDMAN: PCAST itself is a FACA, and this report is a report out of a

MS. GREENBERG: Not a problem. All the more so.

I am thinking back several years ago when there was a president’s commission
— and whether these things are federal advisory committees or not is sometimes
a little murky — but on quality measurement, and the committee commented on

I have a few concerns. One is, can we in a timely way put together comments
that will achieve consensus from the whole committee — it sounds like we are
not at all different places on it, although you might emphasize one part or
another — and have it have some value? Timing and all of that is — it would
need to be timely, and I think you would want it to come out before this April
15 study. I think it would have to be pretty high level.

My other concern is that I think the stakeholders of this committee, who are
growing daily, probably are looking to the committee to at least make some
observations related to this rather visible report in an area that, although
more technically in depth than typically we deal with, certainly an area that
the committee is very involved with.

So I think if we could put something together, again, I would support it,
and I don’t see any problem with it.

DR. CARR: I am going to get Jim’s input, but I think the issue is which
question we address. I think what we’ve heard around the table are the comments
if we do this. I think the controversial would be should we do this, and I
think we can limit ourselves to if we do this, these are the benefits we see,
these are the challenges we see.


MR. SCANLON: Same thing. I think there is no issue with commenting on
another FACA report, but remember, our comments are to the secretary, they are
not to the PCAST.

Again, it sounds like clearly there is an interesting vision here, and I
think the goals are quite similar. I think they’re trying to get to the same
place as more traditional EHR approaches. But the approach is quite different.

You may want to focus on goals and questions, actually. I don’t think you
want to pan the vision or the goals. You probably agree with them. But it’s a
matter of how would this work and how would it build upon current capacity.
Where is it? Is anybody doing it now? And is there some other industry that we
can learn from? But those are the kinds of — I think higher level thoughts and
questions and analyses will be more helpful than mechanical tweaks at this
point, just because it is so broad a framework.

DR. CARR: Walter and then Leslie.

DR. SUAREZ: I think procedurally my suggestion would be — I can see the
letter having some high-level comments that cut across all topics, and then you
can have a selected set of comments related to, for example, standards — we
can help draft those — privacy, population, and quality if that’s the case. So
I think we can create a letter that has some overarching comments in the front
part and then the various comments from each of our respective groups.

DR. CARR: Leslie?

DR. FRANCIS: I really like the way Walter framed it in his comments a minute
ago about policy coming first and reminding the secretary of some of the core
policy questions that NCVHS has been interested in, as a frame of a way to look
at it.

DR. CARR: Mike?

DR. FITZMAURICE: If we do a letter, I would suggest that one of the
recommendations to the secretary is that we need a thoughtful proof-of-concept
study because we don’t know everything that we need to know about this, one
that generates a list of things that we need to have to obtain this improvement
in our health system, like what data standards, what privacy profiles, what is
the governance desired in privacy, in standards? What needs to be governed, who
should do it, what is the government’s role?

Coupled with this we need a pilot study that follows on the proof-of-concept
study that implements this concept in two or three places that exchange data,
with a section of this pilot study that speculates on what happens to costs and
benefits of such tagging technology as we multiply it by 10, multiply by 100,
so that we can get some lessons for the whole economy.

DR. CARR: Okay. So to wrap up — I’m sorry, did you have one other comment,

DR. OVERHAGE: I’m sorry, thank you, just one thought, and that is it seems
to me that there are a couple of areas that we might want to make observations
about related to population health and the implications for a model like this
for population health, since that’s one of our major remits, and I think there
are many potential implications there.

The other thought is that I see that one of our roles is to be looking out,
down the distance. ONC and many other organizations have near-term deliverables
and deadlines, and tomorrow this rule has to be out, next week this has to be
done. We sometimes have the luxury of taking a little bit longer view and
putting it in that context. I think it speaks a little bit to Mike’s point
about — I might even ask the question, when is a good time to be doing those
things? Is it today, given everything else that’s on everybody’s plate, or is
it tomorrow? Building on Larry’s comment, perhaps, let’s get some of the things
done that we’ve started on and hope these things are — but that would be a
decision that —

DR. CARR: Chuck?

DR. FRIEDMAN: Thank you. Just to second Marc’s point, I recall some
statements in the early parts of the PCAST report that go to the fact that they
saw as key to their mission from the outset creating a vision of
interoperability and data liquidity that would specifically support population
health and research and the other quote/unquote secondary uses. So that would
be very appropriate and very much in line with their original intent in doing
the report.

The second point I would make very quickly. If you were going to produce
this letter, I would think it would be very helpful to have it arrive
coordinated with the time line of the ONC PCAST work group report, so all of
this input flows forward in a synchronized way.

DR. CARR: Yes. That’s great.

DR. SUAREZ: What’s that time line?

DR. FRIEDMAN: Mid-April.

DR. CARR: We are going to draw this conversation to a close. I want to
summarize what I think I’ve heard, that we will have a letter to the secretary,
that we will be focusing more on, if we do this, these are things that are
benefits, these are challenges, this is aligning, focusing on areas of
alignment with the committee, particularly our interest in population health.

The way we will do this, I would suggest that the subcommittee chairs build
on what you’ve already got, and I think it is really quite good already, and
maybe some discussion today, and we could put together — perhaps then work on
a draft and then use one of our designated Friday conference times to review
and discuss and refine.

I want to clarify, Marjorie, if that executive subcommittee group works on
it, then the next step would be to circulate it to the full committee? So we
would be working electronically, obviously, because our next meeting isn’t
until June. Then with the agreement of the majority of the full committee, we
would move the letter forward?

MS. GREENBERG: Well, we would need to hold a teleconference that would be
open to the public and announce it on our website et cetera for the committee
to discuss the letter and vote on it.

DR. CARR: Okay, great.

MS. GREENBERG: Now, I think we are going to need — you know what it’s like
writing a letter by committee. Somebody is going to have to take the lead on
writing this, I think.

DR. CARR: Yes.

MS. GREENBERG: I think there is input from everybody. At this point I don’t
know if we have a staff person who is knowledgeable enough about this
particular area who is coming forward to do this. Are there any volunteers?


DR. FRANCIS: I will certainly help. I cannot do the —

DR. CARR: And Matt has volunteered.

MS. GREENBERG: Okay, our standards guy back there.

DR. CARR: That’s standards, quality, population, multidisciplinary
expertise. So Matt will be the point person then, and then I think we’ll go
from there. Thank you, Matt.

MS. GREENBERG: Thank you, Matt.

DR. CARR: Final comment, Walter.

DR. SUAREZ: Yes, just one kind of quick logistic suggestion. I think we
should set out some date by when co-chairs of the subcommittees should send
their draft, decide the comments we want to insert. Then there will be some
overarching comments outside of those that have to be crafted.

DR. CARR: I would ask that today you put to paper what you have said, and
hopefully we can soon get a transcript, pretty soon. But let’s just try to put
the bullet points together today:

• What is the alignment with NCVHS?

• What do we find as the strengths?

• What do we find as the challenges?

If we just start with that, I think that would be good framing, and then we
can give whatever form you have to Matt, who will work on it.

DR. SUAREZ: But we do have until April, roughly mid-April.

DR. CARR: We will come out with a time line as well.

DR. SUAREZ: We can stretch a little bit the time line, too.

DR. CARR: Yes.

Okay, moving right along, next on our agenda is you again, Walter. Standards

Agenda Item: Standards Letter – EFT Operating Rules and

DR. WARREN: If you will bring up the letters, the way Walter and I decided
to do this is I will give you overview comments and then I am going to run to
the laptop and take notes, and Walter is going to take us through

Our letter is on tab 5. This letter has had quite a bit of work done already
by Walter, Lorraine, and me, with the help of Margaret A. We then had committee
responses to the letter and a phone call with the committee, and then also the
Executive Subcommittee has looked at it.

What you will see under tab 5 is the letter itself, and then you will see
the agenda that we had for the hearings, and then after are briefing booklets,
so all the exquisite details that you would like to know about the standards
and their impact and stuff is in the briefing booklet. That briefing will be an
appendix attached to the letter.

In the letter, we have our basic introduction to the secretary laying out
what our task and charge was by the PPACA law. Then we came to an agreement
that we needed to make some overarching observations, because this is the
second time that we’ve made recommendations about operating rule entities. So
there were some patterns that were beginning to evolve that we did not want to
miss, so that we could see whether or not they held true for the rest of the
standards that we are going to have to designate operating rule entities on.

You will see that we have three observations that are there. We then made
some comments about the electronic funds transfer. This is the first time where
we are going outside health care to look for a standard. The standard comes
from the banking industry, so a really new area for NCVHS to follow, and in
fact we do have some representatives here from NACHA; that is, the organization
that develops the standards. So if there are clarifying comments, we have some
experts in the room.

We made some comments about that, and then you have our actual
recommendations about what should happen and then a call out for — part of the
law, if you remember, is that the operating rule entity has to submit us the
operating rules for us to evaluate. So the last couple of paragraphs there of
the letter address that.

With that, I will let Walter make some comments about our recommendations,
and I will run to the laptop.

DR. CARR: Great, thanks. And, Walter, maybe you can start by reading what
was the assignment from the Affordable Care Act, just for the record.

DR. SUAREZ: Do we have that in the letter?

DR. CARR: Yes, it is in the letter.

DR. SUAREZ: It is in the first part of the letter. So the introduction, and
then I don’t know that we need to read word by word this first page, but the
assignment — and this is again, Judy was mentioning, this is the second in a
series of letters out of the Affordable Care Act. Specifically, the assignment
was to — I am looking for that —

DR. CARR: A, just start with A, B, C, D, E.

DR. SUAREZ: Oh, thank you. I’m sorry.

So advise the secretary whether or not a nonprofit entity meets the
requirement for the operating rules development, review the operating rules
development recommended by such entity so that the actual operating rules, we
need to review them and make an assessment and make a recommendation about it.

Determine whether such operating rules represent a consensus view of the
health care stakeholders and are consistent with and do not conflict with other
existing standards.

Evaluate whether such operating rules are consistent with electronic
standards adopted for health care information technology.

Then submit to the secretary recommendations as to whether the secretary
should adopt such operating rules.

These are the Affordable Care Act tasks related to operating rules.

Now, as Judy mentioned, we divided the letter into those three sections she
highlighted. The first section, which starts on line 81 — and the previous
sections are really noting some background information about EFT and ERA, and a
lot more background about it is provided in the environmental assessment that
would be part and attached to the letter.

If we want to go into the overarching observations, I think we can highlight
those. Again, it starts on line 81. That’s the first section of the letter. We
highlight on line 85 basically that there is value in establishing an active,
open process that ensures communication among authoring entities and between
authoring entities and standard-development organizations.

This is one of the first and probably most important observations after two
rounds, if you will, of this new experience of evaluating and recommending
operating rules, the fact that there are going to be authoring entities, some
of which might be a standard-development organization, some of which might not
be a standard-development organization. So that is one group, authoring
entities of operating rules.

Then there are the standard-development organizations. If you recall, in an
earlier letter, in the previous letter, we recommended that authoring entities
be made part of the DSMO, the designated standard maintenance organization
group, to facilitate that communication. It seems that that might not be
necessarily the best vehicle, incorporating the authoring entities into the
DSMO, so we are now looking at an alternative way to convene and to facilitate
and to foster this communication between the authoring entities of operating
rules and the standard-development organizations to ensure that there are no
conflicts before the operating rules are written and completed, and that the
standard ultimately incorporates any issue that might have been identified in
the operating rule development process, because that is truly the cycle that we
want to see, less need for operating rules, if you will, and much better
defined standards and less need for having to create these operating rules that
clarify the standard or that create ways in which the standard is to be
adopted. The standard should be the one that has that information in it.

So that is one aspect of the next step that we see, that we need to really
look at establishing this active process. We are thinking, and we will be
talking about this probably tomorrow as part of some of the recommendations of
what we will be doing this year with the work of the subcommittee and how we
can bring these two groups together in a more harmonious way. That is the first

The second observation starts in line 94. “There is a transition path
that needs to be recognized for health plans and providers to prioritize and
plan for applicable investments in technologies and processes that will support
new standards and their operating rules.” Again, clearly, here what we are
finding is that there is still a degree of optionality in the standard that is
making it more difficult to adopt and implement in a very standardized way
these administrative transactions. So we are looking at improvements in the
standard by reducing the variability. It is going to enable better use of that
standard transaction.

Then the third high-level observation starts in line 102, page 3 at the top:
“There is value in ensuring consistency in certain aspects of operating
rules across all transactions.” Here the concept is the following: There
are nine transactions at this point, and there will probably be more
transactions — 10, 11, 12 transactions over the next 3 or 4 years. If we
create operating rules for each of those transactions, and there are some
components of those operating rules that really apply to all the transactions,
and those components are different from one transaction to another, it will
create a much more complicated implementation process.

So we are highlighting the need, the fact that there is a set of standard
operating rules that apply really to all transactions or that would likely
apply to all transactions, and that consistency in those operating rules will
be very important. That’s what we are highlighting as an observation after this
second round of experience with the operating rules.

Let me stop there and see if there are any questions or comments or
reactions from the observations.

(No response)

All right, let’s continue.

Line 111, starting the second part of the letter. I want to make a point
that the charge for the second round was to identify a standard for EFT, the
electronic fund transfer, number one; and number two, the operating rules for
EFT and ERA — those were two different tasks, the standard for EFT and the
operating rules for EFT and ERA. The second part of the letter focuses on the
standard for EFT. The third part of the letter focuses on the operating rules
for EFT and ERA.

With respect to the standard for EFT, we have in line 114 through the
remaining of this page a description, a discussion about the standard itself,
the way that EFT occurs in health care. We provide that background, the fact
that there are basically two formats in the current transactions, something
called CCD+ and another called CTX, the main difference being that the CCD+
provides for a transmission of basically the monetary information plus a
re-association key, a multi-digit re-association key, that gets passed from the
health plan to the health plan’s financial institution, from the health plan’s
financial institution to the provider’s financial institution, when the
transfer of funds happens, and then from the provider’s financial institution
to the provider. So that re association key in the EFT allows the provider to
link back the money that came in with the —

DR. CARR: Would it be helpful to refer people to the diagram picture?

DR. SUAREZ: You have a diagram?

DR. WARREN: Yes, it’s on the last page of the briefing booklet.

DR. SUAREZ: Oh, thank you.

DR. WARREN: Justine wanted a picture, so we brought a picture.

DR. SUAREZ: It’s in the last page of the briefing book, page 19? No? I am
not sure —

DR. CARR: I think actually there’s another one on page 7 for beginners.

DR. SUAREZ: Yes. The one on page 7 is the one that kind of mentions that

So there is the CCD+ and then there is the CTX. The CTX is, just in rough
terms, basically the health plan sends a copy of the remittance advice itself,
with all the details, including personal health information, of course, to the
banking institution of the health plan. The banking institution of the health
plan is expected to pass that to the provider’s banking institution, and then
that comes down to the provider. That is the CTX format.

Lots of discussion during the hearing about the differences, the current use
in health care of the two formats, basically highlighting that pretty much CCD+
is the most —

DR. CARR: Again, Walter, because I know you dwell in this area and it’s
intuitive to you, but I really think for the full committee to understand this,
I just want to be really kind of a little bit slower on 7.

DR. SUAREZ: Okay. Well, let’s go through the recommendation.

DR. CARR: No, just to get — so the key thing that you’re saying is where
does the — does the sensitive health information travel separately or

DR. SUAREZ: Yes. The difference between CCD+ and CTX is that CCD+ doesn’t
really transmit any protected health information from the plan to the banking
institution of the plan, to the banking institution of the provider, down to
the provider, because the re-association key allows the provider that receives
the deposits and the fund transfer information to go back and link that
information with the remittance advice that the health plan sends directly to
the provider. The remittance advice is a separate transaction from the EFT.

That is the main difference, I guess, between CCD+ and CTX. Again, for the
most part, what we heard during the hearing was that CCD+ was the main approach
currently being used.

The recommendations on line 154 start — we make five specific
recommendations. The first recommendation is, as always, with all the other
HIPAA transactions, we have to recommend a definition of the actual
transaction. If you recall, in all the other HIPAA regulations for all the
other transactions, we defined what a health care claim, an encounter, is, or
what a health care claim payment is as a transaction. So we are recommending
that the secretary define the health care EFT transaction as it says in line
156, “an electronic message used by health plans to order, instruct, or
authorize a depositor financial institution to electronically transfer funds
through the ACTH network from one account to another.” That is the
recommended definition of an EFT transaction. Not yet the standard. The
standard comes next.

Now, the source of this definition is primarily the definition being used in
the current 835, the current electronic remittance advice standard, which
defines an EFT transaction as basically this. There might be some wording we
might need to consider, depending on what we hear, but that is basically the

The second recommendation is about defining the EFT standard. We are
recommending that the EFT standard as the format and content required for
health plans to perform an EFT transaction — I am sorry, we are recommending
that the secretary define the health care EFT standard as the format and
content required for health plans to perform an EFT transaction. That is a
statement about the need to define what is the EFT standard itself.

Then 1.3 and 1.4 and 1.5 define the standard format, the standard
development organization that develops that standard format, and then the
implementation specification. 1.3 recommends the secretary to adopt as the
standard format for the health care EFT standard the NACHA CCD+ format in
conformance with the NACHA operating rules. 1.4 recommends the secretary to
identify NACHA as the standard development organization for maintenance of the
health care EFT standard. 1.5 recommends the secretary adopt as an
implementation specification for the content of the standard being recommended,
CCD+, the implementation specification described in the 835 transaction,
basically, the electronic remittance advice.

We added a statement at the end of this 1.5 that it is acknowledged that
there are other forms of EFT, including CTX, which are not widely used in the
health care industry, and this may be something to be considered in the future,
these and others that might come out as standards for formatting content into
the future.

So that is the core of our recommendation with respect to the standard
itself. Let me stop there and see if there is any question. Yes?

DR. STEINWACHS: Just so I am clear, on that last statement about these may
be considered in the future, is what is being said is that in the future there
might be one standard used or that there might be a switch?

DR. SUAREZ: No. That is one of our roles, defining the Accountable Care Act,
and one of the roles of this process is really to evaluate now every 2 years,
at least, how the standard is doing and whether the current standard is the
right one or there should be a different one to be adopted. This does not mean
that we are in the future going to add another standard, but we are going to
evaluate the current standard.

DR. STEINWACHS: My suggestion, for what it is worth, I would probably take
that out of the recommendation. You may want to remind the secretary that every
2 years you are looking again at these and coming back.

DR. CARR: And I think, given that we’ve set out A, B, C, D, E, I think if we
had some symmetry in responding to A, advise the secretary, this is what we are
advising; B, review the operating rules developed. Well, today, we don’t have
the operating rules, right?

DR. SUAREZ: Yes. Those A, B, C, D, E up above are all related to operating
rules, really. Those are the responsibility that we cover in the third section
of the letter.

DR. WARREN: I would like to respond to Don’s comment. When you look at the
NACHA standard for EFT, there are different formats in the standard. So we are
recommending the standard, and we are only recommending one of two formats. So
what we’re saying is in the future when they’re being reevaluated, there may be
other formats that we look at again and recommend. So it’s not a standard that
could be changed. The standard is the same. It is the format within it.

One of the solutions that may make you feel better is we could put that in a
footnote, that one sentence, and that may make it clearer. But one of the
problems that we had, and you will see it in our recommendation of 1.1 and 1.3,
is NACHA defines standard differently than the other health care SDOs. So what
we are trying to do is do that bridge.

So, for them, it is the format that conforms with the standard. The standard
is something else. So we are trying to be a bridge so that we use the words in
a way that we’re familiar with.

DR. STEINWACHS: That does help, and I appreciate it. You might take the two
sentences and put them in a footnote. It sort of sounds like you’re justifying
this mainly because the other things are not widely used.

DR. WARREN: So if we drop that down to a footnote and say, “per the
law, we will reevaluate this”?


DR. WARREN: All right.

DR. STEINWACHS: I think that would be a strong message.

DR. WARREN: All right.

MS. DOO: Judy and Walter?

DR. WARREN: Take this part, Don —

DR. SUAREZ: It sounds like Lorraine —

DR. CARR: Are you finished, Judy?

DR. WARREN: I just want to be sure. It is these sentences, Don, that you’re

DR. STEINWACHS: Yes. I would just make the recommendation the
recommendation. Take the comment out of it and put that elsewhere.

DR. CARR: We have Lorraine and then we have Mark. Lorraine?

MS. DOO: Thank you. I know I’m out of order, but I can’t see the hands.

The one thing that I wanted to mention, at the beginning of our letter —
and it might be something you want to consider adding — because the operating
rules are not available yet and we are just evaluating the potential
candidates, I thought you might want to think about putting something in, that
the reason we’re focusing on the standard here is because we’re in the process
of evaluating the operating-rule authoring candidates and that that would be a
separate letter that would come in the next 6 weeks or something.

DR. CARR: I agree. Because this is so complex and not familiar to a lot of
people, I think, to the extent that we can tick and tie what we were asked to
do, what we’re doing and in some cases what we’re not doing and why, it will be
very helpful.

DR. SUAREZ: Yes, that’s a very good point, Lorraine. I think what is missing
from the intro — again, we are focusing the intro only on operating rules
primarily because we borrowed, I think, from the previous letter which was only
focusing on operating rules. But the Affordable Care Act provides for NCVHS to
evaluate and make recommendations on an EFT standard, not operating rules, the
EFT standard. That should be added in the first portion of the letter, that the
Patient Protection and Affordable Health Care Act calls for NCVHS to make
recommendations on the EFT standard, and then make recommendations on the
operating rules.

Then on the third section of this letter, we clarify why we are not in this
letter making recommendations on —

MS. DOO: Exactly.

DR. WARREN: So if you look at the highlighted standard, this is right under
our charge in the law, and I think this does what you’re asking for, Justine.
“Based on the above, this letter is another in a series we are writing
concerning the new changes to the committee for recommendations on operating
rules, in concert with our existing responsibility to advise the secretary on
the adoption of standards. Our first letters were on the health plan identifier
and operating rules, and all three entities for eligibility and claim status
were sent to you on September 30. This letter addresses transactions for
electronic funds transfers specific to health care use and health care payment
and remittance advice, commonly referred to as electronic remittance

So does that handle —

DR. CARR: I see it.

DR. WARREN: I think we have to go back and make sure that —

MS. DOO: A future letter will address operating rules for EFT and ERA once
the evaluation of the candidates is completed.

DR. SUAREZ: I think what we need is, in line number 25, where it says,
“Specifically with respect to operating rules,” we need to insert a
new sentence that says, “Specifically with respect to standards, NCVHS was
tasked to recommend an EFT standard, and with respect to operating rules, NCVHS
was tasked to” — A, B, C, D, E.

MS. DOO: And it does look like it’s around line 187, is where we talk about
doing it going forward.

DR. WARREN: Right. So all I am going to do right now is capture in red that
we need to insert a sentence there about the standards. I do think that that’s
the right place. Then the paragraph below our direction in PPACA will cover the

What I am wondering is, based on your comment about the complexity, if we
also need to put in here right before our observations that this letter has
three parts —

DR. CARR: I was just going to say that.

DR. WARREN: — general observations, the standard, and then the operating

DR. CARR: I think that would be very helpful.

DR. SUAREZ: I think that would be good.

DR. CARR: I think just carrying through what we were asked to do, this is
where we are in our assignment and this is what we’re doing and what we’re not
doing would be very helpful.

DR. WARREN: We’ve already got it, believe it or not, right here.

DR. CARR: And it may be, yes, just formatting it and kind of getting it —
go ahead.

DR. WARREN: Maybe a header here?

DR. CARR: Why don’t we work on — I want to make sure that we get all the
content. Mark?

DR. HORNBROOK: Two questions. One is do we need to worry at all that the
account label could have PHI in it, that it’s Mark Hornbrook’s account or it’s
security number XYZ account? First question.

The second question is are we dealing with also transfer from my bank
account to my provider, my individual electronic funds transfers, or is this
only —

DR. SUAREZ: No, it doesn’t. To the second question, it doesn’t deal with
that, no.

DR. HORNBROOK: That’s a whole separate world?

DR. SUAREZ: As a patient, you mean? Your bank account?


DR. SUAREZ: No, this is — any exchanges between a patient, a consumer, and
anybody else, whether it’s a direct payment to a provider or a health plan
paying the patient, that’s not subject to any of this.

DR. WARREN: However, though, Mark, it is covered by the same standard for
the banking industry. So it is the banking industry’s job to make sure that
your data is not compromised, but it is not health care’s job, because your
personal account is not part of this.

DR. CARR: Wait. But with what we send them, we’ve made the decision that we
are decoupling —

DR. WARREN: No. What Mark is worried about is if he is making a payment to
his provider, does his provider get the information about his banking account?
We have specifically said that was not part of this task. It is only when a
health plan pays it, and it is the health plan’s bank that gives it to the
provider’s bank. That’s where that information is passed.

In the two formats, we have one format that has the data about the money
piece and a re-association key to the PHI. That is the format we are
recommending. There is a second format that includes PHI that had all kinds of
implications on whether or not banks became covered entities. So we chose at
this time, especially since no one was using that format, not to recommend that
format. But we held it open that in the future we may look at it again.

DR. CARR: You mentioned that we have experts in the room. Is there any input
we’ve gotten from the industry that we want to hear about?

DR. WARREN: Go ahead.

MS. ESTEP: This is Jan Estep from NACHA, and I appreciate the opportunity to
speak for just one minute, because I had a couple of quick observation that I
think link into the comments just made, as well as, then, a couple of ideas
relative to the recommendations themselves.

Certainly the legislation calls out the need for the secretary to define an
EFT standard, and that’s what we’re focused on right now. I think it is less
clear that the legislation asks to define the EFT itself and/or it is not clear
exactly where it says that EFT will be a HIPAA transaction.

So I think there is clarity that perhaps we can offer again as we’re trying
to bridge the health care industry to the financial services industry relative
to recommendation 1.1, because we not only tried to clarify it in our testimony
in December, but the Kaiser testimony also called out that the 835
implementation guide definition of EFT was not accurate. So I would hate to
promulgate a letter using a definition that is potentially inaccurate, and I
would like the opportunity, if you can define our organization as an expert, to
raise up a definition for consideration of the subcommittee that is different
than 1.1.

In a related area — and again to comment on Judith’s comment — I think the
definition will help further discussion, because the definition has to include
the full transaction, not just one part of it. So it is not only the payment
order from a planner or a provider to their financial institution but it’s the
whole transaction.

Again, EFT is the funds transfer; it is not just the order or the advice. So
if we consider a more robust definition that can be inclusive of all the
parties that are involved, I think it will be helpful.

With that regard, ACH, as Judith called out, is one of the EFT options laid
out in the 835 implementation guide and the 835 definition, along with other
electronic payments that are called out in (interference) 114(?) in the letter.
But if ACH is the standard and CCD+ or CTX are the format choices underneath
that, I think that then has implications for recommendations 1.3 and 1.5,
whereby I would ask that, as opposed to limit payment or format options, which
were asked for in the testimony, that the committee consider actually
recommending a pilot along with a refined definition of EFT that would allow
for CTX or CCD+ when a provider chooses to use that, because that was a clear
call-out in the testimony. I think, along with an enrollment utility, it would
provide for the standardization that we are looking for and efficiency.

So there are three sub-recommendations.

DR. CARR: So guide me. I have to look to the co-chairs.

DR. SUAREZ: Can I ask one question? What is the recommended definition of
EFT transaction? We have to provide a definition of what the EFT transaction
is, to be incorporated into the regulation, just like there is definition for
every other transaction under HIPAA.

By the way, this is going to be under a HIPAA transaction because it is
incorporated into the HIPAA section of the public health law.

MS. ESTEP: I think we can discuss where is that requested, and again, it is
one of my question marks, just having viewed the letter today. But the
definition is one that I could assist with during the subcommittee tomorrow,
because right now the definition only talks about one piece of the transaction,
not the whole transaction, and that could cause, I think, problems into the

DR. WARREN: We made plans that they’re going to attend our breakout tomorrow
morning, and we’ll work on the definition then and bring it back to the full

DR. CARR: All right. Are there any other comments, suggestions?

I think with that we will break —

DR. WARREN: No, we’ve got a third section.


DR. CARR: Keep going, then. We will continue.

DR. SUAREZ: We can do that in 3 minutes.

DR. CARR: Go ahead.

DR. SUAREZ: Line 187, page 4, is the section 3, which is the observations
related to operating rules of EFT and ERA. I have to mention, as part as our
process, we have to first identify who are the authoring organizations of any
operating rules and then what are the actual operating rules that are being
proposed in order for us to make recommendations to the secretary to adopt
operating rules and name a specific entity to be the authoring entity.

At this point we did not clearly have recommendations for operating rules,
and so instead of making any recommendations in the letter, we are making some
observations, primarily that the observations are basically that we will be
requesting potential operating rule authoring entities to present their
applications to be authoring entities for operating rules for these two
transactions. Then they will be reviewed by NCVHS and make recommendations
about them.

That is what you heard earlier this morning from Lorraine, that we have
already received three applications from entities that want to become authoring
organizations for the operating rules for EFT and ERA. That step has already
kind of moved forward and started happening. But that is why in this letter we
are not making a recommendation to adopt a particular operating rule; we are
making a recommendation to — we are basically informing the secretary that we
are pursuing the process as it was delineated in the regulation of identifying
authoring entities and then requesting those authoring entities to develop the
operating rules and provide those to us.

DR. WARREN: And to designate the EFT as a HIPAA transaction standard,
because there were no transaction standards identified or recommended before.

DR. CARR: Questions, comments?

(No response)

Any closing comments, Walter?

DR. SUAREZ: No. I think that tomorrow, as we mentioned, we will be meeting
as a subcommittee. We will be aligning some of these elements. We will hear
some more about this potential — we will bring back —

DR. CARR: We will have a very tight time line, because the subcommittee is 8
to 9, and the meeting starts — is the subcommittee —

DR. SUAREZ: We will have a final letter for adoption by the committee at 11
I think is when we have.

DR. CARR: All right. I’m happy to help.

DR. SUAREZ: We’re meeting tomorrow morning from 8:30 until —

DR. CARR: So we break for lunch, get back on time, 1 o’clock, and we have
the quality letter and then a report out from yesterday’s hearings. Thank you
very much.

(Whereupon, at 12:00 noon, the meeting recessed for lunch.)


DR. CARR: Welcome to the afternoon session of the NCVHS. We will start off
the agenda with a review of the quality letter.

Blackford, take it away.

Agenda Item: Quality Letter – Quality Measures Roadmap

DR. MIDDLETON: Actually, Paul was going to do the intros, but hopefully he
is having a nice extended lunch. Allow me to remind you of what we were doing
with the quality letter, which began in the fall of last year with our
testimony from a variety of stakeholders in quality measurement and quality
management across the country and across the continuum of care, if you will.

The key questions we were trying to address were these:

• What is the issue we are trying to address?

• Why did we choose this issue?

• What did we hear from various testifiers?

• What are we recommending, and why?

• What are the areas of controversy.

The key issue we are aiming to address is that, really, the essence of
quality measurement is going through dramatic change, I think, as we think
about the adoption of HIT and the acquisition of data from a much more wide
variety of data sources and the like.

We wanted to look at the future of quality measurement and examine the
activities necessary to support both medium-term and longer term stakeholders
in their assessment of quality: consumers, specifically; providers, of course;
professional organizations and accreditation organizations, and regulators; and
payers and group purchasers.

So we had those four stakeholders in mind, and we wanted to, based upon
their testimony, try to outline a quality measures development roadmap to take
advantage of the changing IT infrastructure and world.

We will tag-team this a little bit.

DR. TANG: Why did we choose this issue? It is because it is so important to
actually getting, of course, the care out in the first place. So it should be,
above all, meaningful to the folks that are working with patients as partners
for high-quality care in order to better help; and that there are more sources
of data available electronically, not just on these pieces of paper, through
PHRs, for example, so you can get information directly from patients
themselves; and that, clearly, not only is reform more focused on quality but
also payment is going to be more focused on the output of the quality measures

Right now, the committee did not feel that the current measures do much to
take advantage of this new source of data and the richness of the data that is
available. So that is the motivation.

So what did we hear? It started out, actually our first panel was consumer
representatives. The overriding messages were, You know what? The current
measures actually don’t give me, the patient, what I need to make decisions
either about my care or about the people I work with, my health care providers.
So that seemed like a pretty decent challenge.

So we figured that we needed to shift the paradigm to something that is
measured just because it’s there, the old administrative and claims data. It is
something that we would want to know about. That is a whole big shift. Health
reform really gives us both the motivation as well as reinforcement of being
able to use better quality measures. So that is the basis for our

So what are we recommending? The first is what I alluded to, which is to
say, Let’s make these measures something that consumers and patients would be
interested in, and providers would also be interested in what they do and how
well they do at this.

The reason for recommending that is that the current measures lack the
relevance to consumers. For example, we have these risk-adjusted quality
measures, and they apply to the, quote, average patient. So we normalize it to
try to make the average patient. Well, none of the patients actually feel that
it applies to them, and that is legitimate. As an example, you would rather
have something that was stratified so I can see where I fit in and whether that
care would be appropriate to me.

Consumers also want to know about — well, that’s the third point. It also
doesn’t take advantage of the emerging models for care delivery, like the
team-based care and the emerging sources of data, as we mentioned.

So the request is let’s move towards quality measures that have much more
relevance to the individuals they pertain to, consumers or patients, and that
use the broader sources of information that can apply to that. Make it and
display it, render that information gained through quality measures in ways
that I can understand how I as a patient am affected.

DR. MIDDLETON: The second area — maybe what I will do is just highlight all
four areas and we can go into each one individually. The four areas are the
consumer’s perspective, the value perspective, accountability and care
coordination, and then a systems perspective on efficient acquisition and use
of health care data for quality.

Moving to the second area, focus on health care value, as Paul has alluded
to, and as we know from the health care reform efforts, there is extraordinary
pressure on demonstration of value in health care. Building upon prior
experience in pay for performance and managed care and capitation, et cetera,
we believe there has to be more attention to defining measures of health care
value itself, starting with better assessment of cost, relationship of cost and
charge, and understanding value in the broadest way, defined as quality over

The recommendation is to fund research and development of improved
assessments of the value of health care based on measures and information about
cost and quality that are relevant to all health care stakeholders. We had
everybody — consumer, provider, accreditors, regulators, et cetera — giving
testimony during the hearings.

The reasons are it is clear, as Paul has alluded to already, from the
consumer-centric point of view, consumers and purchasers want information and
transparency about cost and quality to inform their health care decision
making. What does it really cost me to have this knee procedure or this other
whatever? Providers need information and measures to assess evidence-based
decision making and continuously improve the quality of care and optimize
health care costs.

As we think about care redesign, optimization of care and prevention of
unwarranted costs, we basically need, of course, to know how to measure costs
and value correctly.

Further, payers need methods to assess the value of health care services and
health care system efficiency so they can optimize plans and payment mechanisms
for care rendered and being delivered. Inconsistent definitions and methods are
used to assess value currently. There is a lack of consensus on how to measure
cost of care. Cost information needs to be transparent. It also needs to be
shared within the context of quality across the continuum of care.

The next area, we heard a lot about emerging models, new models of care, new
sources of data as well, but of course health care reform is pinning a lot of
expectation and hope on improved understanding of accountability and new models
of care that more tightly ally patients to providers and, hopefully, optimize
care in the medical home-type models and accountable care organizations and the

We believe, though, there are not yet adequate measures or sufficient
measures to make assessments of accountability in care coordination. So the
recommendation is to fund research and development to provide information and
measures which enhance the ability to assess accountability and care
coordination in health care.

Reasons: New measures and information is needed to capture information
valuable to consumers to hold the health care system accountable for things
important to consumers. We need a core set of measures that can be used to
compare performance between health care systems and ACOs. And if systems,
providers, or ACOs are to be held responsible for the health and wellness of a
cohort they become accountable for, a reliable and transparent method is needed
to track patients across delivery settings and episodes of care.

DR. TANG: The final recommendation out of the four recommendations really
builds upon our meaningful measures kind of hearing and sets of
recommendations. That says that in order to produce better measures that are
coordinated, that more efficiently take advantage of resources, of people
developing measures — that is, less rework and also less burden on the care
provider — we all ought to work together. There should be a coordinated effort
to have everyone in the measures-development and use supply chain work
together. I think they individually would like to do that as well.

But there is no convener of that. AHRQ convenes the clearinghouses, for
example, and NQF convenes some of the measure developers, et cetera. But there
is no convening function to make sure that we all align our efforts but also
the underpinning infrastructure, leverage the same infrastructure, whether it
is the data, the standards, the definitions. That would be enormously
beneficial to everyone.

So our recommendation is that someone — and possibly the government or
public or private sector — convene the quality measurement stakeholders to
formulate the strategy and in this way coordinate our efforts.

So that is the final recommendation.

DR. MIDDLETON: Some of the most powerful testimony actually we heard was
maybe the consumer side of things and then very powerful testimony from Artie
Milstein on this idea of coordination of measure development and exploiting the
data that is in the pipeline already in various places so it is gathered once,
reused many times, a common NCVHS theme, and it would become more efficient at
data acquisition and data reuse.

What are the areas of controversy? For those of you who were in the room and
had the benefit of listening to the testimony, it felt at the end of the two
days kind of like a fundamental paradigm shift, not that we haven’t talked
about patient-centered care or patient-centered measures before. But to really
think about what that actually means from the patient’s point of view, we felt
like we were really trying to acknowledge and spur on a paradigm shift from the
current system, in which regulators and payers drive measure development, to a
much more patient-centric — whatever the right words are for that patient
point of view.

So that is fundamental, and that is going to be central, I think, going
forward. I am not sure it is necessarily controversial per se, but it is a
complete shift in orientation.

What is controversial, though, is providers use different measures for
internal quality improvement than for public reporting. Can we deal with a
common set of measures that actually make sense for both? Providers in their
own operations, quality improvement, et cetera, within hospitals and clinics
and systems may be doing one set of things that make sense to them, but it may
be completely separate and oftentimes is completely separate from external
reporting requirements. It would be nice if those could be harmonized and make
it easier for the provider to gather the data which would be used for both
internal and external quality assessment.

How can measures be created to address individual conditions and preferences
without increasing collection burden? This goes back to partly a
measure-development issue but also a system-optimization issue. Make sure that
the data that is relevant to quality assessment, internal and external, is
readily available and itself is harmonized, as well as creating more measures
that reflect more of the different dimensions of morbidity and mortality, and
again from the patient’s point of view.

I hope I am capturing those issues correctly.

We recognize that measurement of cost is controversial no matter who is
measuring it. It is always whose perspective on cost are you interested in
trying to measure, and the value proposition suffers from the same stakeholder
perspective. Stakeholder perspectives can actually dramatically shift the
assessments in many interesting ways.

Are providers wholly accountable for patient care, or must measures actually
be able to differentiate provider accountability, patient responsibility and
accountability in a broader definition of accountability at large?

So we have drafted and redrafted a letter which is in your packet under tab
4. This has been generated by the subcommittee and reviewed by the executive
committee. I will pause now for questions on any of the backdrop, or I will ask
if people have questions about the letter that is in their packages.

DR. CARR: Yes, Leslie?

DR. FRANCIS: This is not a question that is about disagreement so far with
the letter, but it is a question about how radical the letter really is. In
part it is motivated by yesterday’s discussion where the folks from Denver made
quite clear that actually the stuff in clinical records wasn’t top of their
list. What was top of their list was how did I get here and why did I get here,
rather than how am I being managed now.

The reason I ask that is it could be — this is a letter about more
fine-grained to patients in a sense that might be more meaningful to them. But
consider some other measures. How well was the set of possible alternatives,
including no treatment, explained to me? General questions about communication.
That might be something that is extremely meaningful to patients, but that is
not at all on the table as a quality measure in a more fine-grained look at
what are essentially clinical records.

Another question like that might be, to what extent were there efforts made
to elicit my own preferences and to ensure that whatever my values were, they
got embodied in my care? This reads to me like better clinical care, which is
great. I am not criticizing that. But I think it is less radical in terms of
consumers facing quality measures than perhaps some consumers might have
thought about.

DR. TANG: Can I respond? I am not sure where you’re reading that it says
that, because the questions that you pose are included in recommendation one,

DR. FRANCIS: Well, it didn’t feel like that to me.

DR. TANG: So maybe it depends on how radical the reader is, because that’s
what the intent was.


DR. FRANCIS: The question is what types — are we arguing for entirely
different types of measures, or are we just arguing for measures that are more
tailored to a subgroup of patients that this individual falls into clinically?
That distinction I did not see in recommendation one.

DR. CARR: So I have Leslie and Bill and Judy and Don.

DR. MIDDLETON: Let me just follow on Paul’s comments, too, for Leslie’s
great question. I think it is captured. It might be tuned to be more reflective
of actually what we heard. What we heard in the room was that patients don’t
really want to know what the population outcome is for my knee replacement.
What is my outcome? What will actually — can you predict for me when I’ll be
back to work, or can you tell me how much this is going to cost, even?

DR. FRANCIS: Yes, but see, I was actually asking a different question, which
is, did you try to find out from me how much pain matters in comparison to,
let’s say, mobility? Or did you try to find out from me how much I understood
about when to take a medication? Did you try to find out from me whether there
are other stresses in my life so that I need help with something else as a way
to deal with the pain meds that I get?

DR. CARR: Let me jump in, because I think that there is a paradigm shift
here, that we are focusing on the patient’s perspective, and there is a huge
array of things that could be covered in that. Some of them already are, the
HCAHPS or whether you were asked about did you understand your medications, and
so on.

I think, as we heard this morning, there is very dramatic disruption, like
with PCAST — throw out everything and start anew — and this is more in the
incremental — a paradigm shift but work with what we have today. Am I saying
that correctly?


DR. TANG: You are agreeing?

DR. MIDDLETON: Pardon me?

DR. TANG: I think our focus on paradigm shift, all the words we try to say,
is it’s not business as usual.

DR. CARR: Right.

DR. TANG: It’s far more am I going to walk again, am I more likely to walk
again, and how soon with this provider, with this procedure, than the other,
than it is what — I don’t even know what in the orthopod world, what kinds of
measure you have — well, postop complications, things like that. You still are
interested in that as well.

DR. FRANCIS: Oh, of course.

DR. TANG: But the paradigm shift is, it is going to focus on what could be
useful to individual consumers and individual providers than the population.

DR. MIDDLETON: And, Leslie, maybe the last point on this one is the whole
second bullet is all about value, and of course explicit actually in the
discussion there is consumer preferences and their own value tradeoffs, as you
are describing, which are very, very important and not done at all.

DR. CARR: So you’re thematic and you’re more granular I think is what we are


DR. W. SCANLON: I have concerns on a number of levels. I think in terms of
the paradigm shift, maybe I am taking some umbrage from your last slide in
terms of payers and regulators. Having spent a lot of time with the Medicare
Payment Advisory Commission, and we spent a lot of time on value-based
purchasing and pay for performance, certainly it seemed that the focus was on
the patient and what are the outcomes that the patient experiences, or what are
the experiences of the patient; and that the handicap primarily was the
limitations in terms of the kinds of data that were available. Some of the
things that Leslie mentioned would be potentially ideal to include in a
performance measure, but there is this question of where are the data.

I think that is one of the things that concerns me now in that in some
respects what we are talking about in terms of this paradigm shift is a
question of degree as opposed to a total paradigm shift, and it’s a question of
the patient being able to be part of the decision process with a whole lot
more, close to perfect information, which is so difficult to obtain.

I am one who in many contexts argues against averages in favor of
distributions, because I think averages are so misleading, so stratification as
intuitive appeals to me. At the same time, when we’ve been dealing with pay for
performance for physicians, we discover the small-numbers problem very, very
quickly. So we create the situation where we worry about — and I’ve heard in
the last week that in some measures changing four patients changes your score
dramatically as a physician.

So do we want to create an incentive for behavior that we would not value,
which is to exclude certain patients because they are going to affect my
ultimate score? So there is this question of are we going to get the sufficient
data to be able to do what we’re saying here?

Another context in which I worry about this letter is that the department,
in terms of recommendations two and three, is very aware of recommendations two
and three and in some respects are overwhelmed by them and, hopefully, scared
by them, because we are embarking upon changes that are very, very real because
of the Affordable Care Act. We are going to have accountable care
organizations, we are going to bundle post-acute care in a pilot with
hospitalizations. We are going analyze hospitals for rehospitalizations.

There is a question of can we do it well enough in terms of measuring
quality, measuring appropriate risk, and my sense is we have to worry that we
cannot, that we do not necessarily have the measures. If I am dealing with a
vulnerable population, if I am a hospital and my patients when I discharge them
don’t have a usual source of care too often, what is my rehospitalization rate
like? That is something to worry about. Do we have data on those kinds of
things? The answer is very often not.

So it is this issue of thinking about the context in which we’re operating.
I think this is not news to the secretary, but it’s how are we going to fix
these things? The pipeline of data, to me, is the key part here. We have to
increase what is flowing through the pipeline because we can then improve
things that a payer and a regulator who is thinking about patients can do.
Ultimately, maybe we will reach a point in time where we have enough data that
individual patients can use it for their decision making, but I am not sure we
will get there.

I also think about the patient making the decisions in the context of the
health care team. We go around the room at the beginning of our meetings saying
there are no conflicts of interest. Well, guess what? When that health care
team sits down and interprets their data for you, there is an issue of conflict
of interest. So it is not a model that I necessarily think, even when we get
the data, is going to work on a wide scale.

DR. CARR: Are you making a recommendation?

DR. W. SCANLON: I don’t know. I mean no. I have expressed these thoughts
before in other contexts. It’s the issue of where the committee is in terms of
the letter, not where I am in terms of the letter.

DR. CARR: But are you saying that the letter should not go forward or that
there are parts of the letter or it could be reconfigured?

DR. W. SCANLON: Again, I would acknowledge that it is much less of a
paradigm shift and much more a question of trying to enhance what measures can
be used for the benefit of consumers, not necessarily by consumers. I think
that is one aspect of it. That is recommendation one.

Two and three, I think there would need to be more acknowledgment of what is
currently under way in terms of the development of policies that are going to
implement the Affordable Care Act.

The issue of cost, Blackford, you raised this question about whose costs.
That is where I guess I feel like it’s so complicated, it’s kind of dangerous
to get too close to it, because this is one where you could improve your
situation with respect to cost if you went to an insurance company that
bargained harder. That is something from the perspective of what is the cost
coming out of my pocket or on my behalf, between what comes out of my pocket
and through my premium. So there is that.

Then the fourth recommendation, I think the issue is the pipeline, because
convening the stakeholders to work with the same limited resources that we’ve
had in the past I think doesn’t really enhance the evolution of better measures
here. The stakeholders need better data.

There are MEDPAC recommendations saying we want lab values for physician
visits. They’ve been standing there for years. We do assessments now of skilled
nursing facility beneficiaries at points in time, but we don’t do it when
they’re discharged, so we don’t even know what the outcome is. We just get them
at points of time, so there is a recommendation about that.

It is recommendations like that, about where you can intervene in terms of
getting specific kinds of information, that will enhance the potential for
measurement, that I think would be an important addition in the fourth area.

DR. CARR: I have Bill, Judy, Don, and Larry. Did you want to respond to Bill
or shall we just run — let’s hear from the others. We could do that, too.

DR. WARREN: I guess my responses were just to clarify what I heard. So in
number one you’re saying let’s look at what needs to be measured, not what is
easily measured, and interact together and figure out how to measure those and
how to make the data available that Bill is talking about, that currently is
not, right?

DR. TANG: And with the most meaningful perspective being from the
consumer/patient and the provider influencing the payer.

DR. WARREN: Then I wanted to clarify number three. Number three, to me, is
where you’re radical. This is where we are actually talking about coordination
of care, not just the new buzzword coordination of care but all the handoffs
from one provider to another and following that quality through. For me, that
has been the huge gap that we’ve always had, is that nobody pays attention to
what the patient is like on discharge, and then all of a sudden they show up
again somewhere, maybe a doctor’s office or an ER or someplace else, and we
don’t know what they were before. We start all over again with a blank page.

So we are now talking about doing some research to get some indicators for
what those handoffs and the coordination of those handoffs would require. Is
that what I’m hearing? Great. Then I have no problems with this. That’s great.
Then I won’t be radical.

DR. TANG: It’s only a roadmap.

DR. CARR: Don?

DR. STEINWACHS: I started off with a simple comment, and as I hear others, I
have a lot of empathy with what Bill is saying. Let me start with my simple
comment, and then in time I’ll backtrack.

Recommendation four, is that something you would see this committee as
taking some significant role in? You sort of had something at the bottom of
that, but maybe it’s sort of a blanket statement, “NCVHS stands ready to
support the department in accomplishing this goal.”

DR. TANG: I guess it could be a recommendation to the secretary to play a
convening role, to fund somebody to convene this, to somehow cause this
convening to happen with the goal of this coordination and the efficient use of

DR. STEINWACHS: You made the point, Paul, I thought, that there are
subgroups here that get convened.

DR. TANG: Yes.

DR. STEINWACHS: There is not a mechanism about how you convene a larger
group. The only reason I am raising it, I thought if there was interest here,
you might want to think about communicating a desire to take some next steps,
because it doesn’t strike me that this is going to come across as a
high-priority action for the secretary, but I may be totally wrong.

DR. TANG: We thought that was correct, convene quality measures
stakeholders, so you could literally convene this meeting with a certain
charge, to produce a strategy for the nation to come up with.


DR. TANG: One of the anecdotes is on the AHRQ-convened clearinghouses
groups, the idea that they ought to all get together and meet like this, and
the measurement developers meet came out of that meeting. So in a sense, I
think there is a desire on the part of them to have this kind of coordination
so they don’t all reinvent the wheel.

That is also part of the genesis for something Blackford mentioned earlier,
which was the NQF’s quality data model. Gosh, if everybody could reach in and
get the same data elements with the same definition, that would just move
things — you heard that from the public health folks — that would just move
things tremendously along. But that was sort of NQF coming up with its own, by
hearing from the various stakeholders.

So this whole convening function is, I think, desired and asked for and I
think would be a reasonable thing for the federal government to do. That was
the point you had there, right?

DR. TANG: Yes.

DR. CARR: To clarify then, by saying, “The NCVHS stands ready to
support the department in accomplishing this goal,” what did you mean by
that in the letter?

DR. TANG: That might have been written in — I wanted to sort of throw it at
them. I thought that was at the end of every letter.


So I think came with the temper. What I can I say?

DR. CARR: Don, I’m sorry. Did I interrupt you?

DR. STEINWACHS: I was just going to make one point, sort of building a
little bit on Bill. It seems to me my interactions with consumer groups — and
most of those have been in the area of mental illness — many times consumers
say, “Well, why don’t you learn from our experience?” So it comes at,
really, patient-reported outcomes, which Bill was getting at, this question of
how would we tap into those, much like when you get discharged from the nursing
home, as well as, I think, the points that Judy and Bill were making about
other kinds — and Leslie.

It would be great, it seems to me, if at some point this group tried to look
at how could we, peaceably, begin to capture some of that. There is research
going on to actually getting portals built into electronic health records where
physicians request outcomes measurements be reported by the patient, come back.
I think it is a doable part of this, but I think there is a lot more faith
among most consumers and patients about the things that they care about being
the outcomes that others lack from experience.

PARTICIPANT: That is not the case.

DR. TANG: In some sense, this is already happening, and we are actually
catching up in this sense. Tomorrow, a group from the HIT policy committee are
going to decide what to recommend for stage 2 and stage 3, and they include
these patient-captured data, from presumably PHRs, to go into experience of
care — I mean this is already happening. This letter is almost backing up that
we should be working much more in this direction. We should be pointing our —
what is it called, our lens in the submarine?

DR. STEINWACHS: Periscope.

DR. TANG: Our periscope in that direction. That is where the puck is going,
and we’re just putting that down in words in this sentence.

I think it also addresses part of what Bill said, that we can’t use the same
substrate, the same data substrate. We’re saying no, we need to create new
ones, and they ought to be much more relevant to patients and providers.

DR. STEINWACHS: Does that come through clearly?

DR. TANG: Maybe not.

DR. CARR: Could you just clarify? The meaningful-use recommendation is going
to be that EHR be populated with information from PHR?

DR. TANG: I don’t want to say that.


In public forums conducted by HIT policy committee, there has already been a
groundswell of desire for measuring the outcomes as it pertains to the patient.

PARTICIPANT: The patient-reported outcomes.

DR. TANG: The patient-reported outcomes. There is already an assumption that
there are other data sources than the, quote, EHR. So I just don’t want to
connect the dots and say that’s going to happen, because these are things that
are actively being discussed and actively being discussed in the context of
this meaningful-use program, which has its finite time line. So I am just
saying that’s where the puck is going already.

DR. CARR: To Bill’s point about if we don’t have this but we’re saying that
we need to make those connections where we can to get that data, that there is
a potential roadmap to get there.

Just one other point that Bill raised, and I had the same question. Is it
worth referencing what we’ve already begun to learn through HCAHPs, that that
was one step in saying how are we doing, what’s your experience of care? Is
there an answer? Is there any thought to referencing the work already done in
HCAHPs as a first step, the patient’s voice?

DR. MIDDLETON: We can reference it, but I am not sure it actually is all
that relevant. HCAHP information is not available to the treating physician in
the encounter. It means nothing to the treating physician.

DR. CARR: Oh, I see what you’re saying.

DR. MIDDLETON: What we would like to have is patient-reported outcome
measures actually in the record. The HCAHPs is all after the fact downstream.
This is part of the orientation I think we’re trying to flip.

DR. CARR: My only point being for the first time we said how are we doing,
and we learned about 50 percent.

Next is Larry.

DR. GREEN: I’ve been listening and thinking about the evolution of this
letter from the hearing to the draft to where it was to where it is. I have two
points I want to make.

One is I actually think the letter has arrived at a good point. I think the
points it makes are defensible, proper, relevant, and sufficiently radical, to
go back to that point. I believe we err if we underestimate the importance of
recasting our gaze toward quality measures that actually are meaningful to
people who dare become patients and get into the health care system. That is a
stunning recommendation, from my point of view, to say instead of trying to
develop quality measures that everybody says I can meet them at the 98th
or 99th percentile and get my bonus payment, to direct them
toward what people seek and need and want. Maybe I am just losing my energy
level or something, but that strikes me as being relatively radical and very
much worth the letter.

The second point I wanted to make is I remain satisfied with the letter. In
reviewing it before the meeting, I actually thought it came out at a pretty
good spot. I thought it was understandable. I thought it was quite faithful to
the hearing and what we heard, and I think it is reasonably well constructed. I
really would like to see it go forward.

DR. CARR: Leslie?

DR. FRANCIS: Part of why I was asking about new sources of data and how
radical this is, and your raising this point, I think there is a really
important privacy question that needs to be on the table with respect to data
that come directly from patients, rather than data that are recorded by a
provider about a patient.

I will use an analogy. I never get to know which student filled out course
evaluations, precisely because there is a concern that I might be vindictive in
my grading. Imagine how a patient might feel about the accessibility by a
provider if you’re locked into that provider, which of course some patients
are, to fill out honestly information about what the quality of the interaction
was with the patient, or potentially information about levels of compliance.

Once you start shifting the ground in some ways you were suggesting the
health IT policy committee might be, the questions about privacy and patient
honesty are huge. I am not saying how they should be dealt with, but I just
want them out there on the table, particularly to have the provider whose care
is in question see it.

I might love to have my provider see everything, but I might not. And it
might give me better care if my provider sees everything, but on the other
hand, it might not. If providers know that certain patients don’t like them,
that may not be good for the patients.

DR. TANG: Where is it that we say that the providers know?

DR. FRANCIS: Well, you didn’t, but that’s why I wanted to — you didn’t say
that they wouldn’t, and for patient-entered information and who sees the
patient-entered information, I just wanted the privacy question out on the

DR. MIDDLETON: I think clearly there are distinctions between satisfaction
or the personal interaction kinds of assessments, which might be more
appropriate for a hospital administrator, case manager, or not the provider
him- or herself, who are challenged to try to equalize this asymmetric
relationship in many ways. And yes, there are problems with being locked into
certain care providers or certain systems or what not, but I think in the end,
hopefully, we will get to the point where the feedback data is well taken.

Obviously, the clinical outcomes data, the patient-reported outcomes on how
many steps am I walking after my postop knee, that is incredibly important and
not threatening to the provider at all. They are extremely interested in that,
and that is what they want more of.

DR. CARR: We’ve heard from some people. I wonder if we might just go around
the room and get further thoughts about the letter, and then I think — do we
need to read the letter here? You’ve outlined what the concepts are.

DR. MIDDLETON: We weren’t planning to read the letter.

DR. CARR: No. All right. Mike Fitzmaurice, did you want to make any comments
about the letter?

DR. FITZMAURICE: No. I like the letter.

DR. CARR: Okay. Mark?

DR. HORNBROOK: One of the things that we’re trying to do in Kaiser
Permanente is establish evidence-based guidelines. So in oncology there are
over 420 treatment protocols that are programmed into the oncology management
module, medical management module, that have all gone through official review
for evidence standards, and there is a whole list of footnotes and things.

The most important thing is the fact that it is changing physician behavior.
The oncologists are working as a national team rather than local independent

So it raises the whole issue of whether we can use this letter and the
general structure of electronic medical records to raise the evidence standards
for practice and raise the ability to ask whether practices are being held to
evidence-based standards.

DR. CARR: So that’s a good thing, right? You are saying that by —

DR. FITZMAURICE: It is a good thing. It turns out the physicians are leery
of it, and many older physicians are saying that’s not what they signed up for.

DR. CARR: But you are saying getting a new feed of information is valuable
to expanding the perception?


DR. CARR: I understand.

DR. MIDDLETON: Mark, that is an interesting thought. Most guidelines, as you
know well, of course, say nothing about patient preferences. There is no
assessment of subjective patient preferences or whatever in the typical
guideline for almost anything. So in a way, this will augment perhaps the
evidence base in a subjective way beyond just the physical. To that point I
agree wholeheartedly.

DR. HORNBROOK: The next thing is not just documenting the evidence base for
what you can prescribe but then the evidence base for how you interact with
patients who have preferences over the different domains, which is, of course,
at a much higher level where we should be going.

DR. CARR: Bill, do you want to make an additional comment?


DR. CARR: Garland?

MR. LAND: I don’t have any comments. I don’t have any problem with the
letter per se. I have a lot of questions if this concept is doable. But the
concept of just doing research on it, I would support that.

DR. CARR: Sallie?

MS. MILAM: I like the letter.

DR. CARR: Larry? Don?

DR. STEINWACHS: I always support research funding on general principles.

DR. CARR: Marjorie?

MS. GREENBERG: I would just say that I’ve followed the process. I wasn’t
able to be at the hearing, so I am not as immediately informed by that. But I
think the process has been due process. There was a hearing. We’ve had very
knowledgeable consultants involved, went through a process of discussion last
meeting, and I think you took on board a lot of that.

I particularly like recommendation one, and I think just having that coming
from the National Committee has value. I am fine with the others as well. I
think the time has come for this letter, yes. I thank you for the work you’ve
done it and the others who have also worked on it, Matt and our contractors, et

DR. CARR: Leslie?

DR. FRANCIS: It’s the phrase at the bottom of the paragraph following
recommendation one. “Issue preference-sensitive measures,” which are
different from measures of patient preferences, and “measures
incorporating patient-generated data.” If you could drop a footnote there
to the effect that part of what this ought to involve is some consideration of
whether different privacy issues are raised by new forms of measures as part of
what is on the table, then I would be delighted with the letter.

DR. MIDDLETON: Would you care to draft a sentence or two and send it?

DR. FRANCIS: Yes, sure.

DR. CARR: Marc?

DR. OVERHAGE: Nothing to add.

DR. CHANDERRAJ: I am quite a newbie to this, but the only thing I would
comment on is the subjective interpretation of the patient satisfaction data.
We are trying to quantify everything to the informatics, and I don’t know how
we can quantify patients’ subjective feelings of benefit from visiting a

Philosophically, I feel a patient’s symptom to his illness is only 25
percent of his illness. Seventy-five percent of the symptom is a manifestation
of the emotional reaction to his illness. I don’t know how we can address that
in trying to quantify that.

DR. CARR: So hence the research, I think.


DR. WARREN: I think it’s a great letter. Kudos.

DR. CARR: Walter?

DR. SUAREZ: I am for the letter. The only comment I would make is in
observation number one. Two points. The first one is relative to the title,
“Focus on consumer’s perspective.” My sense is that we are really
talking is a focus on the consumer’s need, right? Because consumer’s
perspective gives the impression that we’re going to be looking at measures
that include the consumer perspective of health care quality and self-surveys
and that kind of thing. So maybe the wording might be better to say something
like “consumer’s needs.”

The second one is something about the fact that somewhat, it gives me a
little bit of an impression that we are not necessarily acknowledging all the
work that has been done in this field. In many respects it is a lot of work
that has been done, but it has not been yet very successful because, clearly,
we haven’t fulfilled the needs of consumers.

So my suggestion was, in the actual recommendation, to prioritize creation
and funding for advancing the development of new measures, sort of more into
the advancing the progress that had been done rather than giving the impression
that we need to invest for the first time in this.

Those are the two comments.

DR. CARR: Any other comments, suggestions? Yes?

DR. EDWARDS: I usually don’t say very much, and I’m a little bit out of my
field by coming, and I don’t speak for NIH, but clearly this whole domain is
one we in the cancer field have brought into our population data systems in
cancer surveillance, and we routinely try to incorporate these measures on
outcomes. Also, I know there is a fair amount of interest in the patient and
certainly survivorship.

So, in general, it seems to me this pulls together a lot of things that are,
I think, pretty standard and the sorts of objectives with which I have been
involved in that connection between surveillance at the population level and
the clinical care arena.

DR. CARR: Great. Thank you.

With that, we have comments and this will come forward tomorrow.

Well, look at that. We’re ahead. Now on to —

DR. MIDDLETON: Thanks for everybody’s input.

DR. TANG: And is there an action on that?

DR. MIDDLETON: The action is tomorrow.

DR. CARR: The action is tomorrow, right?

MS. GREENBERG: Yes. I think there are just a few things you said you were
going to modify or add, like that sentence and a few other things.

DR. CARR: Yes. We have a couple of modifications this afternoon, and then we
will get the final copy in the morning and have the vote tomorrow.

MS. GREENBERG: I would expect it to be quite quick tomorrow. Are you both
here tomorrow?

DR. CARR: And thank you again for all the work, because you really have been
very responsive to the input.

Agenda Item: Community Health Data Initiative

DR. CARR: Larry, Sallie, Marc, and Leslie. Who is going to speak? Sallie.

MS. MILAM: On behalf of Larry and myself, we felt the workshop yesterday was
just incredible, and I think probably everybody else did as well who attended.

For those of you who were not there, I will just draw your attention to the
agenda. It is the last item in tab 1. You can see just at the highest level
that we had three panels. We had a public health panel, we had a community
health panel, and a health information exchange panel.

We heard about how each of these different organizations are using data to
inform their community, how they’ve been developing indicators. We heard some
common themes around needs for standardization, needs for infrastructure. At
the end of the meeting, with folks from all of the panels, including membership
from the committee and staff, we went around the room and identified common
themes, emerging themes, and areas for opportunity. We had a lot of

Susan Kanaan took notes for us on those themes, and I think we will be
getting into those themes in some depth in our subcommittee meetings after
this. But I asked Susan if she could just touch on some of the highlights,
because I thought that they did a pretty good job of condensing some of the
important points from the day.


MS. KANAAN: Somebody made the point yesterday when we were going around the
room to mention the themes we heard that the tendency is to hear the themes
that you sort of came in with, the interest that you already had. So I cheated
a little bit, because I have 25 pages of notes.

I just went through them very quickly. I have been doing that while
listening to you all. Some of these themes are things that I identified from
the background conversations that I had with everybody. If you have any time to
take a look at the background write-ups, they really are quite fascinating, I
think, and worth spending a little bit of time with just to get a flavor of
these programs, these wonderful communities.

I will just give you a few of the highlights that I have from my notes. As I
say, some of these come from the background conversations and some from
yesterday’s meeting.

I was struck by the fact that, really, we need to start thinking of the
community as a data user. When we talk in this environment and others about
data users, the community is a data user. It is a very purpose-based and
solution-oriented user. We saw lots of different kinds of evidence of that

I would say the workshop had very much an assets focus. We certainly talked
and identified a lot of needs, a lot of gaps, but both the tremendous energy in
the room and just what people are doing, they are very focused on their assets
as communities and what they can do. So, really, we did identify a lot of

Some of the specific themes. Certainly it will not surprise you to know that
there was a great deal of attention and a lot of programs and policy work
around social determinants of health, and in particular the environment, so
really kind of joining personal behavior, health, and environmental factors. It
is not theoretical at the community level, and it is very easy, I think, for
communities, once they have that perspective, once they have that insight, to
make that real and to go out and find those factors and to try to figure out
how to change them.

In that context, certainly health disparities is a very common focus and
concern. The disparities vary from community to community, but they are all

There are extraordinary coalitions in these communities, and there are many,
many types of coalitions. I think there is a lot to be learned from the work on
the ground in building coalitions. Again, that is an embodiment of this very
broad approach to health and the determinants of health. You have health
agencies working with education and transportation and housing agencies. You
have community-based organizations from these different sectors, et cetera, et
cetera. I could go on.

They really affirmed over and over again the importance of data in building
coalitions, influencing their local politicians and decision makers, building
credibility. So they want data, they need data, they collect it from many
different sources, including things that they design themselves, often in
collaboration with their local academics and people who know how to do that
right. But they see it as an important source of credibility and of local

Some of their fact finding and research is community based, it is
participatory research. We heard some fascinating stories of community-based
participatory research. But again, in many cases, especially Denver, it was
really kind of the leading example of rigorous community-based research, very
exciting models.

Community-based research is really a bridge to action. It engages the
community right from the point of identifying what the issues are, gathering
the information, et cetera. So that was a very interesting theme as we went

Certainly the importance of trust was a theme. Interestingly, some people
made the point that involving people in the beginning in data collection helps
to build trust among the people who are most suspicious about government use of
data, et cetera. So there are confidentiality and privacy issues, but there are
also some strategies that were demonstrated that really show how to build

Some of the issues that were identified, the most common theme we heard
probably, or one of them, was the challenges of the limits of small-area data
and also data on small populations, racial and ethnic populations, and repeated
cries and appeals for better small-area data and better strategies for getting
the data.

We saw some remarkable tools, especially in Sonoma County. I think that’s
the star of data presentation to stakeholders. That includes many different
sources, very many audiences for data, and that was something that a number of
them stressed. But some of the communities have really developed some
remarkable tools for presenting their data in ways that are very useful to the

Walter verbalized for us the issue of the digital divide — sorry, I am just
reading this list here, so it’s not organized in the best possible way,
probably — concerns about a digital divide between the clinical information
world and the public health information world. There was, I think, common
agreement among the panelists that that is indeed a concern and a lot of
questions about what to do about that digital divide.

There was talk, especially toward the end of the day, about the potential
economies of scale in helping local health departments, because there is a lot
of variation in the levels of sophistication of staff members and a need for
better analytics. That was another recurring theme. They need help with data
analysis, both their own data and whatever data they can get their hands on.
This is certainly one of several opportunities for NCVHS to provide advice. I
am not ready to give you the list of requests or opportunities for NCVHS, but
there certainly were a number of them.

So needs for training and technical assistance and ways to do that with
economies of scale. You cannot do it for all of the, what was it, 3,000 local
health departments in the country, I think they said? Maybe it’s more than

Finally, a great deal of excitement actually. Todd Park talked about the
Community Health Data Initiative. People were really excited — a woman who is
a community organizer in South Los Angeles. Even though the data initiative
cannot yet probably provide the kind of small-area data that people want, they
could see the potential for this, both for training, for networking, for having
everything in one place, and as Leslie mentioned earlier, they would like to
have alerts for what is the newest thing, because just getting the information
and staying on top of things is really a challenge.

But it was nice to see that connection, because one of the things that
struck me in my interviews was how few people seemed to even know about the
Community Health Data Initiative. So it was an opportunity for some learning,
both from them and to pass on some information to them about new resources.

MS. MILAM: Thank you, Susan. That was terrific.

It was truly incredible to hear from the different communities about how
they used data, how they worked together, and then how they were able to
effectually change within their own community.

Larry, do you want to add anything?

DR. GREEN: I would like to hear from Marc and Leslie.

DR. FRANCIS: Privacy was a little bit along for the ride in the first one,
in the sense that we were partners in planning, but this first one was a lot
about what are the ways that communities are getting, using, becoming involved
in, and generating change through data, with an eye to looking at how can that
be enabled through the kinds of privacy protections that promote trust. We were
not focusing on the privacy side.

So what I am going to do is just give you three themes that I picked up as
ones that I think will be privacy agendas over the next little while.

The first is the general one of how do we think about what are the best
practices for protecting privacy in some of the kinds of community uses of
data, both data involving clinical information but also data involving
non-clinical information and new forms of information. The role for NCVHS there
would be best practices.

The second theme in question is, many communities want very directly local
small-area information, qualitative studies, the ability to tell a story that a
qualitative study enables, and are there different kinds of privacy issues that
emerge when we’re using information like that?

One of the examples was publishing the names of landlords where children
have been diagnosed with high lead levels in their buildings. They solved the
patient privacy problem by publishing the landlords’ names. Well, maybe, I
found myself thinking. Those are fascinating and serious, tremendously
information, but how do we think about privacy and confidentiality there?

The third one — maybe this is just reflecting my lawyer wonk — but some of
the kinds of information that matter come from non-clinical records, and
schools are a big source. One of the groups has begun to pilot a way to deal
with the HIPAA/FERPA divide problem and considering whether — I will
generalize this — considering whether a sectoral approach to privacy of the
kind we have in the U.S. today with one law about school records and another
law about clinical records, just to give you one example, whether there are
some ways to try to get beyond that.

PARTICIPANT: We wrote a letter about that, right, already?

DR. FRANCIS: We did, but the whole point is there may be new stuff out there
to work on it.

MS. GREENBERG(?): Yes, we have written a letter on it. But we haven’t solved

DR. OVERHAGE: This didn’t come up in the testimony so much as in thinking
about it later. I was struck by the — and this is like so many of the things
we deal with — the inherent tension between — you heard some comments here
about, and some of themes that were summarized, about wanting smaller, more
localized data. We saw some examples presented yesterday down to the census
block level. Your comment about the landlord is another example, I think, of
this. We’ve got this ongoing tension of wanting to be able to do things at an
actionable scale, but when you do that, you start to bump into identifiability
very rapidly because of the small numbers. Even if you just say there is one
person with this diagnosis in the census block, and it’s a male between 40 and
60, we know who it is. That tension, I think, in being able to create
actionable information, whether it’s tying it to the patient, to the geography,
or whatever, and still manage through the privacy issues I don’t think came up
in the testimony so much as I was thinking later about how do you reconcile

It reminded me a little bit about Brad Maelin’s(?) more recent work looking
at identifiability thresholds and metrics that you start to apply and say,
okay, here’s a level that’s —

DR. CARR: Could I ask, what did they say about, in the Bronx REO, about the
information that they send to DPH? We heard different perspectives on how much
or how little information they send.

DR. OVERHAGE: They said everything was available to the public health, they
just didn’t use it much.

DR. FRANCIS: Yes, and then — that was just the starter on the privacy

One of the possible ways to think about the kind of tension that Marc was
just underlining is if you have the community involved from the beginning in
the design of the questions and the thinking about what you’re going to do with
the material, you may get very different answers to what it’s okay — you may.
It’s not to say that you would, but it’s a different — the issue is going to
be to try to think about what the various appropriate models are in that

DR. CARR: Marjorie, and then Matt had something he wanted to share as well.
Go ahead.

MS. GREENBERG: A lot has been said, and it was really an excellent day, and
I thought it was excellent that the committee really have the community voices
as part of our agenda, because we hadn’t really had anything quite like it

I think Garland asked a question about types of data that were most useful,
or what do you find most use for, or what data are you actually able to use for
action, et cetera? You could repeat it better than I can here paraphrasing it.
But I think that that is an area that needs more — and they answered, and they
sort of said all of the above, which was the national data, whatever, more like
the survey data, the DRFSS, et cetera, and then actually locally created data.
They didn’t say they just wanted local data. They clearly didn’t feel they
could just use national data. They really found uses and value to all of them,
and then they added the qualitative data, as Leslie mentioned.

But I think what needs more investigation is understanding the extent to
which — where local data really are needed. There was a lot of talk, as you
heard, about environmental assessments. Clearly, that has got to be done at the
local level. You’ve got national data or international data about the negative
effects of lead in lead poisoning, whatever. But as to whether there is lead in
buildings, you need to do an environmental assessment locally, not in some
other community.

Because we, particularly in this environment — well, in any environment,
frankly, even when we’re in less of a deficit-ridden environment — there is
limited money for doing local or even state-level data. It is certainly a
problem in my agency. The National Center for Health Statistics would like to
have more at least state-level data. So we need to understand better just where
having data about a community specifically is going to add that value. I think
we have a basis for looking at that more. We covered a lot of things yesterday,
and I think the challenge will be to see where do we want to dig down.

I was thinking last night — we were all thinking about this last night, I
guess — but whether we might be leaning towards some type of primer like the
primer we did on stewardship, of course involving these communities and others,
because I think my main concern was that not everybody be reinventing the
wheel. There are a lot of good models out there. So I think there is a lot to
harvest here.

DR. CARR: Matt?

MR. QUINN: I was going to say, exactly in that vein of not reinventing the
wheel, I just wanted to make sure that one of the projects that I was working
on at AHRQ and the final report for it is actually, once I finish editing it,
it will be ready. But it’s called “Community Collaboration: Lessons
Learned for Health Information Exchange.”

The point of this project — and I wish I could have been here yesterday; I
just wasn’t able to make it — was that community collaborations occur every
day in many different domains, whether they be community planning, whether they
be education or land use or transportation issues — and there is rich
literature around both, what has been successful and what hasn’t been
successful, as well as different models. And so for this project we did that
literature review, then we brought in folks from successful and
less-than-successful health information exchange efforts, as well as folks from
different domains of community collaboration and some of the people, the
academics in those areas.

What we did was we looked at some of the success factors for health
information exchange and said, What can we learn from these others, in both the
planning, formation, and sustainability of these? It’s a little bit different
here, but there are some really concrete things. It also speaks to the roles of
different levels of government in this. What we found was that there is a real
paucity of involvement at the mayoral kind of level or the county level on
this, and there is a real opportunity.

We asked Cory Booker, who is the mayor of Newark, to come, but he didn’t
make it.

PARTICIPANT: He was busy.

MR. QUINN: He was busy with the new $100 million.

I think it’s a report that would provide some additional context on this,
and I am more than happy to make it available in its present form for this. I
really wish I could have made it yesterday.

MS. GREENBERG: That was actually one of the questions I asked on this whole
area of collaboration which was so critical: Are there templates or are there
best practices, or is everyone just kind of — because even though each
community had its own unique characteristics, there was so much commonality
across them.

MR. QUINN: There is so much to learn from other domains of this. One of the
things that we really struggled with in this report is that health information
exchange, both as a noun and as a verb, can mean very many different things to
many people.

In one way it is sort of an infrastructure to serve the whole community. In
another essence, it is for specific purchasers and customers that are somewhat
of a subset of that broad set. There was a tension around that in terms of what
the goals — and this was specifically in the context of the money that ONC has
set forth for this.

So I am more than happy to make it available and I will send it.

DR. STEINWACHS: It was striking to me, because at the Population
Subcommittee we still frequently talk about diseases and disorders instead of
health and the population. But these were really health oriented, so it made
you really feel good at the community level. It wasn’t about disease by disease
unless that was a dominant issue. It was about health.

The second thing that came through — they are in a declining resource
environment, as the states are — and Todd Parks, as he talked about what HHS
is doing government-wide, it made you really think that the federal government
could play a huge role in making data available that could be used by these
communities. There is a slimmed-down Medicare record that Jim Scanlon was
talking about that has become available. They have Medicaid data. They could
get that down. Things like food stamps and other things could be collected by
the federal government from the states and then made available again, because
otherwise, if 3,003 counties have to redevelop all of the basic infrastructure,
recognizing they still want to do their own service, they still need to do
community organizing, I think we get a long ways, and I would think the states
would find it a relief not to feel that they’re being burdened each
individually trying to get data to each area for some of these things that are
really national resources.

DR. CARR: Larry?

DR. GREEN: This is a great summary from my perspective. There are two things
I want to cull out at this point, having listened to those and also earlier
discussions today and having had a chance to sleep a bit after the workshop.

One of them is, it appears to me that someone forgot to send a memo to
America’s communities that we are in a resource-constrained freeze. There is a
ton of stuff going on at the community level that is desperate to improve the
health of their communities. Communities everywhere see health as a fundamental
capacity. You heard it again yesterday. It’s the foundation for achievement.

The American people and the towns they live in really care about health. We
had exemplars, heard scouting reports from Washington State to — well, all
across the country, the Bronx to South Carolina, to Los Angeles, to Minnesota,
Missouri, and Colorado. I mean it was a very nice dispersion of size, range,
red and blue, the whole thing. It was very nicely done.

We should relieve ourselves and disabuse ourselves of the notion that at the
community level people just don’t know what to do, or they don’t know how, or
they don’t care.

My abiding take-home bottom line for that workshop is that it exposed the
missing translational infrastructure necessary to connect communities and
knowledge that they need in a way that is usable for them. The services needed
from that infrastructure were announced in capital letters throughout the
workshop. Several people said analytics, analytics, analytics — knowing what
is in the national centers’ national data sets and the items that are there and
the ones can be used so effectively at a local level, how to do a qualitative
analysis properly, to do a mixed-methods thing to get a valid and useful
result; the education of the public about the uses of their health information
and how it can benefit their whole community if they share it, as opposed to if
they don’t share it. So there is just a long list of those things that came

But a unifying idea that I want to just stake out some territory on here is
the nation needs a different type of data-use infrastructure than the one we’ve
got. Just like we doctors need to get over the way we used to practice medicine
that doesn’t work very well and replace it with another one, I think health
statistics needs to recognize that there is a new world coming. It was just
trying to burst out in this room yesterday to heal that schism between public
health and personal health systems, social determinants of health and other
determinants of health. It was so clear that that is the wrong dichotomy, those
are the wrong ways to think about it. It is the integration of that and pulling
it together.

The more I thought about it — it sounds like Marjorie and I were both
thinking last night about this again — that may be territory for us to focus
on and walk into and to see if we can begin to sort out the nature of the sort
of infrastructure that would take advantage of what we already have.

Almost all of them left data on the table. Many of them did not know that
they had left data on the table, and if they were only helped a little bit,
they might not have, and we might get value for the investments we make in

As the morning went along, and I listened to Jim Scanlon’s report and
everything, I wish to express opposition to the notion that this committee
should hesitate in any way to not (sic) continue to work the territory that we
are assigned to work to figure out what we need to do to have a proper data
structure and information system in the country to improve health and health
care. Even if we are in a 3- or 4-year period of uncertain budgets and flat
budgets and everything, I am just going to keep saying, Well, the problem is
the people in Missouri are still making progress; the people in Minnesota are
still under way. South Los Angeles is making a difference. Sonoma County, look
what they’re doing.

PARTICIPANT: And South Carolina.

DR. GREEN: That still remains one of my favorite quotes: “South
Carolina has concerns about government intrusion.”

DR. CARR: I was also thinking, but I was rereading this 60th
anniversary, and the closing comments here are the recommendations from former
chairs as to “…set a number of challenges before NCVHS that it is
sure to keep in mind as it plans future work.” So here they are:

• Think big;

• Think ahead;

• Set your sights 3 to 5 years out;

• Add research, education, and communication to the NHII vision and
work on a research agenda;

• Create communication standards to complement information standards to
greatly improve impact;

• Help establish accountability for health outcomes;

• Make the vision understandable to those working in the trenches;

• Take full advantage of the 21st century tools and

It sounds a lot like what we’ve just been talking about, I think on target.

I want to just get very concrete as is my penchant for a few minutes now
about what we do for the rest of today and tomorrow. One thing is we have a
plan to get together with Todd Park on what we’ve learned from yesterday’s
hearing and to participate in the June 9 event at the IOM.

Every time I hear it, I am excited about it, but I cannot always remember
what it is that we’re doing. But I am hoping that one of you took more detailed
notes. I think when he first spoke you were talking about how these data are
coming together and juxtaposing them and learning things, and I think we saw
great examples of that yesterday again, going back to Sonoma County. But we did
talk about what are the kinds of privacy things that we should think about, and
as Leslie said, we didn’t get very deep on that.

So I think one of the things we need to do when you’re meeting this
afternoon is to think about how are we going to participate in that, and are we
going to have a work product out of yesterday’s hearing that will transmit to
that group to enhance? But I think we are going to need a little dialogue with
them to make sure we are doing what they want.

PARTICIPANT: Can you just describe the June 9 meeting?

DR. CARR: Last year, remember, our last year’s homework was to watch the
video. So that event, which was showing the liberating of government data and
the partnership with Google and all the mashups, they’re going to come back
again this year in June and do an update of what they’ve learned, and so on.
The committee I think is invited to participate.

He was very enthusiastic about the value we could add, but I just want to
make sure that we are clear on what the expectation is and that we are aligned
with what the expectations are. So that is one thing.

The second thing is we’ve talked about — I think it goes back to, and I am
reading our minutes from the last time, that we do want to be thinking 18
months to 3 years out anyway about what the work ahead is, the direction that
we’re going to go in, and we said that we would do that, and I think that we
need to go back and do that.

We also talked at the last meeting — Chuck Friedman was enthusiastic about
our interface with the learning health system, the IOM report. Again, it is
something that we felt enthusiastic about, but as I try to do the crosswalk, I
think I am not exactly sure of what specifically coming out of that report
becomes our charge. We talked somewhat about it. So if you could just read over
that summary again tonight and let’s think tomorrow about how does that
integrate and is there a next step there.

Just a couple of other things. We have letters, so a couple of edits on the
quality letter, a couple of headings on the standards letter, and we will vote
on those tomorrow. And PCAST, if you could have the time today or tonight to
put a couple of thoughts down so Matt can take a first pass at that.

The only other thing, we had some good discussion, and sometimes I worry
that we lose the thread, but Blackford has said, at the last meeting, how do we
assess how we’re doing in our eyes but in the outside world? I still think that
is an important question. We are not going to answer it right now but it’s
something to think about: Are we adding value? Are we participating in a space
that is not redundant and that seems to add some value going forward?

MS. GREENBERG: Could I just — two quick things. One is related to what you
were just saying. We’ve streamlined the work plan for the committee and also
incorporated into it information we’ve gotten from the Standards Subcommittee,
which has a more detailed work plan at this point because they’ve got all these
mandated requirements. So that is in tab 8.

We have always carried a lot of historical stuff in it, which is helpful to
us for certain reasons, but we didn’t feel we needed that in the version that
you all use. So it would be helpful to us if each of the subcommittees, when
you meet, just look and see, A, whether this is capturing the main projects
that you’re working on and planning to work on, building towards this roadmap
that you’re talking about. Then if there are particular columns or information
you think we should be capturing which maybe relate somewhat to Blackford’s
issue about how are we tracking how we’re doing or what we’re doing — do you
want to say anything more about that, Debbie?

MS. JACKSON: That’s the main thing.

MS. GREENBERG: Okay, we would appreciate it so that we can work with you on

The other thing, and it relates to what we were talking about with the
Community Health Data Initiative and Larry suggesting that maybe we need a
21st century vision for health statistics — I think we have that —
but anyway, I believe that the Board of Scientific Counselors, the National
Center’s Board of Scientific Counselors, has been reconstituted. A number of
members went off and they’ve now got new members named, and they did have a
one-day meeting the end of last month. I believe we need a new liaison to that
board. Certainly as we work in this area of health statistics, along with
everything else, I think having a liaison and then having them have a liaison
to us — Mike O’Grady, who is — well, Jim Lukowsky(?) or whatever, he has gone
off the committee. He was the principal liaison from the BSC to this group.
Then Mike O’Grady, who was local and so participated and was the alternate, I
believe his term is also ending. So that is just something — I guess, I think,
would you delegate that to the Populations Subcommittee to make a
recommendation? The person wouldn’t have to be from Populations, but that is
where the most overlap is.

Anyway, I don’t want us to let that drop, because I think Bill was the
liaison, and he has ended that term.

DR. CARR: Yes, because that went with Populations.

MS. GREENBERG: It went with Populations, and he is local, so it made it a
little bit easier for him, and we want to thank you and appreciate your
contribution there. Also, he worked with them on, I think it was an actual
long-term care project in another capacity. So it was an appropriate
assignment, but he has discharged it, and so now we do need a new liaison, and
they will have to deal with giving us a liaison, but it works both ways where
we’re going to have that transition.

DR. CARR: Anything else? Okay, we will adjourn this session, and now let the
subcommittees begin.

(Whereupon, at 2:30 p.m., the full committee adjourned, to reconvene in
subcommittees following a brief recess.)