[This Transcript is Unedited]

Department of Health and Human Services

National Committee on Vital and Health Statistics

Full Committee Meeting

November 16, 2011

Holiday Inn Rosslyn at Key Bridge
1900 N. Fort Meyer Dr.
Arlington, VA 22209

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



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

DR. CARR: I would like to call order the meeting of the National Committee
on Vital Health and Statistics. Welcome everyone. We will start by going around
the room to identify ourselves. I am Justine Carr, chair of the committee,
Steward Health Care, no conflicts.

MR. SCANLON: Good morning. I am Jim Scanlon, Deputy Assistant Secretary for
Planning and Evaluation at HHS and executive staff director for the full

DR. FRANCIS: I am Leslie Francis. I am professor of law and philosophy at
the University of Utah and I co-chair the Privacy, Confidentiality and Security
Subcommittee. I am a member of the full committee and I have no conflicts.

DR. KLOSS: I am Linda Kloss, health care information management professional
in private consulting practice. I co-chair the Privacy Subcommittee and am a
member of the Quality Subcommittee and have no conflicts.

DR. MAYS: Vickie Mays, University of California Los Angeles, professor of
psychology and health services. I am a member of the full committee, a member
of the Populations Subcommittee, and a member of the Privacy Subcommittee and I
have no conflicts.

DR. MIDDLETON: Good morning. Blackford Middleton, Partners Healthcare
system, Brigham and Women’s Hospital, Harvard Medical School, and member of the
full committee and co-chair of the Quality Subcommittee and member of the
Populations Subcommittee, no conflicts.

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

DR. BURKE: Jack Burke, Harvard Pilgrim Health Care in Boston, member of the
full committee, member of the Privacy, Confidentiality and Population
Subcommittee, no conflicts.

DR. SCANLON: Bill Scanlon, National Health Policy Forum, member of the
committee, member of the Standards Subcommittee, no conflicts.

DR. COHEN: Bruce Cohen, Massachusetts Department of Public Health, member of
the Population Subcommittee and the Quality Subcommittee, no conflicts.

DR. GREEN: Larry Green, University of Colorado, member of the full
committee, co-chair of the Population Subcommittee, no conflicts.

DR. MILAM: Sallie Milam with the West Virginia Health Care Authority,
co-chair of Populations, member of Privacy and member of the full committee, no

DR. WARREN: Judy Warren, University of Kansas School of Nursing, member of
the full committee, co-chair of the Standards Committee and a member of the
Quality Subcommittee, no conflicts.

MS. JACKSON: Debbie Jackson, National Center for Health Statistics,
committee staff, sitting in for Marjorie Greenberg who will be here
momentarily. She is the Executive Secretary.

DR. CARR: Who is on the phone please?

MS. DOO: Lorraine Doo with OESS at the Centers for Medicare and Medicaid
Services, lead staff to the Standards Subcommittee and no conflicts.

DR. CARR: Raj, do you want to introduce yourself?

DR. CHANDERRAJ: Nevada Heart & Vascular Center, practicing cardiologist,
no conflicts.

DR. CARR: Thank you.

MS. KANAAN: Susan Kanaan, writer for the committee.

(Introductions around the room)

DR. CARR: Thank you everyone. Jim, give us an update from the department.

Agenda Item: Updates from the Department

MR. SCANLON: Thank you. Good morning to everyone. Let me give you an update
on some of the data policy activities underway at HHS. I think last meeting we
talked a bit about our HHS strategic plan. We are in the process of making some
small revisions in the plan and then we will be finalizing. That will be the
plan for the next 3 or 4 years. As soon as we do that, it is probably a week or
so away, I will share that with the full committee again. Very slight revisions
just updating for the strategic plan.

But in addition we are continuing on a number of initiatives that each one
of which has an action plan or a strategic plan and each one of which we try to
establish some sort of evaluation or data or dashboard type of capacity. And
they include tobacco control, HIV, hospital acquired infections, reducing
disparities, health care disparities, the National Quality Strategy, National
Prevention Strategy and a couple of others, global health issues and early
childhood health and development. This is more on the human services side of
HHS. In each one of those we try to assure that there is some data focus and
some dashboard to look at. Are things getting better or are things getting

I did want to report back that the secretary did indeed adopt the Affordable
Care Act data collection standards that were required by the statutes on
October 24. She adopted and promulgated data collection standards for sex,
race/ethnicity, language, and disability for basically it will be all over
HHS-sponsored or conductive surveys. Again, the focus here is self-identified
reporting. They are now on Data Council’s website and if you would like, we can
give a full presentation on what they are. I think we briefed you on these
previously, but at any rate all of the HHS agencies are not required to
implement these standards, again, in connection with their normal planning
cycles. For any new survey the survey would have to include these items as they
are for any revisions to one of our current surveys, the health interview
survey or the NHANES, the Medicare Current Beneficiary Survey. They would have
to include the standards at the next update or revision which normally is
within the year.

Again, the standards are minimum data standards so that these are the data
items you have to include. You can collect as much additional information as
desired as long as you include the standard. Or in the case of race ethnicity
the additional granularity can be folded back to the OMB standard and so on. At
any rate these were subject to public comment, fair amount of looking at what
others had used and recommended. We looked at what the Census was collecting
and what our major surveys were collecting. This was the result. Again, the
focus now will be on implementation. We will probably have our Data Council
identify all the major surveys to which this would apply and we will look at
where they are now and then what their plan is to include these.

As we said, the next stage the secretary has the authority to adopt
additional standards. We were asked to look next at social economic status
measures and the potential for standardization. And I think we have asked the
committee to help us with this, Populations particularly, to help look at the
state of the art here, what people currently are using, strengths and
weaknesses and then if there are — it may be that there are no standards that
we should adopt and that is perfectly fine. We certainly made that conclusion
previously where really there wasn’t enough to standardize and look at best
practices. But to the extent that there are standards that could be recommended
we would like the committee to give us their thoughts there. Where we go after
that we are still looking. We want to get some experience with the initial set
of standards to begin with.

Associated with that we are looking at data at vulnerable populations more
generally. These are not standards. I don’t think the data has risen to the
point of actual standards yet, but we are focusing on, for example, the LGBT
population and NCHS has developed a plan to test some questions on basically
sexual orientation in the Health Interview Survey. On the transgender health
issues, HHS has had one listening session to look at what the data needs are
and what are the priorities and so on. We will be having another listening
session where we will bring in folks from the outside in the weeks ahead. There
will be one more. Then we can proceed from there.

And then among the other vulnerable populations are disabled population and
the rural population which we will try to look at again.

As I said previously, everyone is interested in the ability to monitor the
implementation and the impact of Affordable Care Act and other health systems
change. One way we have done this is to set up what we are calling a dashboard.
Let me spend a couple of minutes if I can on that because I think the committee
would be interested in hearing this concept generally.

Here we are looking at 10 domains that it is reasonably expected that the
Affordable Care Act implementation would have some impact on it. The indicator
might change one way or the other preferably for the positive side. And the 10
domains are access to care, cost and affordability, insurance coverage
obviously, quality of care, impact on vulnerable populations, impact on
workforce issues, innovation. Are there forces in health systems change that
will hinder or promote innovation? Question there. Population health which are
the classic public health issues, prevention including preventative services,
and then health information technology generally.

The focus here is within these 10 domains. We have selected after a long
process where a number of indicators were proposed. We boiled it down to five
indicators in each of these domains. We set up an internal dashboard. We will
be turning that into a public facing dashboard as well. We have awarded a
contract. Within 2 months we ought to have that public facing dashboard where
you will see indicators and be able to track indicators in all of these areas.
We will look at where we want to treat things. We are relying on our surveys,
our data systems, our administrative data, and so on to populate the
indicators, everything from health insurance coverage to enrollment in Medicaid
and so on. We can brief the committee and we are fully on that. We will
probably have it available publicly for the next meeting.

And then finally if I have the time — I can actually expand. Within HHS
under the offices of the Data Council our leadership asked us to begin looking
at our whole portfolio of surveys and other data systems including
administrative data systems and including the types of data that the Affordable
Care Act might bring, mostly administrative data. In essence, what will the
exchanges bring? What is the federal data pub? How will it work? Various pieces
of health reform. Medicaid expansion. Again, there has to be systems to support
all of those. And many of them will be transactional systems.

But we are looking at to what extent there are actually data and standards
and that could be used for policy research, monitoring and evaluation purposes.
And, again, you will remember that in the beginning with claims data and
enrollment data it took a long time to get claims data to the point where you
could actually use it for research and statistics. And now I think everyone
realizes it is probably one of our major data resources in the country and
certainly for federal programs. The thinking here was that we could with a
little bit of planning ahead and with attention to some standardization and
principles of design, we could actually try to assure that some of the new
administrative data systems that would be developed in connection with health
reform will in fact cut some of that time off and perhaps have availability of
enrollment data, eligibility data, characteristics of health insurance plans,
quality of health insurance, utilization of health expenditures and so on. We
could actually begin thinking about that more generally.

The department, the leadership asked the Data Council to form a working
group and we have been working — we tried to do this in 90 days, but it took a
little longer. But the fruits of the effort are now coming forward in terms of
recommendations. And, again, I would like maybe brief the committee on the full
array of initiatives and ideas that have come about.

But one of the things that we did within the workgroup is we divided up into
— number one, what is the content that we would like to have. And, again, as I
said, health systems change occurs every year anyway in health. It is ACA but
it is broader than that. It is what are the things you would want to know
almost regardless of the particulars.

Number two, we had a workgroup to look at. Are there research, technology
and development concepts, tools, and practices that we could apply to our own
federal surveys and administrative data collection systems in essence to speed
up the data to make the data more widely available and so on? And we had a
number of very nice recommendations there relating to potential for web
surveys, for quick response surveys, for a number of other things which I will

A third workgroup was asked to look at what we have referred here in the
committee and other places as the learning health system. And it is broader
than that. It is not just the health care system. But in essence is there a way
to bring together the fruits of electronic health record capabilities,
administrative data systems, and surveys and research and surveillance. Is
there a way to put together a framework whereby as all of these move forward
they are not simply developing separate arms, but they are actually aligning
and supporting each other, which requires as you know a certain amount of
standardization, comparability? Without really planning for the kind of data
you need from any of those sources. You are really left later with trying to
basically a rescue operation. Again, in those three areas. And that is an area
I know the committee has talked about as well.

And here we are looking at very specific projects, not just philosophy and
not just potential capabilities, but very specific projects that could
demonstrate a proof of concept. For example, the public health area could
benefit in meaningful and practical ways from EHRs. And it is more than a
concept. Again, we have to find projects in a research agenda that would
actually try this out and move us forward.

The same thing in the surveys and research area. We are actually going to be
testing the ability of electronic health records where they exist to provide
data for some of our major health care surveys. And research will probably be a
later stage.

We started a few projects dealing with the ability to participate in
national health care surveys through EHR automation. We are looking at — you
will hear later from Seth Foldy, but we are actually undertaking a couple of
projects that will try to actual demonstrating or testing moving data from EHRs
to public health systems as well. And, again, these rely on, as you know,
standards. They rely on comparability. They rely on relationships. It is more
than meaningful use. Meaningful use gives the concept, but you actually have to
make this work and I think you know better than I. Electronic health records
without some structure content and reporting capability are almost like paper
records for the purposes of reporting. You have to decide what it is you want
reported out besides whatever is used internally.

We have a number of projects. I think the Population Subcommittee would be
interested. I think Standards and Privacy would be interested as well. All this
has to take place obviously in a framework that protects confidentiality of
individual records. At every step along the way we have to balance. How can
this be done while still protecting privacy?

We would like to brief the committee on this. Some of these ideas are still
being formed. We actually funded some of these projects just as the last fiscal
year was closing and now we are waiting for a budget this fiscal year to carry
it on.

And then of course within all that as I have said we have created, everyone
asked us to do this, a working group of the Data Council that includes HHS,
Labor Department, Census Bureau, the White House, and so on. And here the focus
is on coordinating and planning the data to help us monitor and evaluate the
impact of health reform. And, again, our focus here is not to try to change
what the administrative data systems will be, but to try to look at from the
point of view of data resources down the road. We have already in the survey
area — one focus is on surveys. Another focus is on administrative data.

On the survey area we are actually pretty far along. We added questions that
folks thought were important to have measures of to the Health Interview
Survey, the MEPS, and the Census Bureau surveys, a couple of other things and
that is really at the population level to look at how is health insurance
coverage changing. What are the sources of health insurance coverage? What is
affordability? How is affordability changing? To some extent those measures
will populate our dashboard, but there is much more than that as well.

We also have begun a focus on the administrative data that we think will
arise from implementation of the Affordable Care Act as well as our regular
administrative data such as claims, Medicare claims, and Medicaid claims. We
have a project underway on multi-payer, multi-claims as well.

DR. CARR: Last time we ran short on time. We are really happy to hear this
in depth. One question I have is what is the planning for ICD-10 because all of
our learning related to quality is driven by the optimization of ways of
looking at ICD-9. With the introduction of ICD-10 there is I think going to be
a profound impact really at a very fundamental level in terms of how hospitals
report out, how we measure harm, how we measure even the core measures and very
far reaching in terms of P for P and even I think in terms of value-based
purchasing, all of that. Do you have a workgroup on that?

MR. SCANLON: We have an informal workgroup. Lorraine could probably update
you more.

DR. CARR: I am happy to have you continue, Jim. I didn’t mean to disrupt

MR. SCANLON: I think I am near the end. But, again, in terms of the health
reform data is one more other area I wanted to mention. Again, we are looking
at — when the Data Council looked across the department at all of the — what
was in the portfolio and where were people I think number one it was a fair
amount of integration already under way. I know folks think that the surveys
are not well coordinated, but they actually surprisingly some of them are
linked in a vital way, the Health Interview Survey and the MEPS. But a number
of these, for example, were integrating some of our emergency department
surveys and hospital care surveys. These plans have been underway for quite a
while. We will be heading in this direction.

The other area that I think we wanted to probably get the national committee
more involved in as well, but I talked to you previously and Todd Park talked
to you previously about our health data initiative broadly speaking. Here, the
focus is on how can you move the data we already have and others have out into
the community and the states and actually the whole technology, the echo
system, as Todd would call it, of the web to get the data closer to communities
and families and consumers. We have for the past 18 months I guess it is now
part of our HHS open government plan and data transparency plan. And Todd calls
it the data liberation initiative. We have been striving and several of you
have been at our forums to try to look at the data that we hold and are
developing to make it available.

We have always made it available to researchers and public health and so on.
Many of you were part of that community. This is a community of the web, the
googles, the innovators, and the developers to take the data we have and to
make it available more generally. I think we are probably only in stage 1 of
that. We don’t know where it will go, but I think everyone thinks it is worth
proceeding along those lines.

HHS has already posted probably close to 400 datasets and tools on
healthdata.gov. Now often the apps you see on your iPod and your iPhones are
usually geographically focused so you can find the restaurants where you are or
the constellations from where you are or stores where you are. They are largely
locational. We have a lot of data like that in terms of providing health care
providers, specialist providers, grants and so on. We will continue to make
that available.

The survey data is not really put together in a manner that you could put
together that way that we could look at indicators where that could apply to
local areas. We will be working on those areas as we move ahead. I think we
will probably want to get the national committee involved in some manner in
kind of getting us a bridge to the community in terms of what will be useful.
We don’t have a lot of details yet, but we are trying to think of how we can
move forward.

I think we are having actually our health data leads in each agency meeting
this Friday. I think we are briefing the Secretary, and I think we have invited
Justine to participate along with some other folks who can give us the views of
the outside because that is where we need some advice as well. Let me stop
there and take any questions.

DR. CARR: Okay, Blackford.

DR. MIDDLETON: Thank you, Jim, terrific update and of course as always just
an extraordinary amount of stuff going on. I guess the first thought crossing
my mind thinking about the people around the table here is with respect to data
liberation how do we assure that considerations of privacy, security,
confidentiality, effective use for quality measurement, and empowering
patients. Those kinds of considerations are all being considered as we go
forward with data liberation. And it does bring back to mind a lot of the
discussion we have had around the meta-data tagging and other types of ideas.

And yesterday at the NAHDO conversation, a very interesting core issue come
up around how small can a cell be. I wonder if we have to address an analogous
kind of thing and geospatial data. How well can you know where I am? Is it a
cell of 9 feet in radius or 9 yards or 90 feet? It is just another kind of
dimension on privacy that is really going to be central to all the geospatial

MR. SCANLON: Well, it is exactly correct. I think there is certain kind of
data as you indicated, Blackford. It is largely public already, but no one has
put it together. It is an institution or a business or something. It is not
quite the privacy of the individual.

It is becoming increasingly harder for us to even issue public use files as
you all know to the extent that it contains more detailed information about
hospitalization or a doctor visit or an HIV case. It increases the ability for
folks who have for whatever reasons you want to be able to isolate or
re-identify individuals. It just creates problems for us.

I used to think this was largely a theoretical problem, but the fact that it
existed and could happen even once, would undermine a lot of what we do. Now,
it seems to be quite possible to do. And there is more than one person. It used
to be one person who had a career doing this. Now, there are a lot of folks who
do this for business reasons and others.

You are exactly right. Quality data to the extent it pertains to a hospital,
a doctor practice, and certainly individual data, other data. It is a very fine
balance getting to be for making useful locally. That is really health care is
local. Public health is local. We kind of compromised by providing limited
public use files or indicators for an area, but it is hard to get below a
county. When I say we are in the first generation of this that is kind of
really what I mean both in terms of the data and the tools.

The next way we really have to dig a little harder. We have tried all sorts
of methods and, again, we would like the committee’s advice on this, to push
divisionally, the integral data without identifiers available for analysis. And
a lot of folks want not just national data. They want state data. They want
county data. They want regional data. Probably like census track data if they
could. And we certainly have arrangements to get some of that data under
protected research data center circumstances, but folks are not entirely happy
with that. You either have to go on site or you have to go one of the census
data centers. It is not quite where it should be. In fact, we will be looking
at that. But, again, it is becoming more complicated now.

What I see now is that our public use files even are what we thought we
could make available. We almost have to take out a lot of the geographic
identifiers. There are certain conditions by prevalence or other
characteristics which just make it easy not so much at a state level, but at a
sub-state level where folks who wanted to could put information together coming
up with genomic data as well. We have actually had from NIH a request to help
with resolving some of the privacy issues with genomic data as well. Again, it
is a challenge. We will just have to balance as we move along.

DR. CARR: I think that really ties in with a lot of the work we have been
doing on the communities and we will have maybe some of that discussion when we
discuss the report and also building on some of the input from yesterday. I
think we are well positioned to deal with that.

DR. FRANCIS: What I wanted to say was exactly that I think we started some
extremely important work on addressing. Basically where we are coming from is
thinking about how to — I don’t want to say reconcile because that implies
that the values of data use and data protection are in conflict, but how to
maximize both. My question is actually just a process one which is how can we
and you work together in the most efficient way to keep us going down that
path. This might be by way of an invitation to you either this meeting or the
next meeting to come to the privacy and population subcommittee meetings. I
don’t know if that is the best way, but basically let’s get together as much
and as quickly and as effectively as we can.

MS. MILAM: Jim, you were talking about the learning health system and
mentioned the need for perhaps standardization across clinical, administrative,
and survey data. We have heard that really twice from NAHDO now; once in their
testimony in May and then yesterday in a couple of areas. It was just a
definition of personal health information, some standardization across patient
demographic fields, and a unique and stable physician identifier. Would these
be areas that would be helpful to the department and what would be the best way
to help the department with that if that is indeed where you think we might
take the next step?

MR. SCANLON: Well, I think on standards for demographic data I think we
started that already with our data standards. But I am not sure the same data
standards apply to administrative data because you can’t really collect. I
guess we view this as three surveys and research. You more or less have control
over the interview and you can add as much data. The whole purpose is getting
information. Administrative data — you don’t have all the degrees of freedom
to ask all of the detail or all of the questions you want. When we expand, for
example, the race/ethnicity categories, I don’t know that that is going to work
for administrative data. It might.

Where there is more room, I think, is certainly electronic health record
data where you almost use the capability of EHRs, number one. Number two, you
are in a clinical setting so folks understand why you might be asking to the
extent that they are clinically relevant or public health relevant folks would
understand why you are asking such a question.

For language, for example, in surveys we can ask questions about primary
language or English proficiency because there are epidemiological relationships
there, but we can’t ask about every language that everyone speaks. We probably
know the top 10. It is sort of meaningless in a survey even for analytical
purposes. The same for race/ethnicity in a survey with a sample of even 50,000.
We can’t ask about 500 Indian tribes or even some of the smaller ethnicity
categories. And it is not necessary because we couldn’t make estimates anyway.
But in an EHR language and ethnicity could be related to treatment or
communication or the encounter or prevention itself. There is a direct linkage.

Number one, I think we don’t know quite how to get there yet, but I think
there is some thought and certainly it is not new that there is needed a
demographic dataset for EHRs, a minimum dataset for EHRs. I think there is some
work underway people tell me. I think if that could move along a little better.
Again, I think this is very — clinicians, I think, understandably resist the
race/ethnicity questions and so on because it is not something — it comes up
in public health. It doesn’t come up in — practice that much, but why are you
asking this. I don’t discriminate why we are doing this. There is sort of an
educational part of that as well. Health plans as well. I think those are the
kinds of standards I think.

I am not sure what the pathway is other than is it an ONC? Is it an NCVHS?
Is the industry already coalescing around a minimum dataset of demographic
variables? Since it would apply to EHRs, it would be nice for the industry to
come forward. It is easier for us to adopt industry standards than to make up
our own.

Administrative data is very tough. We have to look at HIPAA. Anything we can
standardize is helpful. Though again, there is just not much room on the claim
or the enrollment form for a lot more. We have done this before. You have to
get it at enrollment. It is hard to get it on every claim. Medicare still
hasn’t been able to solve this problem. But the definitely the idea of standard
is certainly a minimum demographic data set of standards plus all the other
suite of standards we already have now. The classification systems that we have
already used and they are already incorporated into our HIPAA data standards.

DR. CARR: I have Vickie, Mark, Walter, and Marjorie. I want to make sure
that we leave time for Lorraine. Marjorie, did you have a response immediately
to the dataset?

MS. GREENBERG: I think this relates to though I am not sure I see it
addressed in this presentation, but the whole meaningful use area and
population health because the committee of the HIT Standards Committee has made
recommendations related to demographic areas: race/ethnicity, language, payor,
et cetera. There was a workgroup or a task group and its recommendations were
endorsed by the Standard Subcommittee or committees. They have gone to ONC. And
I don’t know whether that will be phase 2.

DR. SUAREZ: I am a member of that. Just to clarify, the recommendations were
in the surveillance side. The race and ethnicity and all those were
recommendations made last year and incorporated into meaningful use stage 1.
That is already in place. What came out of the tiger team as we call it in the
HIT Standards Committee was a series of recommendations around immunization
registry or administrative data basically eliminating the duality of standards
that exist, recommendations on syndromic surveillance reporting, and
recommendations on the lab reporting. Those three were focused.

We tried to expand the discussion to go beyond those three and try to talk
about what is the real set of common standards across public health messages.
But we really didn’t get to that. The main recommendations were to address the
duality of standards that exist in meaningful use stage.

MS. GREENBERG: What about the recommendations of the vocabulary taskforce
and for the clinical measures, for the clinical quality of care measures that
came out in August? Those are the ones I am talking about that did have the
recommended vocabulary and terminologies, et cetera for the whole range of

DR. SUAREZ: That is a different set of recommendations. That will be part of
meaningful use stage.

MS. GREENBERG: I think that is a vehicle. That doesn’t mean the national
committee can’t work on it as well.

DR. MAYS: Like Blackford said, I think it is a great report and it is also a
very exciting time in terms of as we think about population health. I just want
to offer a comment and then I have some questions.

One of the things that seems to be a theme throughout this is the whole
notion of as we think about collecting data, we have to, one, make sure people
participate. And I think part of the participation has a lot to do with issues
of privacy and confidentiality.

One of the things that the Census Bureau did, not this time, but for Census
2000 was they spent an enormous amount of time working with community groups,
working with a PR campaign so that people understood why their data is being
collected, how the data is being used, and the ways in which — those were the
three things because at the time I was part of the React group for the Census.

I really think that we need to think about whether the department really
needs to launch that because it is not about just the community. It just struck
me as you were talking about even the providers. They are very nervous about
asking people about race and ethnicity. We haven’t given them enough
information so that they know, for example, how to respond. We don’t know all
of the reasons. The assumption is I am not going to get care and that is not
all the reasons, for example. Some people don’t want to give their race and

I am really going to suggest that one of the things the department does is
to put this whole notion of whether or not you need to launch some kind of
campaign about data along side of the issue of data collection because
otherwise we are going to be stymied. And then I also think that as we worry
about survey rates dropping and everything we need to do something about that

Let me just get to my questions. The first question is really revolves
around this notion of again as we collect the data and we start to get
granular, one of the things is we don’t have as much newly developed
methodology around small group data use. And I am wondering if the department,
for example, can think about how to stimulate either funding to NIH or AHRQ to
get the statisticians back into studying this because otherwise what we are
going to do is we have to keep dialing back. We have done a great practice, but
we don’t have the methods of how much to impute, what instances to impute in,
what kind of statistics we can do. That is one question as to whether or not we
can do that.

The other is around the LGBT and I am not sure exactly what we are being
asked to do, but we are ready to do stuff. The issue there is coding, one of
the things that is also not talked about as a person who has used a lot of the
NCHS datasets and some of the other datasets. The issue often becomes that
because the issue of how family structures, partnerships, et cetera go there is
a lot of coding errors. I am hoping that as you go through the collection of
data, it is not just about how do you ask the question. It is about practices
for coding. And the question also is one of whether or not you all are going to
focus on subgroup and that is a difference between sexual orientation identity
and sexual behavior. The notion of using MSM and WSW — there is a whole range
of those. From a health perspective HIV has taught us that we need to do that.
I haven’t heard whether or not particularly in the surveys that is going to be
something that is going to be dealt with.

My third question is where is mental health? In Healthy People 2020 what
happened is that quality of life and well being had been put on the table. Many
of us are pushing to make sure that by Healthy People 2030 we have actually
come up with what the measures are. Bob Kaplan is not here, but I am going to
speak for NIA a little bit which is NIA has put resources into developing
measures of well being. It is just around the corner in terms of being able to
look at having better measures.

But the question of the extent to which this is going to get into the NCHS
type of other surveys mental health was actually dropped to some extent. I am
just wondering where we are on those and I will stop there.

MR. SCANLON: Let me start with number three.

When we formed this data strategies group under Data Council, we actually
looked at one of the areas for integration was mental health — number one with
substance with other behavioral health and number two with regular health.
There are a couple of promising developments. The household surveys at SAMHSA
will now be asking mental health measures on a more continuing basis.

DR. MAYS: DSM level?

MR. SCANLON: Well, actually it might be. We will find out. We are working
with Health Interview Survey to try to get some measures. They have included in
the past, as you remember Vickie, sometimes it would be a depression scale or a
serious mental disorder scale. That is a promising area for us to be moving in.
The integration we were speaking of is not just structural and alignment of
forces, but it was actually content so mental health. I think there are some
promising areas there.

On the coding issues on the LGBT issues, this is an area where it is very
clear that you have to separate behavior from identity from identity. I think
everyone certainly at HHS is now quite aware that this is the way we have to
approach it. We have had a long history going back to HIV and AIDS. We have
already crossed the threshold many years ago on behavior and we have a lot of
experience and a lot of surveys and research dealing with this behavior and
people understand why we are asking that. With orientation and identity we
clearly have less.

What we are trying to do now is NCHS and I guess we can have NCHS brief the
committee. They are now testing in Health Interview Survey questions dealing
with orientation. It is basically orientation. I don’t think they have ever
asked about behavior in the Health Interview Survey. Those are Census Bureau
interviews and they are very skittish about sensitive questions. In identity I
think the thought is there still needs to be more work done.

We actually in my office a while back asked some researchers to do a
literature review on the state of measurements on LGB. You may remember,
Vickie. It was quite a while ago. And to tell us the extent to which they
thought there was a potential for standardization that a standard exists. And
the conclusion then was no. There was a nice review of how these questions were
being asked and better practices and so on. But basically the conclusion was
there was not a standard yet. Variation was still a good thing. It was not a
standard to imply. That may have changed now. I think we at least have the
basis for testing that in Health Interview Survey.

On the transgender side from the listening sessions and we are going to have
one more, it is clear that there is a whole range of views here from adding one
question to a whole battery which we really have to sort out. And there is a
number’s question as well in the survey.

And coding, I couldn’t agree more. You remember a family structure. Every
survey does — I am probably getting into too much detail. Every survey asks
who is in the household and how would they relate it and so on. A lot of
politics and other things, around this. The Census Bureau was now able to
estimate domestic partner households and so on. We might be able to do that in
our surveys as well.

DR. MAYS: — the statistics —

MR. SCANLON: Which was the first one.

DR. MAYS: About the funding of small group statistics.

MR. SCANLON: Do you mean small populations?

DR. MAYS: Methodology for —

MR. SCANLON: We have a couple of projects underway with NCHS and others to
look at are there ways for special populations and for state and local. Are
there ways to make model-based estimates? That may help us a little bit with
the small populations. It will certainly help us with state and local. You have
a survey, but there is a way to make estimates through regression and other
model-based approaches as well. We just started that. We will be exploring that
as well, but we are open to any other.

Periodically we have a workshop on special populations. Usually it means
small populations or hard to reach populations. And we are always looking at
methods there. In many ways you are ultimately forced to go to targeted
studies. This is the strategy for race and ethnicity data that we have
proposed. You can go through over sampling and pooling data and linking and so
on. You ultimately get to the point where it is really a targeted study. We
would like to get NIH to put some money forward. I think that is what you are
mentioning both on the NICHD side and the minority center side to be able to do
this. The surveys you can push so far, but it is just not a fit anymore.

DR. CARR: Mark and then that will be our last question and then we will move
on to Lorraine.

DR. HORNBROOK: Jim, I have a question. In our report on HIPAA that we
reviewed for today’s meeting, there is some sort of passing reference to coders
using an ICD-9/ICD-10 crossover to evade in some sense the demands of learning
ICD-10 so they just keep coding in ICD-9 and just run it over through the cross
over and submit to ICD-10 codes. Is that something addressed in the regulations
or should the committee bring that up as something we need to be concerned

MR. SCANLON: I will defer to Marjorie and Lorraine. We have talked
internally about mapping a cross over. It is a little complicated. It is a one
to many. It is not a one to one. We have NLM helping us with that as well.

DR. HORNBROOK: You want the provider at the point of service who knows the
person to put the ICD-10 diagnosis correctly using medical decision not let a
computer do it for them.

MR. SCANLON: Strategy wise I am just not —

DR. CARR: Lorraine, did you have an update on the ICD-10? One of the things
I think we need also is a landscape of all the places, the current
administrative data goes. It is interspersed with everything in terms of
monitoring, evaluating, P for P, value-based purchasing, readmissions, all of
that. It would be helpful I would say at an upcoming meeting perhaps in
February to have — what is the universe of places touched by ICD-9 quality
data and who is overseeing that crosswalk.

MS. GREENBERG: I will defer to Lorraine on what obviously CMS is doing. We
do have a workgroup in CDC that is looking at both the surveys that use ICD as
well as — I was just saying that we have a workgroup that is co-chaired by
Donna Pickett and we can get a report from that and Seth is involved with that
as well. His staff is involved with that at CDC which we had already started
one at NCHS, but now this is more broadly all of the data systems. I think we
have identified nearly 100 data systems within CDC that will be impacted by the
change. They do use either diagnosis or procedure or both classifications. I
think the work that they are doing — they have had some webinars that are open
also to state public health departments. The work that they are doing I think
will be helpful although it is focused primarily on CDC data systems. It will
have implicates — a lot of their data systems particularly outside of NCHS
draw from data that is provided by states. I think that will be helpful.

Mike, does AHRQ have any kind of systematic group looking at the impact on
quality data or is that being led by CMS? I guess we can hear from Lorraine
about that.

DR. FITZMAURICE: I can’t answer that directly. I can tell you that we have
been discussing with CMS of how to be more specific in the quality data. We
have also been discussing with NQF as well. In fact, NQF approached us on that.
I don’t have an answer for you. In 2 months we will have things all set up.
These are very loose discussions at this point.

MS. GREENBERG: I think the idea of a session in February is a good one.

DR. CARR: I would like to see Quality take that on because the impact is
tremendous, even in terms of understanding our quality if we have disruption in
the transition, we may have misrepresentation of the quality. With that I thank
you, Jim. This is tremendous. There is a number of take aways. Lorraine,
handing it over to you.

MS. DOO: Well, thank you. It was a very interesting discussion. And I guess
working a little bit backwards with the discussion you were just having on
ICD-10 I will give you a snip it of what we are doing, but I do think it would
be well worth having the folks certainly at CMS that are coordinating the
industry work as well as what is happening at CMS specifically as well as what
they are doing with all of the other federal agencies on preparations for
ICD-10. I think the timing would be good because there are a lot of
implications and as Jim alluded to earlier, this is not just electronic health
record implications, but all clinical quality measures and physician practices
and payment reimbursement and just behavior changes. I definitely think that we
can get you the people here who are working on that largely from CMS and
federal perspective coming out of our office. We will make sure that happens
for you.

DR. CARR: Thank you.

MS. DOO: And then just a grounding because we are all working on so many
interesting things. From the CMS perspective we were reminding ourselves the
other day that we are responsibility for about a trillion dollars in health
care in our administration of the Medicare and the Medicaid and the CHIP
program. Much of what we have been doing when you think just “Medicare and
Medicaid” our scope actually has expanded even in the last few years with
the Affordable Care Act because now we have the Center for Consumer Information
and Insurance Oversight which is spearheading the health reform initiative and
health information exchanges. We have a center for innovation for Medicare and
Medicaid which is doing a lot of very progressive work. You may want to hear
them at some point.

And then the Center for Program Integrity, which is doing some incredible
things with fraud prevention and identification. Even just in the four or five
algorithms that they are testing have already had remarkable results which
might be something else that would be of interest.

You all and what we are doing here at CMS specifically and OESS is this
whole health care transformation and information exchange which affects every
single one of these committees.

Just to reiterate what Jim was saying, but I will try to do it in Todd
Park’s accent, which is going to make tremendous differences in all of our
work. And I think you have already have had extensive discussions related to
the PCAST report. Now with all the work happening on Web 2.0 and Health 2.0,
the mobile era, cloud technologies, some of these new paradigms, those things
that are happening at the HHS level and the CMS level are obviously affecting
what we are doing in our small little world here in OESS.

The main things I thought other than inviting us to talk more in depth on
some of these topics you are interested in is we talked a little bit about
meaningful use last time. I assume everyone is pretty clear about the
distinction between the Medicare and the Medicaid program that everyone is
registering through an online system, this national level repository, which I
think has been introduced before. But the Medicaid registrants, if you will,
are adopting, implementing or upgrading certified EHR technology. And the
Medicare participants have to actually be meaningfully using certified EHR

The numbers are continuing to go up. I think they are probably lower than
many people expected, but I still think that they are good given the timeframe
for identifying and implementing and using the technology. But the numbers I
have actually are now for September. There may be something else posted for
October although I don’t know if it is up yet. So, year to date, it looks like
for Medicare side is over 88,000 eligible professionals and hospitals. And on
the Medicaid side again just for either the adoption or implementation or
upgrade is a total of about 24,000. It is a fair number of registrants that
have said I want to participate in this program.

In terms of the actual payments that have gone out, for eligible
professionals it looks like year to date we have paid about 3700 and for
hospitals 8. The numbers, again, from those who have not only registered but
have been able to successfully test are not as large as some might like to have
seen by this point, but they are definitely on the right trajectory up. And on
the website which we can send out — if you go on that site, you will see the
amount of outreach and educational efforts that is going on from CMS to help
promote the adoption and to identify certified systems that would be useful.

I think one other thing that this group would be interested in is what the
providers are attesting to tends to be on the EPOE, ePrescribing and drug
formularies. And there is some on public health objectives. I think that was
something Seth was interested in last time and reportable lab results. One of
the things that might be of interest to the group is for us to come back and
really talk about the kinds of professionals that are either registering or
attesting and then what they are reporting on. If you do that in February even
in the first or second quarter of next year, there should be some data that
would be relatively reliable that would give you some indication of how the
certified technology is actually being used. I will put that out as an offer
and we can bring the right people to the table.

The other thing and I know we will hear about that probably in the HIPAA
report. There is going to be a letter that we are approving. On the
administrative simplification work, there are two regulations that are in
clearance and will be going to the department shortly for the second piece of
the clearance process. That is the proposed rule for health plan identifier and
an interim final rule for the adoption of a standard for electronic funds
transfer. We will be working on the inner final rule for the operating rule for
eligibility in claims status. As I think I have reported, we did not get
significant or substantive comments. We will be putting forth communication to
industry on how to move forward on implementing those operating rules for the
2013 deadline.

And then obviously there will be a number of other rules coming out over the
next I would say 6 to 7 months both compliance certification as well as
operating rules for electronic funds transfer.

I think that is an update and let me leave it open to all to see if there
are questions or something specifically that I might be able to answer.

MS. GREENBERG: This isn’t a question, but just — Susan suggested in the
audience here that it is better if people talked directly into the microphone.
We always ask that people do that anyway, but I guess in particularly we would
here because of this echoing that is going on. We apologize for it.

DR. CARR: We have a couple of minutes. Walter, I had to preempt your comment
to Jim. We have a couple of minutes if you would like to return to that topic.

DR. SUAREZ: This is going back to the discussion that we were having. My
comment was going to be all the comments that people were making really
enhanced my thought of one of our priorities at least one of the things we are
thinking about in our subcommittee on standards is really the need to develop a
common data and information reference model for public health. Many large
organizations are going down that path. We are about to receive a tsunami as
they have been calling it of information from not just administrative data, but
EHR data, clinical data, all sorts of sources, survey data. And organizations
are internally beginning to look at how are they developing internal
information models that allow their internal systems to talk to each other
under data could be harmonized and interoperable.

I feel like we are lacking that in the public health arena. We have so many
sources, so many ways of defining the same thing. In my mind I think it would
be very helpful to begin to work towards a common information reference model
for public health that applies to and is able to be used for the multiplicity
of activities that we have in public health whether it is surveying, whether it
is administrative data if we know it today, whether it is clinical data. There
is reported public health, all those things. That was going to be my comment.
It is really an area to focus on into the future because of the developing a
common information reference model to public health.

DR. CARR: What I would like to do is to go back to — Jim mentioned a number
of things that the committee could be helpful on and Lorraine also mentioned a
couple of things of presentations we would like to have. Let me just see if I
can get back to that.

One question, Jim, you mentioned that there is a dashboard of internal use
on the 10 measures. Is that something that we would be able to see?

MR. SCANLON: Yes. You can’t see the internal version purely for security
reasons, not because of the data. Most of the data has been published already
anyway. Probably by the next meeting. I certainly can send everyone the domains
and the measures paper wise. By the way, there are probably another dozen
dashboards more specific that are being looked at, for example, exchanges and
state market, insurance markets, for example. Folks are thinking about what
would you expect. What would you want to measure at a state level in terms of
insurance market and the state climate related to the exchanges? But certainly
the overall dashboard we should have that publicly on the web. I think we were
aiming to have it in 2 months. But I certainly can make it available to the
committee on paper.

DR. CARR: In 2 months it will be available on the web with the results of
where we are.

MR. SCANLON: Yes. And what we do is update, for example, health insurance
coverage. We get the latest we have, but it is — in the case there it is
updated. We probably use annual or semi-annual. Most of this is annually

DR. CARR: That would be great. Blackford.

DR. MIDDLETON: I think it is an extremely interesting idea. Think about
using the dashboards to more actively monitor, if you will, Nation’s Health for
which we are responsible for the data being appropriate to measure. In a way it
creates for NCVHS a more comprehensive feedback mechanism with which we can
deliberate upon the future needs if we are looking at the current realities.

DR. CARR: Exactly. That was my thought. I think if we have that available
and sort of even incorporate that of where we are on each of those and actually
Lorraine offered giving us an update on meaningful use as well. I think having
those data would be very helpful. Bruce.

DR. COHEN: Thanks. I have got one question, Jim, and several observations.
The question is section 9007 of ACA requires that nonprofits do community
health assessments every 3 years. Is the department planning to offer guidance
and assistance in formulating these community health assessments?

MR. SCANLON: I don’t know where it is. Let me find out the details. Let me
check with the office. Folks are looking at that and how it would be
implemented and how that requirement would be implemented. But I am not aware
of the details so let me do some checking back.

DR. COHEN: Observations. Having the privilege of coming from Massachusetts
where we are a couple of years ahead in health care reform related issues
observations about collecting data related to evaluating and monitoring
implementation of ACA. Measuring changes in utilization access is really
relatively straightforward. The tough part is thinking about measuring impact
and outcomes. I think the department would do well to focus on a variety of
those issues particularly in the areas of clinical prevention and population
health prevention and coming up with essentially a menu to focus on what are
the short-term and long-term anticipated health improvements one would expect
to see if in point of fact there are improvements in access to care. I think
that is really where the potential population health payoff is.

You mentioned issues around confidentiality. You said that the issue is not
a state level issue around identification. In fact, there are more than two
dozen counties that have larger populations than our smaller state. We are
finding potential breaches at the state level and I just want to caution that
even public use data at the state level is an issue.

Vickie also talked about education. You will hear this from me pretty much
at every meeting. Training for the collection of demographics particularly race
and ethnicity data is crucial for maximizing the quality of these data and
there is a lot of work going on. I know in Massachusetts we developed training
for admission clerk and intake workers. And it made the conversation around
collecting these data a positive constructive one rather than adversarial one.
I urge the department to invest funds in training for the collection of these
data. And we found the clinical encounter might not be the best place to do it,
but there are lots of other opportunities for collecting these data.

Small area of research. I am really glad that NCHS is looking at model-based
estimation. The BRFSS program and states have already begun this process and I
certainly encourage NCHS and other parts of the department to work with CDC and
the BRFSS program. Small area estimation is a huge issue for local health. I
think the techniques are out there. More federal resources and technical
assistance would benefit everyone. Thanks.

DR. CARR: Thank you. Marjorie had a comment. Larry had a comment. We will
trade 5 minutes of our break for these comments.

MS. GREENBERG: Thank you for your comments, Bruce, which I think they are
all promising areas. I just wanted to mention that yesterday at NAHDO which was
focusing on analytics, accountability, and action. The analytics panel had a
few people from — and you may know them or know of this work, but the State of
New Mexico. And it really made me think of what you had mentioned because they
have made a concerted effort to improve their collection of data on race and
ethnicity including through legislation and through training and all of that.
It made me also think that although the conventional wisdom is you can’t do
that much about it. It is worthy of a concerted effort and when you do that it
seems to have paid off. There is still always going to be problems. But I do
think that we need to combat that conventional wisdom that we just can’t
improve the data.

DR. CARR: With that we will take a break and we are due back here at 10:30.
Why don’t we make it 10:35 sharp? Thank you.


DR. CARR: We are ready to resume our agenda. I will turn this over to Larry,
Leslie, and Sallie for your presentation of the population, privacy community
health data report for ACTION.

Agenda Item: Population/Privacy Community
Health Data Report for ACTION

MS. MILAM: I do know we are missing Larry and Leslie.

DR. CARR: That is okay. We still have to start on time.

MS. MILAM: Larry has the agenda, but I think I remember it. As a committee,
we have discussed the report a few times. Larry and I were thinking we would
quickly walk through some of the mechanics of the report to tie up some loose
ends and then get into a discussion of connecting dots. I think Larry was going
to check with Leslie to see if she had anything else. But the first area we
thought we would find out if there are any errors or misrepresentations in the
report. I will turn it over to Larry.

DR. CARR: We will start with that. Are there any comments on errors,
corrections, concerns about the report as written? Omissions, I guess, we are
talking about. I am going to say my two things which I have already spoken with
Larry and Sallie about. One is that I do think we need to incorporate the
triple aim. I think we are saying all the things that support the triple aim,
but I think it is important to articulate that.

Second is I think — first let me say it is a fabulous report, an absolutely
fabulous report and I commend everybody’s participation. It is really an
outstanding piece of work. I would like to ground the introduction into the
figure from our statistics for the 21st century of population health
and context and community and so on. I think that a little bit of discussion
about where we were in 2002 taking even the verbatim actually out of that
report of what were the challenges and then linking that to here we are 10
years later and we are better than we were and we have more to do. I am happy
to help offline think about how we might incorporate that.

DR. GREEN: That sounds great, Justine. We also wanted as we get started on
this thank you all. This has been a fairly amazing robust conversation over a
period of months. And we have had from almost every member of the committee. It
is our belief that we have incorporated into the report the committee’s
suggestions and will. We think it has made it quite a bit better. And we want
to express appreciation for that.

I want to go right for where Justine was headed, but before we do we want to
make sure that everyone sitting at this table tells us if you have seen
something wrong. If there is an error or a misrepresentation of something, this
is your moment in time. Tell us about that so we can fix that.

DR. HORNBROOK: It is more a question of sensibility on page 13, the
examples, duration of paid maternal leave for gender equity. Most modern
families do both maternal and paternal leave and it is up to the family to
decide which they do. I should think it would say maternal/paternal leave, not
just maternal leave.

DR. GREEN: Are you saying that is a misrepresentation of the way families

DR. HORNABROOK: Yes. At least where I am working with people I have to
supervise. The men are likely to take leave when the child is born as women.

DR. GREEN: Thank you. Are there others? Shall we do Susan’s list?

MS. MILAM: I don’t know that we need all of it, but I think we need to talk
about some of the additional recommendations and federal action that new
appendix 3 that are on Susan’s list. Can we start with appendix 3?

DR. CARR: We have a couple of things. We have the appendix and we have the
graphic. Do you want to start with the graphic or the appendix?

MS. MILAM: Susan, looking at the graphic the one thing I was wondering where
data stewardship fits in because that would be separate from privacy and trust.
Might it go in that same bubble?

DR. CARR: Could you say an introduction about what is the — the graphic is
called community as a learning system.

PARTICIPANT: It goes on page 19.

DR. CARR: Can we put it up? Are we able to put that on the screen this
graphic? You sent it to us. I have a copy.

MS. KANAAN: Some of you have it and I made 10 copies. Some of you will have
it on your computers and I have 10 hard copies.

DR. CARR: Why don’t you go to the appendix and I will make a copy of this
and bring it up to that computer and get it up there? While I am doing that,
why don’t you move onto the next topic?

MS. MILAM: Susan, you included a new appendix 3 and had some questions as to
whether it added to the report whether we wanted to include it. I know I had
some initial reactions to it that I can share to open up the discussion. A lot
of the content seems to be an add-on to a discussion of gaps and opportunities
that we already have within the report.

MS. KANAAN: We moved that section.

MS. MILAM: Completely?

MS. KANAAN: That was a decision we made at the last meeting to remove that.

MS. MILAM: Well, I guess I am looking on pages 26 and 27. We talk about
needed an infrastructure. And one of the bullets is a privacy and security
framework. And a couple of the items on page 38 in the appendix really are
subsumed by that general area and maybe addressed by other organizations. I am
not sure that it adds anything in the appendix.

MS. KANAAN: The appendix just to give you a little bit of background I am
not holding a brief for it particularly, but the appendix’ content was
suggested some of it by Jim Walker, some by Blackford, and it was really
thinking about more specific questions that might be addressed in the future
and then I have adapted their language somewhat. I am not sure myself that we
want to go there in the report which is why I wanted to raise the question.

MS. MILAM: I guess the one specifically I am looking at like the fourth
bullet suggestions for aggregate data representation standards at the
population or aggregate data level. From a privacy standpoint that is a big
component of what is underlying that privacy framework in terms of
infrastructure. We are in appendix 3 on page 38.

DR. HORNBROOK: Sallie, isn’t the issue then how do we know whether we can
still draw meaningful inferences from aggregated data? What are the right
aggregates that meet both value for drawing inferences and protection of
privacy? I think that was the trade off issue there — two completing

DR. GREEN: What is the will of the group about this appendix belongs in the
report? That was enthusiastic.

DR. HORNBROOK: I think it belongs here, but I didn’t know whether there is
somebody who had strong interest about making the report shorter and you had to
really cut out stuff because sometimes these reports are too expensive to keep
adding pages to.

DR. FRANCIS: One thing we might want to think about when we discuss this in
the subcommittees about whether to include it would be whether to have a little
prefatory paragraph that says something like this is not meant to be exclusive
and this is not meant to be the purview of any one particular group. And we
could add the concern or that we could take the point that Sallie made about
that one sample set of issues. This is a list of some of the important things
that somebody has to deal with.

DR. GREEN: I personally like that idea a lot. I want to speak in support of
including it like Susan said. We decided to do that at the last meeting so we
need a reason to change our minds. It looks to me as if it should go in, but it
probably needs to be explained which I take to be Leslie’s suggestion.

DR. FRANCIS: I think that would be great. That would address my concern.

DR. HORNBROOK: This whole issue is about data. We are trying to teach people
that there is more data out there and they need to understand a lot of things
about the fact that it exists, how to get it, how to use it. There are all
kinds of levels of data about data. I am working on it now and trying to help
researchers understand the HMO research network database. It is infinite
numbers of levels, of course the same way with the public.

How are you going to teach them to use the new data on medical loss ratios,
for example? That should be part of a community health report. This whole thing
and this appendix I think is part of that teaching exercise. I think that when
you are talking about knowledge management guidelines is really talking about
the very essence of trying to teach people about how to learn about data.

DR. MIDDLETON: There are really three different important pieces. One, the
summary of the communities I think is very illustrative and useful for people
to see what is going on by real world examples and names and places. The
research agenda, the last part, I thought as Leslie said, is useful to describe
things that communities might want to start worrying about and things that
funders might actually want to start sponsoring research on because this is
green field. This is new territory.

And then lastly, I guess, the middle piece I just like for completeness.

DR. GREEN: I don’t want to prolong this, but a moment ago in our first
session Walter made a summative statement about how the departments and federal
agencies in the private sector that we are lacking and agreed to information
model if I heard your point right. Does that need to be called out in this
appendix or can we just leave that to another day?

DR. MIDDLETON: Can you restate the question?

DR. GREEN: The way you presented this is sort of a research agenda. I was
just remembering Walter’s comments from this morning about our need for an
information model that people can work around. I took his point to be that we
still don’t have agreement across agencies, public/private sector about the
information model we are working toward. I was asking a question. Is that
something to leave for another day or be negligent and not calling that out in
this appendix?

DR. MIDDLETON: My own thought would be that is an extraordinarily large
topic. That doesn’t necessarily have to be added in at this point to this.

DR. COHEN: I think actually if you look at the envisioning of federal role
on page 28. Bullet 6 begins to address that issue. I don’t know whether we want
to expand that language to reflect the broader context of Walter’s earlier
comment, but I think that would be a place making sure that is emphasized.

DR. SUAREZ: I do think that it would be valuable to make a reference. There
is a whole body of literature and research and dissertation around information
models and health information models. There are logical information models and
there is physical and all sorts of ways of categorizing. We don’t want to
extend the discussion or the debate or the documentation of that, but I think
it will be valuable to reference that.

DR. GREEN: Susan, can we just do that on number 6 on page 28? Can we just
add right there? We need an information model.

MS. KANAAN: I will consult with Walter about the language.

DR. HORNBROOK: Speaking about information models at the break we were
talking about social determinants of health and of course the information model
should include linkage from health care systems and educational systems into
welfare systems and the public safety systems, probably into the defense
department for exposure to trauma.

In one sense you get to the big brother notion that you have a uniform
identifier that tracks you for the rest of your life and there is a way to
track every single crucial incident about you in order to understand your
health risks because you are going to be paid for by somebody else’s dollars
when you get sick. There is that vision that sits out there that many of us are
aware of in a research sense. But when you get to the public policy sense, it
is kind of scary.

MS. KLOSS: I guess I have a question. Last week I heard a presentation by
Todd Park and he mentioned community health as one of the initiatives in the
liberate health data and referenced healthindicators.gov. I have read the
report very carefully, but I just don’t remember seeing that listed as a
reference or a footnote. I thought that if that is relevant we may want to
address it in acknowledging that work has been done under the envisioning of
federal law.

DR. GREEN: Do you have a suggestion where to do that acknowledging?

MS. KLOSS: I think under envisioning a federal role that in fact there is a
set of indicators and I haven’t gone to study them but I think we may want to
acknowledge it so that we aren’t missing work in progress.

DR. GREEN: Susan, do you know where to put that?


DR. CARR: As we think about how to use our time here, I think we are talking
about things that are missing and restructuring. I think we want to talk about
this diagram. And we also want to think about next steps. I see a potential for
a letter coming out of this based on Jim’s presentation this morning, the
issues that are circulating, the things that we heard at NAHDO yesterday, the
things that we have heard at these hearings perhaps some recommendations or at
least shining a light on this that more work is needed in these areas. I think
if there are other kind of changes that folks feel we need in this that are
enhance it, but are not substantive let’s get them to the subcommittee today.

I would like to move now to this diagram and talk about — let’s here first
about the reason for the diagram. What is it telling us and then let’s give
feedback about whether it says what we want it to say. I have Linda, Vickie,
and Susan.

MS. KLOSS: I had suggested that Susan consider taking the narrative, these
five components out of the narrative and just including a diagram. Part of it
was formatting to open a little wide space and create some additional visual
interest in the report. This list which was woven into narrative just seemed to
pop for me as something that could be helpful as a graphic. And then she did a
really nice job putting it together.

DR. CARR: Vickie.

DR. MAYS: I don’t know if you want to stay with this because mine actually
is a different topic.

DR. CARR: Let’s continue to discuss the diagram. Susan, Mark.

DR. MAYS: I was actually just going to say what Linda said.

DR. COHEN: I really like this and thanks for putting it together. I would
either change communication to dissemination and data sharing rather than
communication or find a place for dissemination. One of the issues around doing
community needs assessment is getting the information out there so that it is
actionable. The data uses around focusing on developing policy and programs are
good, but I would highlight more just informing the community, providing this
data for NGOs for their use. Dissemination is a key output of needs assessment.

MS. KANAAN: I certainly intended for that to be implicit, but I think
dissemination is a better word. Thank you.

DR. HORNBROOK: This is a closed pentagram. I don’t know what you are trying
to produce unless you want to argue that privacy is a goal or community trust
or community identity. There is no mention of health. There is no mention of
respect for individuals. There is no mention of equity or improving equity or
moving disparities and there is no mention of what is this engine supposed to
be working towards? The social good obviously, but do you want to be specific
about that? Do you want to have something that is a circle around the whole
thing that says what we are going towards or something inside the pentagram
inside that says what this is all about?

DR. CARR: I struggled with the same thing. It took me a while to figure out
that each circle by the various arrows is connected to the other circles and
some arrows are wide and some are thin. I was trying to interpret is there a
message there and also I think that the diagram depicts the interconnectedness
of a learning system more than the community as a learning system. I think we
have to have alignment of the headline with a picture or the picture with the
headline. I think all the concepts are good, but I had the same challenge in

I think we want to get clarity of what is — because the picture as we have
seen is very central to our NHII report, our statistics for the 21st
report. This would be aligned with that, but I think we have to get clarity.

MS. KLOSS: I would just say that I would suggest that we think about
changing the title of this because if you read the narrative, these are
described as factors that enable communities to function as a learning system.
I think the title as it is showing here is much broader than the original
intent of those five elements.

DR. CARR: The recommendation is the title now become factors that enable
community as a learning system.

MS. GREENBERG: I was just looking at yesterday’s presentation at the NAHDO
and I think actually Debbie sent that out to everybody. This was in your part
of the presentation, Justine. It was on health data stewardship. But there is
this nice little box in the middle. That diagram that says learning health
system, information on health and health care, and if that were in the middle
there because it is true. It doesn’t say anything there about health,
information on health, and health care. I don’t know. It is just a suggestion
that this little box that is in your diagram here could maybe go in the middle
of there.

DR. SUAREZ: I was struggling with the relationship between the circles. I
realize there is a difference between the process circles and the
infrastructure circles if you will. That is the way I thought about it. When
you think about the process, you look at data acquisition, data uses,
evaluation and modification as sort of the continuum process of the use of
information. And underneath it is the concept of collaboration and coalition
which are needed to support that on the privacy and trust needed. In my mind it
wasn’t sort of a circular structure as much as it was more like the three
process circles on top and the two infrastructure circles on the bottom.

And the interconnectedness of all creates some confusion in my mind about
whether there is evaluation or modification that relates to the data uses and
of course yes. And then there is the evaluation of modification around the
collaboration and coalitions that are needed which of course the answer is yes
again, but it is at two different levels. One thing is to evaluate and modify
the infrastructure component, the collaboration, and the coalitions that are
needed to support a learning system. And another thing is to evaluate and
modify the users of the data or the data collection itself. In my mind it was
even though it made sense to have all those connections they were playing at
different levels and that is what in my mind got me confused. That is why I was
trying to separate the process circles from what I call infrastructure circles.

DR. WARREN: I had two questions. One, about the figure. I think if we
connect the circles to where what you see in the middle is a web. There should
only be one exit point from each circle, but it should go to the other four and
I will show you the figure because I think that tells you that everything is
interconnected and everything works with each other because I am not sure there
is a — to me when I have fat arrows and thin arrows, I think that there is a
hierarchy and I am not sure there is a hierarchy there. I think each one of
those is independent.

The second one was a comment in response to something that Mark said about
where is health and that is a comment I had about the whole learning system
initiative. If you remember when Chuck first put this before the committee, it
was a learning system for health. And then they changed it to a learning
system. For me I have always thought that we lost something there. We lost the
goal because I could have a learning system about anything. If I don’t know
what our goals are, it is hard for me to know what we are learning about. And I
think this really brings it up because every community is a learning system,
but there is nothing that tells me what it is trying to learn about. I am
really torn because I like having things coordinated so that when IOM talks
about the learning system I know what they are talking about; therefore, we
should talk about it the same way. But even for IOM they don’t have health in
there anymore.

DR. CARR: Right. It says a learning system for the US. The figure that Chuck
presented was a learning system for the United States.

DR. WARREN: But there is no health in there. It started out that way.

MS. GREENBERG: It started out a learning system for health care and then we
pushed him on that and said what about health as well as health care, and then
they dropped both I guess.

DR. CARR: What I would like to do is keep getting the input. We don’t want
to solve it here. We want to define the problem here and then we want to go off
line to solve the problem.

DR. GREEN: I will ping pong with Susan here, but I would like to cut to the
chase. The committee wants the figure in. The committee wants the figure
changed. The committee wants the title to change. The committee wants
dissemination to show up in at least one of those bubbles. The committee wants
to the arrows to be the same and in the middle of this there needs to be
something that calls out what it is all about and that it is about health.

DR. CARR: So far we have more people to hear from.

DR. GREEN: That is what we are going to do so far, but we have other figures
to talk about too.

DR. FITZMAURICE: In listening to Marjorie and then rereading the executive
summary I am looking for simplicity. I was thinking of inside a box that says
simply either improving the local health or improving community health because
we have the target up at the top, the community as a learning system. It does
something. We have the components but we don’t have what it does and what we
want it to do is improve community health.

MS. KANAAN: Thank you for this discussion. It is very interesting and
illuminating. I just wanted to say that what really the main thing that I was
trying to convey with this is I think is a key message of the entire report
which is that it is not just about data and Bruce has suggested some more
language that I am going to add. It is about a process within a community. And
Linda’s suggestion was basically about emphasizing that it is a process and it
is very difficult I think to get any graphic that is perfect and I agree we
should get it as good as possible. But I think the important thing is to show
that these major pillars of privacy and stewardship, another thing that we are
going to add, collaboration and the processes within the community, and then
the things that are related to data. That is the main message we want to convey

DR. CARR: Two more comments on this and then Larry, you will let us know
what else.

DR. MIDDLETON: Thank you for putting this together, Susan. It is extremely
interesting and provocative obviously. I think we need a graphic because a lot
of people are just visual. They won’t get much else. I worry a little though
that this is not the right level of abstraction for trying to convey what we
are thinking about. It is a lot of the relevant issues, but whether or not it
is the thing which describes kind of learning and that process I am not sure. I
think if we were to proceed with this connotation or this depiction, in a way
you need to almost make it simpler to make it more informative. Everything is
connected to everything else. How does that really work? What does it mean? The
use of bullets within the bubbles is variable. One has. The others don’t. I
have some ideas about the naming and what not. But I think more actually about
what are the key constructs of a learning system. Plan, do, check, act, or
experimentation and evidence and knowledge, et cetera. I wonder if we have to
think about a different level of abstraction to get these ideas across.

DR. CARR: Thanks. I think this has makings of a luncheon discussion.

DR. HORNBROOK: Just pardon me for a personal anecdote here. The other day I
was at a meeting and this is an example of health system learning. Kaiser
Northwest has both dental and medical HMOs and they announce for the first time
that the dentists will be able to open charts of the patients sitting in their
chairs and make entries into their medical charts as well as read all their
drugs and their allergies. For the first time we have coordinated medical and
dental care for the patients who are members of both systems. You say why
wouldn’t we have done that years ago. It is so obvious. Well, there are lots of
reasons, but it took a major change in the culture and the informatics for them
to be able to make that innovation.

DR. CARR: Back to the leadership of the subcommittee. It is 11:08. We will
go until 11:35. How would you like to use this time?

DR. GREEN: Are there other figures that people want in their report these
last comments? Stake out some territory. It is complicated enough. I think we
should just move this figure in the direction we just described. I am wondering
if the committee is just not saying there needs to be some other framing
visuals that create white space that position properly to call out some of the
stuff that Blackford was just talking about. From prior NCVHS work are there
any other figures you think belong in the report?

DR. CARR: I actually would like to see the one from the statistics for the
21st century included in the report as well just anchoring us back
to this is what we said in 2002 about the importance of community, context,
place, time, and all of that. I don’t know if having that in there drives
building on that or a new construct. I think this work really emerges and is a
continuation of that discussion and a great example of how communities have
begun to take into account not just the health, but the community, what is
available and so on. I think we should build on our prior work. Whether that
impacts this diagram I would leave to the committee. But I think that
Blackford’s comments are right that we really want a frame and construct and
these are elements of, but may not be the totality of what we are really
saying. It is a big challenge, but I know the committee can —

PARTICIPANT: Susan, what are you thinking?

MS. KANAAN: I would be happy to work further after as a sidebar with those
of you who are especially interested in getting the graphic right. There is
still – I will warn you there are going to be a number of changes to this
report because this is such a generative process and people are giving me new
language and suggestions. None of them represents a substantive change, but
certainly there will be plenty of further refinements. The graphic that Justine
wants to add I think can go very nicely on page 14. It is sort of opposite. And
of course the pagination will change, but that will fit very nicely. I agree
with Linda, the more graphics the better. Let’s work further. Blackford and
others who are interested let’s see what we can do to make this better.

DR. MAYS: I want to actually ask Bruce because he had made a recommendation
about putting in the chart from the Healthy People 2020 leading health
indicators. I think to the extent that we are hooked into other things the
report is much more useful. And what that leading health indicator, the
speculation of how it is going to be used is that each month or something like
that that HHS will actually be undertaking to focus on one of these. I am
wondering if you could say something else about it.

DR. COHEN: Sure. Earlier today I talked with Susan and gave her just some
language to add to the report that links actually on page 21 I think — links
this effort to 2020 and I think I suggested putting in the table that is in
2020 that covers the areas in 26 leading health indicators. I think it is going
to go in the appendix. I can actually read you the language. The idea is in its
recent report HP2020 identified a set of 26 leading health indicators. These
indicators cover 12 key areas which will be described in the report in order to
“address determinants of health that promote quality of life, healthy
behaviors, and healthy development across all life stages.” In addition to
locally identified community priorities the leading health indicators may
provide the opportunity to synchronize approaches to health data collection to
create collaborative learning systems not only among communities, but also at
the state and national level.

I think the point is to the extent that this is going to be used and
practical I think you are spot on. We need to link it to other themes in the
department and making this connection to 2020 will be very helpful both for the
department and for local planning efforts that I think would benefit from
linking to 2020. And if you have any suggested additions about how to do that,
I am sure in the next draft that would be helpful.

DR. MAYS: So the suggestion is to actually put the graphic in. That is part
of — I wanted to hear how to do it and I think that does. I think you sent it
around to people so if they could pull it up or I don’t know. Justine, we could
put it up there if you want us to so that people can see it.

PARTICIPANT: Which chart are you referring to?

DR. CARR: 2020.

DR. COHEN: We were thinking about table in the appendix, but if it fits
somewhere within the body of the report —

DR. MAYS: I think it would be better if it did.

MS. KANAAN: It is very big. It is several pages.

DR. CARR: We are talking about a table or a graphic?

MS. GREENBERG: Not what he sent out here.

DR. CARR: Okay. Let’s keep the conversation going. We have a plan to work on
the diagram, a plan to include the 2020 graphic. What is next?

MS. GREENBERG: How about the federal role?

DR. GREEN: I think one of the things you brought up earlier — you also were
talking about the 50th report, the 50th anniversary

DR. CARR: That is different.

DR. GREEN: That is different. Okay. Marjorie, what are you thinking?

MS. GREENBERG: I thought there was a need to make sure everyone is on board
with the federal role section. I think there are a few new ones added at the
end that hadn’t actually had review I think by everyone, but it came out of the
review process. Do you want to say anything about that, Susan?

MS. KANAAN: They are identified. It is new language that was in this draft
for the first time, one suggested by Bruce and one suggested by Linda. It is on
page 28 and 29.

DR. CARR: Do you want to read them?

DR. COHEN: The one I suggested is essentially the question I asked Jim
earlier and it is proactively develop guidelines from resources for nonprofit
hospitals to facilitate compliance with ACA community needs assessment
requirement. Again, this is an effort to link what happens in the community to
connect providers to local community health assessments and it is trying to
connect this report to ACA and ongoing department activities. All those things
go into play as part of the federal role.

DR. FRANCIS: We need to think through exactly what we are recommending there
because there are technical terms like guidance. A guidance document plays a
legal role. I just don’t know what — I think it is totally reasonable to be in
this space, but whether what the suggestion is is something that would have
some kind of legal force or whether what the suggestion is is helpful
materials. We just need to think through something like that.

DR. CARR: Let me just clarify. We talked about the federal role and then are
we moving toward a letter that calls those things out. Maybe if we think about
what we put in the letter, we would back into what is appropriate to be in the

DR. GREEN: I think that is critical. That is part of next steps is moving
toward a letter. But this is not a list of recommendations as secretary. This
is a report.

MS. GREENBERG: You don’t have to put — there are different types of
letters. One is just sort of a cover letter. One letter would be a cover letter
which is quite short. And it seems that there are already —

DR. GREEN: I think we should ask anyone on the committee if they object to
the inclusion of Linda and Bruce’s additions here and Susan can —

DR. FRANCIS: I don’t object to it, but I think it should be watered down so
it doesn’t suggest guidance.

DR. CARR: Maybe you are not saying watered down. Maybe you are saying using
language that is precise and doesn’t have implications —

DR. FRANCIS: I would actually say what we should do is say something like
this. Develop resources to facilitate the ability of nonprofit hospitals to
comply with the ACA, something like that. We can figure that out.

MS. KLOSS: The purpose of number 12 is again to reinforce that this is a
large scale system change process and some rewards and recognition along the
way are helpful to encourage change.

PARTICIPANT: Maybe it is leverage or something.

DR. FRANCIS: Can I ask us to turn the conversation a little bit to next
steps? If we want to think letter wise which is the way we think recommendation
wise, there are two ways to go about it and I would love to test the sentiment
of the committee generally about these two ways. The first way is what we did
with the original letter about the nationwide health information network. It
was a monster letter with 26 different recommendations which we then followed
up on with letters dealing with more specific topics. We did something about
sensitive information. We did something about HIPAA/FERPA. I can’t remember
what all of them were. And there actually are still some of those
recommendations that we intend to do further letters on that we haven’t.

One approach would be the monster letter which is almost a roadmap followed
by a bunch of more specific topical letters. The other approach would be to
starting on some topics, for example, the one that was just raised and do a
letter about recommendations about nonprofit hospitals and community needs
assessment and ACA. And I just wonder what people’s sense would be about
whether it is a good idea to go for the mega-letter or to go for some of the
more specifics and if so what those more specifics might be. Jim, can I ask
your perspective on that?

MR. SCANLON: I think I view this as a vision document that offers the best
thinking from the committee. I think I view this as a vision framework document
that provides the best thinking from the committee and from others who have
participated about needs, priorities and future directions for moving forward
and local data for local health. You are right. It does contain some specific
recommendations. I would definitely not go into the regulatory recommendations
here. They will be lost in the context of a framework.

You could offer this as a vision with some directional kinds of
recommendations which I think my preference is. And then it gives the
department and all the other participants a way of thinking about it and a way
of moving forward. You could indicate that the committee will be happy to
provide further information and will be looking further at some of the
recommendations, but I don’t know that the recommendations — you will
certainly convey them in terms of the vision.

Again, I think my own conceptualization is this is a vision document that
the committee does very well at this. I would indicate that there are
recommendations relating to directions and possibilities and the committee will
be working on them and refer them for the department’s consideration, but I
don’t know that I would go and certainly don’t go into potential regulatory
actions. You would really want to deal with that. Number one, we would have to
find out a lot more and number two, you don’t want to lose those in a broad
concept letter. Does that help?

DR. GREEN: Justine, the committee agrees with Jim. I heard the answer to
Leslie’s question.

DR. CARR: I think it is helpful to have Jim’s guidance on this that we make
this our visioning document and then complete that task and then next steps
would be where do we go from here. Is there something we need to go in greater
depth on, bring forward a letter, or do we want to collate all the different
things that we have heard in response to some of the questions?

DR. FRANCIS: The question was next steps. My question was meant to be next

DR. CARR: Maybe we will ask the subcommittee to decide on some recommended
next steps, but we will say this is the visioning document.

DR. SUAREZ: I think that would be my suggestion too. There are clearly not
just in the vision of federal role these 13 or 12 items that could constitute
almost set of recommendations. There is also before the visioning on page 27 a
series of bullets that actually provide even more or larger aspects of roles
and activities that the committee can undertake and make additional
recommendations. There is a privacy and security framework to guide communities
in using local data, a standardized set of community health indicators,
training, better data visualization tools. All these are aspects of a learning
system that are also needed that someone needs to take action on so we can
after the report is out begin to sketch out the agenda coming from this report
on the different activities.

One suggestion for maybe number 13 in terms of areas or roles of the federal
role is this concept of an information model. I think the federal government in
particular because the VA and others in the federal government and federal
agencies have already developed information models. It will be helpful to point
out in there that they can take the lead or facilitate the development of a
public health common reference information model.

DR. CARR: We have a recommendation to add one more federal recommendation.
That is to have a public informational structure model coordination of existing

DR. GREEN: This is in addition to adding it earlier?

DR. SUAREZ: I think it should be added both ways. We should add it earlier
to introduce the concept and then we should have it in here as a role. And,
again, the role is not to develop or the role is not to need an entity that
does it. It is more a facilitating role to the development and sort of a
leadership role to help develop that.

MS. MILAM: I guess I thought we were adding it to number 6, that discussion
of the federal role.

DR. CARR: Number 6 says expand national health information policy to build
bridges between clinical and public health data systems and identify ways in
which health care professionals and organizations can partner to improve
community health. I actually wonder whether — and Walter is suggesting it is
worthy of a separate bullet.

DR. SUAREZ: I think it is a separate — concept. Actually I was reading more
in number 4, the concept of developing a framework for collecting comparable
health status. This concept of the framework to be able to have comparable
health information across this pair of systems is a core concept. I was
thinking it should have its own bullet or item.

MS. MILAM: So it is separate from number 4 then.

DR. SUAREZ: It is separate from number 4 also, but it is complementary.

DR. CARR: Jim, you are comfortable with the language here is consistent with
the visioning document.

MR. SCANLON: And you are saying the letter will say that we offer the
following recommendation. It is fairly high level recommendations.

MS. GREENBERG: I just wanted to clarify that this type of language here
under both what is needed in an infrastructure way and this envisioning of
federal role. Having language like that is not inconsistent with this being a
visioning document. You are suggesting not going further in this document and
making specific recommendations.

MR. SCANLON: Or follow ups. But here I think this is directional. It is
vision and directional. I think we want to hear from others that react to it as
well. But I think it is what the committee always does well. It is a nice
envisioning document. It provides the best thinking. It provides ideas for
people to think about and then provides directional ways for proceeding. It is
perfectly aligned with the visioning document.

MS. GREENBERG: I would think even at this level as we have done in the past
once the report is finalized it could possibly get on the agenda of the Data
Council at some point.

MR. SCANLON: I would even get Todd or chief technology officer. This is very
consistent with the data liberation and our data access. Todd Park and others I
think and have a broader appeal as well.

DR. CARR: I have Linda then Vickie and then I am going to go back to the

MS. KLOSS: I have a next steps’ thought that maybe — I don’t know how it
fits with how the committee generally releases reports. But the National
eHealth Collaborative which is nonprofit, multi-stakeholder, is doing a series
of webinars over the next year on harnessing the power of data to help
communities improve health. And when I heard that announced I thought this
report should be featured on a web cast. I think it may be important to think
about and have the subcommittees think about a dissemination plan that is more
directed at communities and those who are working with communities in addition
to the department.

DR. CARR: Great suggestion. Vickie.

DR. MAYS: I like the way the recommendations are set up. There is one that I
just was unclear of what the word broaden means. Number two, it is almost like
if we could modify with something else. It says broaden research and
development of small area data collection. I went back and forth on the report.

DR. CARR: Do you have a suggestion for how to change it?

DR. MAYS: I didn’t because I wasn’t sure exactly what they wanted whoever
wrote that one. I was unclear because I was looking in the report where.

DR. CARR: Let’s take that to the subcommittee and work on that.

DR. MAYS: And then implementation. One of the things I was going to suggest
is that APHA has — the meeting is next September and things aren’t due until I
think January or February. But there is a specific group called a Spirit of
1848 which has a big emphasis on data and data collection. Usually there are
about 500 people that attend and probably some of us are already going to be at
APHA. This may be a great place to present it.

DR. CARR: Larry brought up. I have been reading the 50 years of the
committee and the 60 years of the committee and the reports. And one of the
things I noticed is that we are always at a spot where we are not quite ready
for prime time. And as we have seen this year when we perseverate over details,
we can miss the boat entirely. I think what we want to come away with by
tomorrow is are we good enough to go forward. I know when we did the uses of
data, it was a very dense document and we went back and also had the shortened
summary that Susan did. I think we have done that with other things. We
presented as a preliminary and gone back with some refinement. I would urge
that this is ready to go. There are many, many people that will benefit by
having this. I think if we can fix what we can fix within the timeframe, but
with a plan toward approving it and ready to move it out, I would really
recommend that.

DR. GREEN: Yes, the examples that I heard. There are many more. One of our
next steps I believe needs to be the committee itself needs to do a based on
experience inventory of similar work in other locations that is hitting the
national scene right now and will be up in 2012. March 31st the IOM will
release its CDC funded and HRSA funded report about integrating public health
and primary care. This report needs to be cited in the IOM report, in my view.
We need to get a sense of the field and then when we think about a webinar and
other types, we need to start connecting the dots helping people find each

DR. CARR: Today’s goal is separating the need to have, from the nice to
have, and developing a distribution list. I think if we can have a nice
appendix with 2020 and we can find or we can’t find, the goal is to get this
done. You have done tremendous work. I think the real value now is getting it
out. With that we will conclude the discussion of this.

DR. SUAREZ: What is the timeline for the next steps?

DR. CARR: I think that what we want to do is approve this report tomorrow
with the changes brought forward.

MS. KANAAN: I came with the expectation that I would be able to do the final
pulling together of a report that hopefully you had already approved in
essence, but be able to do that. Are people comfortable with knowing that there
are a few additions all of which have been discussed that you won’t see

DR. CARR: What will be helpful for us tomorrow is to go through what
decisions have been made, what changes have been made and we will finalize the
content. The formatting whether it is a picture or a table we will leave to
you, but we will set a timeline of a couple of weeks to get it to bring it to

DR. GREEN: What happens in a couple of weeks?

DR. CARR: No more than four.

DR. GREEN: I was with you, but I didn’t understand when you said get it —

DR. CARR: I said tomorrow the committee will vote on it. We will give Susan
the amount of time that shall not exceed 4 weeks to finish the formatting —
shall not exceed 2 weeks to finish the formatting of tables and charts, et
cetera. But once that is done the chairs can look at it as a final look, but it
needs to then be ready for distribution.

DR. GREEN: But we don’t have to have another meeting.


MS. GREENBERG: At most I would think you would — depending on how much —
you might want to finalize it with the executive subcommittee, but I would hope
we could have a vote tomorrow.

DR. CARR: We will vote tomorrow a final copy to the executive subcommittee
in two weeks with a window of days to weigh in if there are any substantive
changes, but otherwise then it goes out. What we need to do as has been pointed
out is really think about the distribution of who gets this, where it goes in
addition to the secretary. Congratulations again on tremendous work.


Agenda Item: Standards Letter for

DR. SUAREZ: We are going to talk about EFT and ERA letter before lunch and
then after lunch we will talk about the HIPAA report to Congress. It is in tab
number 4 of your document and I will just briefly give some background. We are
going to do the same as we just did with the population health subcommittee
report. We will review this today, get any feedback you might have and then
present the final version for voting tomorrow during the morning session of the
full committee.

Very quickly some background. This letter is about adopting a series of
operating rules for the electronic fund transfer and electronic remittance
advice transactions. As part of the process if you recall we had already
reviewed and approved a letter to recommend the option of the EFT standard for
transactions. I will mention a few items on that in a minute or later on, but
that was the first step was to first have the recommendations to adopt a
standard transaction for electronic fund transfer which we didn’t have. We had
a standard transaction for electronic remittance advice, the payment part which
was an 835 transaction. But we did not have a standard for EFT. That is the
first letter we had. You heard Lorraine talk about the proposed regulations or
the IFR that will be published adopting a standard for EFT. That was the first

Then the second step was to recommend a authoring entity to develop
operating rules for EFT and ERA and we also did that process earlier this year,
and then that entity was to deliver to us the operating rules for EFT and ERA
by the summer of this year basically August 1 of this year which they did. And
then during August and September and October basically the subcommittee
reviewed those, had many discussions. We presented at the September
subcommittee meeting an update for discussion for voting at that point. And we
work through after the September full committee through the finalization of the
letter and that is what we are presenting today.

We are not going to read the letter and we don’t have slides this time to
present to the committee, but it is on tab number 4. We are going to cover a
few items in detail. The first couple of pages of the letter is background that
we have in all of our letters related to the HIPAA transactions and operating
rules and gives some background about in this case the EFT and ERA. On page 2
under the heading of Evaluation of the CAQH/CORE Operating Rules it talks about
the process that we went through to evaluate the five sets of operating rules
that were submitted for approval by the committee for recommendation to the
secretary. And that goes through page 3. Those are basically background
information and description about what has happened with respect to the
development of these operating rules and the evaluation that we went through.

We, as a committee, do not get into details of the standards, the
implementation and specifications of the operating rules in this case as to
editing and making changes through those documents. Those are the purviews
certainly of the standard development organizations. And certainly we don’t
want to set a precedent for the committee to micro-manage in any way or second
guess in some other ways. The work has been done by many people that are
involved in the standard development process. The committee primarily looks at
the high-level parameters for ensuring that the development process met the
criteria in this case, the criteria of inclusiveness of completeness of
benefits to the industry, those kinds of high-level criteria that were actually
set in the Affordable Care Act. We look at those and we then make our

At the bottom of page 3 is where we start the recommendations. And the main
recommendation is basically under number one on the bottom page 3 which is the
adoption of operating rules for EFT and ERA. I want to cover that a little more
detail. We are indeed recommending to the secretary that the department adopts
the set of five operating rules that were submitted by CAQH CORE and NACHA and
that we are conditioning that recommendation on the authoring entities making
two important adjustments if you will to the operating rules. These are not
detail adjustments as to element level adjustments. These are high level
elements that I will mention in just a second. That is the main overarching
recommendation of this letter. The adoption of the five core sets of operating
rules for EFT and ERA.

And the two conditions are on page 4. The first condition is the elimination
of references to the certification requirements in the operating rules. And the
explanation for that briefly is that in the operating rules there are several
instances where there is reference to CORE certification or CORE certified
products or CORE certification processes. It gives then the impression if the
operating rules are adopted in the exact way with that language that the
certification process is a requirement because the operating rules will become
required steps that entities have to take. It was important to take out those
because there is no requirement for certification of operating rules or
standards at this point. CMS is going to be working on a set of regulations
that define how the certification process for standards and implementation of
certification operating rules will work based on the provisions of the
Affordable Care Act that require that health plans provide such certification
of compliance by the end of December of 2013.

But it only applies to help us incidentally the Affordable Care Act
provisions specifically noted that health plans were going to be required to
certify compliance with standards, operating rules and implementation
specifications for all the transactions. Having them inside the operating rules
will also create a confusion that it not only applies to health plans it also
applies to all the other entities that are conducting and performing these
transactions and meeting the operating rules which is not the case. That was
the first condition, the elimination of that.

This was already partially then in the first set of operating rules that
were adopted by CMS in the Interim Final Rule published late last year or
earlier this year on eligibility and claim status. In that Interim Final Rule
CMS actually — line item, not line item, but basically eliminated or provided
a provision in their rule that stated that basically references to CORE
certification in those operating rules were not going to be part of the actual
rule itself. That is the first condition is the elimination of reference as to
CORE certification.

The second one is the naming convention issue. CORE is currently naming the
operating rules using the term phase. There is a CORE Phase 1, CORE Phase 2 and
then there is CORE Phase 3 which will include a host of information about claim
status and acknowledgments and other things. What we are recommending is that
the secretary works with CAQH CORE to develop a naming convention that
consistently and easily identifies the transaction to which the rule applies
because these are rules that apply to specific transactions. We want to help
create a better, more clearer, and less confusing environment as to which
operating rules apply to which transactions by helping to do that by basically
creating a better naming convention or recommending the secretary work with
CAQH CORE to develop a better, more clearer naming convention. Those were the
two conditional items basically that we put in the letter.

We also highlight on page 5 in the letter two other items. One is some
observations under maintenance and change requests for operating rules. We are
following on several previous letters where we make notations and observations
about the process and the fact that we are working basically on developing
additional observations and then more formal recommendations on processing
improvement for the maintenance of standards and operating rules. That is what
the statement on page 5 is under number two.

We mentioned a hearing that we will be having Friday where we will be
addressing this item of processing improvement in the maintenance of standards
and operating rules. And we mentioned that we will be making further
recommendations after the November hearing.

And then number three at the bottom of page 5 is other considerations
regarding operating rules. We highlight the fact that this new set of operating
rules for EFT and ERA are truly new as we say in the letter. They have really
never been implemented before. We point out that the industry has not had the
benefit yet of any early adopters or users of the operating rules. This is in
fact due because of the very tight timeframe that was set up based on the dates
mandates by the Affordable Care Act to have regulations and operating rules for
EFT and ERA by June of next year and for CMS to be able to prepare those
regulations and this would be Interim Final Rule regulations. They needed to
have the operating rules basically now so that they can begin the process of
rule making.

There is really no availability of data on cost or usefulness or usability
or impact of efficiency of cost savings on all of these operating rules. That
is going to be one of the most critical rules into next year into the following
years for NCVHS to make sure that what we are recommending to be adopted and in
fact what has been adopted in regulations and the industry begin to implement
is indeed going to provide the benefits and the improvements in the process
that we are expecting to see. That is the other observation that we make under
number three.

That is basically our EFT and ERA operating rules letter. Let me stop there.

DR. CARR: Do you want to comment on the letters we received?

DR. SUAREZ: This is a topic about recommendation on the standard for EFT,
the electronic fund transfer. As I mentioned at the beginning, we had already
gone through the process of hearings and background information and discussion
and then came back with a recommendation on the adoption of a standard for the
electronic fund transfer. The way we define the electronic fund transfer in the
letter and it is consistent with the way it has been defined in the standard
development organization is the transaction or the message between the health
plan and the health plan financial institution. That message for a payment, for
a transfer of fund authorization is what we are calling and defining in this
recommendation the EFT transaction and the EFT standard basically is the
standard defines by NACHA for the submission of payment for fund transfer

If you recall we also recommended the use of something called CCD Plus which
was the unique reassociation key that the health plan will send in that EFT
transaction to the financial institution so that when the financial institution
of the health plan transfer the fund to the financial institution of the
provider and the financial institution of the provider sends a message to the
provider say I have a deposit of this amount and here is something called a
reassociation key that you will need to link that payment with the message from
the health plan sent separately to the provider to explain the actual payment
using the 835 transaction. Those two have to come together. That was the
recommendation. The EFT message would be using the NACHA standard with the CCD
Plus, the reassociation key and not any transfer of PHI, protected health
information. That was the recommendation.

We have received several letters from the financial institutions
particularly the credit card industry because they believe and understood and
perceive basically that that recommendation was restricting the EFT transfer or
the EFT transaction to only transactions being done through the banking
clearinghouse system and that that will prevent or perhaps prohibit or preclude
the execution of other forms of payment between the health plan and the
provider including payment via credit cards, for example. They raised concerns
about the recommendation that we made and the fact that that recommendation
might be restricting the ability for payors to pay claims to only a mechanism
via an EFT.

I think our argument upon receiving the letters have been and we haven’t
really had time to discuss it, but the argument has been that nothing in the
recommendation that we made before precluded other forms of payment that this
standard for EFT was explicitly and exclusively the transaction between the
health plan and the backing, but that there are other ways that the health plan
can pay. They can even put cash in an envelope and send it to the provider.

DR. CARR: Walter, you made it very simple for me last night and I need it
very simple. The letter is about the specifics of EFT and ERA. It is not
stating that that is the only way. Is that what we are saying? It was perceived
by a number of the credit card industry that by writing this letter we were
excluding credit card as a way of paying. I think it is important that we
incorporate into this letter a clarification so there is no ambiguity. There is
no intent to exclude that. It is simply an intent to describe the content that
we have.

DR. SUAREZ: I think it would be very important to include that.

DR. CARR: This letter then would need that —

DR. SUAREZ: We will work on that tonight and tomorrow morning.

DR. FRANCIS: Could I just add to that? It would be useful to not only
explain that it wasn’t intended to, but why it doesn’t if in fact it doesn’t.

DR. WARREN: I just want to ask mostly for clarification. What does it mean
why it doesn’t?

DR. FRANCIS: Well, suppose we didn’t intend to but in fact it does.

DR. CARR: This is describing this transaction. We are not talking about
other transactions.

PARTICIPANT: I don’t want to get into explaining the —

DR. FITZMAURICE: I think it is a good letter. I would make just one
suggestion, that is, break out the recommendation or maybe bold the
recommendation. I went through and I picked out four of them, but I wasn’t sure
— do a word search on recommend.

DR. WARREN: We had that on an earlier draft and somehow it got lost on the
one that came into the books.

MS. DOO: I just missed that. There was a word or clarification we have to

DR. CARR: The clarification was to put the recommendations in bold and
before that the clarification was to include the clarification that this is not
meant to exclude the credit card industry.

DR. COHEN: One minor grammatical thing. You don’t define what ERA is. You
don’t say electronic remittance advice.

DR. CARR: Other comments? Then that brings me to the important discussion
about dinner. Debbie, this is your moment.

DR. JACKSON: We have a time —

DR. CARR: Do you want to just say the name of the restaurant and the
distance and the means of transportation?

DR. JACKSON: Taste of India in Georgetown, M Street. It is about seven

DR. CARR: Those who can should convene in the lobby at 6:15. We need a count
of everybody who is attending. We will now break for lunch and we will
reconvene at 1 o’clock.

(Whereupon, a luncheon recess was taken.)

A F T E R N O O N S E S S I O N (1:00 p.m.)

Agenda Item: Standards – HIPAA Report, Review for

DR. CARR: We are not going to review our 10th report to Congress
on HIPAA, a very important topic. Judy and Walter, if you will join us. What I
would like to do — everybody got your book in advance. We have been talking
about this report for a year. To lead off the discussion about this report what
I would like to do is go around the room and I would like each person to give
me one or two bullets of what they think our message to Congress. What have we
learned in this and what are we telling Congress? I am going to start with

The point of this is it is not a test. It is not to say — but it is to say
if this is very important we are talking to Congress. We are telling them here
is HIPAA. Did you know this? It doesn’t have to be comprehensive. It doesn’t
have to be complete, but I want to hear the comments so that — a little bit
like what we have done successfully in other settings and not done sometimes to
make sure that we as a committee know what we are saying and why we are saying
and what jumped out at you in this report that is so important for Congress to

DR. HORNBROOK: My reaction is that there is a tremendous a lot of technical
details and informatics language — a lot of technical informatics vocabulary
and regulations and laws and stuff. I think we are still missing a leadership
view of what all of HIPAA is really trying to do. You can look at it very
narrowly as simply protecting privacy. But if you look at what it is going to
accomplish, it is going to be things like seamless turnover on your health
insurance switch, health plan switch. You don’t have to go get your medical
records. They will just punch of a button and they are on to your new health
plan. It will be seamless applications for life and disability insurance. You
don’t have to get a physical unless the insurance company really wants to push

You will have comprehensive pharmacy records. If you go to five pharmacies,
you will have all your drugs together integrated. You will be a lot safer for
drug overdoses, drug interactions, and for allergy. You will have comprehensive
allergies. They won’t be sitting in your head. They will be somewhere on your
chart that anybody can access with your permission. There will be a record of
your adverse drug reactions. There is a whole bunch of these visions of what
the world is doing informatics that is actually going to have a total reform
just by following it out on the quality and — care in this country. That
vision of the positive aspects of where we are going offsets the fear of the
privacy advocates that says they are going to lose all the things because
somebody is going to abuse their data.

DR. CARR: The message to Congress then is the balance of — a recognition of
the benefits of exchange of information.

DR. HORNBROOK: The health information exchanges, the health benefit
exchanges are going to be enabling total important health reform because you
will be able to tie fee for service medicine together in a much more integrated
way if the patients let it happen. If they keep blocked off and firewalled, it
will be more of the same. If they allow sharing across all their providers then
the providers have got at least the database to act in a coordinated fashion
whether or not they have the financial incentive to do it is another issue.

DR. CARR: Again, just to restate. We are sending this report to Congress an
incredible amount of work and having read it what is the one message that jumps
out of you that we hope Congress will hear? Mike.

DR. FITZMAURICE: There is more work to be done. It is clear we have done an
awful lot, but it is also clear that we are not holding back punches in this
report. We are not just saying look what a good boy we are, what a good woman
we are. There is more work to be done. It was to save money and may have saved
some money, but it hasn’t gone as far as Congress envisioned in 1996. Who is to
blame with the health plans, the vendors, and the providers? We don’t assign
blame. We say here are jobs yet to be done and that is our message to Congress.

DR. CHANDERRAJ: I kind of agree with his comments. I think HIPAA is made to
simplify the health information exchange and make health care more reasonably
affordable. But the message that the people in the community are saying that it
is a burdensome task to implement and enforce. I think a mass media campaign or
some sort of effort from the Congress to make the goals of HIPAA to be made
available to the community in general. That would be very useful.

DR. MIDDLETON: Thank you, Justine. I think the message to Congress has to be
as strong and powerful as it possibly can be. We have failed to deliver on the
original vision that was articulated and legislated in HIPAA. We have been too
permissive on the ASC X12 transaction set. We totally missed the ball on the
clinical information exchange and that health technology now is behind every
other industry in meaningful and important ways that are compromising our
ability to deliver safe and effective health care.

The fundamentals of HIPAA are essential to health care reform. Absent these
fundamentals and absent action now we will watch health care in this country
implode. When it does it will bring down the system. The patient is waiting is
my message.

DR. MAYS: I think the most important thing is that while there have been
difficulties in the past it is what the potential can be and that that
potential can really be important in terms of helping to address the health
problems that we are struggling with.

MS. KLOSS: Essential infrastructure as essential today as it was when this
was envisioned and passed and more complicated than perhaps the crafters of the
legislation understood and stays the course.

DR. FRANCIS: HIPAA’s achievements have been limited and we need to think
about not only how can we do more to achieve what HIPAA intended to within its
narrow scope, but also to recognize that HIPAA scope is actually quite narrow.

MR. SCANLON: If this were a GAO report, the title would be considerable
progress, but the vision remains unfulfilled.

MS. GREENBERG: I think and we are talking about HIPAA administrative
simplification provisions because you seem to go a little beyond that.

DR. CARR: Well, HIPAA administrative which includes privacy.

MS. GREENBERG: I think that HIPAA did really focus the national information
agenda on standardization, my obviously life’s work. I applaud it for that. I
can tell you that before HIPAA passed there were people going around saying
what are data standards. I don’t think too many people in the field at least
generally how fields say that anymore. I think it was dramatic in that respect.
But obviously it has not yet achieved its objectives.

I think that one of the issues that is mentioned in the executive summary
that is very important is that despite this committee’s many exhortations that
the department should systematically evaluate the impact of both the privacy
and the administrative simplification provisions that has not occurred.

DR. SUAREZ: It is hard to summarize 15 years in one sentence. I would say
four things. First of all, this is a journey not a destination. Secondly,
people can see this as a half full glass or half empty glass although some
people say it is only a quarter full. It has advanced standardization. We
didn’t have the best standards available to start with, but we used the good
ones that we had and that create some of the challenges that we have seen.

But two very important things I think are there is a lack of meaningful
metrics to evaluate the achievement of anything around what we have done. And
number two there is a lack of true enforcement. There are now more recently new
activities around enforcement that could help us.

And probably the last message is that the big true benefits lie ahead that
this is like a big mountain we are reaching sort of a tipping point truly with
the better standards, the better adoption, and push for standardization in
other areas like electronic health records.

DR. WARREN: Well, it is hard for me to put it because I have lived with this
report for so long. But I think the first one is we were required by Congress
to tell them the status. We have done that. We have included the technical
evidence of things that were done. And I think Congress can read that and
understand it. After all they wrote ACA which had an awful lot of data
integrity standards and standard requirements in it. I think they can read what
we have written.

We then talked about the current status and where things were working well
and where things weren’t. And then at the end we tried to be future oriented
with tying this in to health care reform. I think people forget that HIPAA was
step one and that all this other legislation that we are now grappling with has
all been built on HIPAA although I am not sure that Congress has ever gone back
and tied then together themselves through legislation which leaves us with some
interesting gaps and issues. Hopefully our future statement will help them see
some of that.

MS. MILAM: I think it is significant that HIPAA privacy is really a national
reference point. And when you think about the change that has flowed across the
states, in some areas they can be construed as massive. But when you think
about the opportunities that lie within current HIPAA that are yet to be
fulfilled and then you think about the changes that we have seen over the past
10 years both in terms of technology, consumer expectations, and what we have
learned about data itself and the explosion of publicly available datasets I
think we saw some value ads and privacy bolted on with the HITECH Act. But I
wonder if it is really timed for HIPAA 2.0 to realize the change in the world
and evaluate whether some of the different controls and processes that are in
place in the privacy rule are adequate today.

DR. GREEN: I think my two sentences would be after 10 years HIPAA has a lot
of successes that have occurred much too slowly — to the US wealth care system
spelled with a W and that it has yet to do anything approaching administrative
simplification — and in fact it is probably — made things worse — I think it
would be very hard to — HIPAA has really made my life better. I am so glad
that we developed this over the last 10 years —

DR. SCANLON: I would agree with basically that progress has been made and
work that needs to be done and sort of go back to what Jim said in terms of GAO
as the title. In a GAO report there would be the recommendation both to the
department as well as to the Congress in terms of thinking about how do you
make additional progress and I think that we have identified some of those in

The issue of optionality I think which was not a prominent part of the
discussions of HIPAA in the past is key because it is exactly the opposite of
simplification. If you have variability, it is not standardization. It is not
simplification and you have to be able to move towards something that is much
more standardized. To do that you have an obligation that that thing that is
standardized is now adequate to fulfill the functions that are required because
that is what people will claim they need optionality for is that you didn’t
satisfy the various requirements. I think that is the key.

There is an issue of monitoring of what is happening is another key in terms
of what needs to be done because you have to understand where it is you need to
intervene in terms of trying to promote the compliance, where you need to
intervene in terms of identifying revisions that are required. A part of that
is going to be when we decide to intervene, it is going to be an issue of
incentives. It is going to be an issue of enforcement. Enforcement in some
respects is the ultimate incentive. Do this or else. And that may be a key part
about this. I think the recommendation aspect of this is key to the message
that we give to the Congress as well as the department.

DR. BURKE: Two thoughts. The first I think it is fair to say the industry
has delivered much of what has been required by the rule, but very little of
what has been permitted by the rule in the collaborative information sharing
way. That is a gap.

The second thought is the majority of what Congress would think of as their
constituents would hear that the sole reference to HIPAA has been around
privacy. This is what has been facing the constituent where they encounter it
in the way of a form they are asked to sign or an excuse valid or not for
information being shared or not being shared. That is what their constituents
are hearing. They are not hearing about code sets or information privacy in a
technical way. It is a very narrow lens into HIPAA for any congressional

DR. CARR: In reading this and trying to — I am trying to be a lumper like
— adoption was impeded by the balance of the incentives and the complexity of
adoption. If we think about the health plan ID, it is easy to do — no
complexity — easy done. NPI, a little bit harder. Not so clear to the
physicians what does it mean and down the road. If we are looking at ICD-10 and
the complexity, the enormity of the work intended and to whom the incentive
accrues is a question that has been raised.

And then, again, if you look at — Medicare required that you electronically
submit and we have complete exchange and others did not. As I read through
these things where the incentives aligned and the complexity and burden was not
great, it went through. And if you look at the way and the timelines — look at
some of the things that are happening now with affordable care where we do have
measurement. We heard all about that today. We are even just barely a year or
so into it and we have the measurement lined up. We have some clarity on the
incentives. That is my take away.

I do this by way of introduction to say sometimes we get so immersed in the
details of a report that we are doing that we need to step back and say at the
end of the day one year’s worth of work will go to Congress shortly and this is
the message we wanted to deliver. Do that as a way of intro to now look at have
we stated — have we captured those thoughts in our opening comments?

DR. WARREN: What occurred to me as I was listening to everybody go around
the table is a lot of our comments are based on some of the analysis that we
have all individually done, some of our experiences, and some of what we have
learned about HIPAA as it has gone forward that we would like to explore.

What I would recommend is take a good look at this report and my bias is it
is good enough to send on. Let’s get it off because it has taken us 18 months
to write an annual report and I think that is probably too long which makes me
worry about the 2012 report which is coming along behind it.

But I think there is significant discussion here and I would recommend that
the full committee hold a series or one hearing about HIPAA and where it needs
to go next because I think there are a lot of things that people have talked
about here that weren’t in the letters of evidence and things that we used.

One of the requirements that we have in our documents and letters is they
come off of testimony we have heard, et cetera. Let’s have a new set of
hearings and start calling for some of the testimony that would answer some of
the questions that have come up in this exercise. I think that would be an
excellent thing for the committee to do.

DR. SUAREZ: I think that is a really great idea. I think sometimes one loses
sight of the fact that we are moving the largest industry in the country
towards some common goal and it takes time. And we didn’t have the best and the
most perfect elements at the point. I can give you a number of examples of
concerns and issues with the version that was adopted, but that was the only
version we had. There were a lot of other things that weren’t in place. For
example, just give you one simple one. The NPI wasn’t adopted so the 4010
version had to have mechanisms to allow non-NPI and then some language. And by
the time that NPI gets it up then the numbers should be there. A lot of the
options, a lot of the challenges with the actual standards were part of the

At the end of the day if you point out — if someone were to ask me has
HIPAA been good, my answer would have been yes. It has helped move the entire
health care industry towards a common set of standards. Has it been done right?
My answer is we could, but at least moved it from the multiplicity to a few
smaller number of standards and now we are ready to move it into a better one.
This is a change that is in the scope of things and the 200 and some years of
history of this country moving the larger industry in 10 or 20 years into a
common set of standards I think is good.

I think again what I think is missing and has been missing is a good set of
metrics that can allow us to demonstration the true value and the significance.

DR. CARR: Metrics if one thing. I think incentives are one thing. I think
the point of giving this report to Congress is both to say what is the work
that remains for HIPAA and what is it that we do well and ought to continue to
do well and what are the mistakes that we made that we don’t want to do. I
think I have heard metrics, incentives and timelines and enforcement. I think
timelines as well. Look at how aggressively we have had to work on your things,
but we have done it even though it seemed incredible.

DR. SCANLON: I think there is a dimension that we need to bring into this
which hasn’t been typical in terms of discussions of HIPAA and that is the
demand side of this marketplace. It is the idea that the industry has this
problem in terms of complying and sort of becoming more efficient and that the
customer is just going to have to live with that. We would not live with that
in virtually any other sector. Can you imagine going to a store today and
having them call up some number to approve your Visa purchase? Industries are
constantly in transformation. Moore’s Law in health care would be 18 years not
18 months. That is the kind of problem that we are dealing with here. And the
only way to change it is by being aggressive from the demand side. And the
demand side involves the public, the public sector, and the payors. We need to
think about all of them and saying that we need to push forward.

I think that if we don’t do that, we could be here 10 years from now talking
about progress made, more needs to be done. We really need to think about how
we can avoid that.

Since we are into this GAO theme a little bit here today, let me just make a
comment that I think is consistent with what Justine has been saying as well as
is consistent with the idea that we are virtually ready to release this report.
There is part of a GAO report which is kind of one page at the beginning which
really tries to get the punch lines across. I think what we need to consider is
what is our one pager or one and a half or two pagers here that will get all of
these punch lines across. It is not dealing with the whole report. It is
dealing with — what do you want to put in bold? We had an earlier discussion
that said let’s put the recommendations in bold. What should be in bold here? I
think if we can focus on that a bit that might be helpful in terms of achieving
your objective.

DR. HORNBROOK: I think one of the things that we should put in bold is that
the data are safer. Before we had HIPAA there was the same amount or even more
releases going on. We just didn’t know it because nobody required reporting.
HIPAA requires reporting. It feels like it is worse, but it is probably a lot

DR. CARR: I am not a GAO person so much, but would we want to put here is
what is good and here is what remains. Is that part of it or was it just here
is what needs to be done?

DR. SCANLON: In fact, I think there is a bit of that of when we start the
executive summary. The first couple of pages of the executive summary are
almost like an overview of where we are going to go from here. They are much
more high level and we can make sure that we include those kinds of things.

The one thing I think which is missing from the first couple of pages of the
executive summary is actually the discussion of the issue of privacy in the
compliance with privacy. There are some privacy bullets here, but they are not
about this issue of what has been the compliance record. I think we have to be
able to say something about that.

I actually would say that there is an issue of uncertainty in my mind.
Uncertainty should be built into our message. Yes, there is a whole lot of
action in terms of reports and resolution in reports, but we really have no
idea what the universe is. This goes to the detail oversight that one might
think about doing which is we say we are actively monitoring to make sure that
inappropriate things are not happening and that we also have the mechanisms to
make sure that they are detected when they do happen. That is missing in the
current world and that is something besides the simplification that we would
want to think about the future world. Safer data today but even more safe
tomorrow would be the message.

DR. MAYS: Bill actually began where I wanted to comment and that is I think
as Marjorie points out this has just been an issue of focusing on the data
standards. I think we have to start talking about the who and moving also in
terms of talking about the level and kind of moving it down. Much of what the
work has done in the beginning is really to focus on the industry. If you were
to talk to Congress part of what they get a lot of complaints about HIPAA and I
think in the process of the complaint there is not a sense of where the patient
is. There is not a sense of where the community is in terms of the public issue
around this data. I think if we focus just a little bit more in terms of for
the future around some of the privacy issues and say what we have done good but
also to say going forth for a patient what it is at a public level that the
patient has benefit for and what needs to be done because again if we cycle
back to our earlier discussion it is like we get better data. We get better
cooperation when people feel as if they give data that it is very protective,
but people don’t feel that.

DR. COHEN: Not only the patient but also one of the unexpected consequences
of HIPAA has to do with public health data, the proposed rule making around
privacy and the IRB. People clearly think HIPAA has created a potential
standard for confidentiality and privacy. I think it is important as we look
forward to HIPAA thinking about other places it might be used, is it
appropriate to use, and public health research for — IRB confidentiality.
HIPAA has inadvertently — covered entities as well as uncovered entities a
whole consideration of privacy around — I think this needs to be woven into
the theme about where we go from here. Is it good? Is it bad? Does it need to
be changed?

DR. CARR: I would add to our list of GAO bullets: metrics, incentives,
timelines, enforcement, and unintended consequences because I think we have
seen a lot of them.

MS. GREENBERG: I am not exactly sure how to phrase this, but some people
have referred to this in general. Walter mentioned it is like moving a
battleship, the health care enterprise. And others have talked about how slow
it is and at this rate will we ever actually get to our goals.

One area that HIPAA has impacted dramatically from my perspective is this
ability to move to the next version of international standards such as the
international classification of diseases. Until HIPAA probably around the time
of HIPAA had there not been HIPAA we would have begun the process to move to
the 10 CM code sets in the way that it had been done to 9 and 8 and 7. It was
not a regulatory process or anything like that. Maybe that wasn’t a good thing.

But we have been paralyzed by the requirement to go through rule making and
for the code sets by the fact that they are tied to the transactions and we
didn’t have a transaction and this relates to what you were saying Walter. At
the time that we had to implement a transaction standard, the standard that was
available, it wouldn’t even accommodate the new code sets. We had no choice but
to stick with the old code sets.

There are still as recently as yesterday people trying to stop this adoption
of the ICD-10 which was implemented in ’99 for mortality and which it is being
used all over the world. It really says it is a microcosm to me. I am not
denying that it is a big expense to make this change. But it is a microcosm of
how difficult it is to make changes. We have to think about do we have a way to
keep our classifications which are a foundation of mortality and morbidity data
current without people killing themselves.

We have an article about a month ago. It was called the Ten-Year Reign of
Terror. I thought they were talking about Al-Qaeda. They were talking the
ICD-10 code sets. It would be funny if it weren’t — I need guidance from this
committee actually and I don’t think I am going to get it today. We are talking
about having more conversations in the next few meetings about all the places
that these code sets touch and how we can make — but we have to find a more
seamless way to make these changes. I think this is true about other aspects of
the HIPAA standards as well. But it is really dramatic with this. We have just
been paralyzed and we are way behind in a lot of ways with our epidemiology, et
cetera by this paralysis.

DR. CARR: Again, when you talk about themes, timeline and synchronization is
the thing because the 5010 held up the ICD-10. It is achieving that timeline so
that the next thing on the timeline can be achieved.

MS. GREENBERG: And that somehow being able to get the tools that can at
least next time make this less painful.

DR. WARREN: Just to comment on that especially for the new members. We held
extensive hearings on the updating of the transaction standards and ICD-10 and
I believe those were mid-2005 or 2006 or somewhere through there.

MS. GREENBERG: Are you talking about after the committee made its

DR. WARREN: We held extensive hearings. We had all the key players in. They
advised us as to the timeline we should recommend to the secretary for
adoption. Everybody bought in. They also said do not let the dates slip because
that has been a problem with all the other HIPAA requirements is the dates
would always slip and everybody would know that. We made that very clear to the
secretary. Pick a data and stick which they have done very well on. However, we
are now hearing organizations that gave testimony at that 2003 meeting that are
now saying kill it. This is horrible.

I would think between 2003 and 2013 that there would be plenty of time to
get ready to implement ICD-10.

DR. CARR: The only thing I would add to that and again it is synchronizing
not just our activities, but the landscape. I think what we are hearing today
is they have meaningful use. They have EHR adoption. I have accountable care.
Again, it is a matter of synchronizing. We are not judging here, but we are
saying what are the factors that need to be taken into understanding how you
make enormous change.

DR. WARREN: And that is why I was recommending we have a set of hearings to
address all these things. Obviously we thought we were doing the right thing
with ICD-10 and we did what was advised. Obviously that is not working now.
What else did we miss? What other opportunity in implementing HIPAA to its
fullest because we are still not done implementing HIPAA.

DR. CARR: Were you on for the beginning of the call?

DR. TANG: No, I had to do a presentation to the board, so I apologize for
not being there.

DR. CARR: Let me catch you up for a minute. We are talking about the tenth
report to Congress. We went around the room to say what is the one thing that
we have learned or what is the one thing we want to tell Congress about the
state of HIPAA 15 years into it. We had a list of themes that came out.
Articulate the vision, have metrics, align incentives, have enforcement,
synchronize, enforce the timeline and synchronize activities, and unintended
consequences. That is where we are and we have a list of folks who want to
speak. Next is Linda then Sallie then Walter then — Paul, do you want to speak
to that? We will probably just go around the room and let everybody speak. Did
you want to say something now following on that?

DR. TANG: I can piggy back. I am your side kick lumper and I am glad to see
you — in the theme of I heard some of the round robin. I agree with a lot of
the — HIPAA, I believe, and Walter said it last. It really did raise the
awareness for a need for standardization and for privacy — I think the net
benefit is positive. But it is — that is really killing us as Jim was saying.
What we did was necessary, but not good enough. And the kicker is for health
reform. I am using that comment to transition from we had HIPAA. We had HIPAA
for 15 years. We got this point and can we make recommendations for going
forward using some of HIPAA, using some other means, using some of — what
would empower us that we couldn’t —

Using some of the terminology of that optionality is in a sense more
standard or less optionality to better the common good and that is exchange
information effectively — and that actually — for example, the non-covered
entities —

DR. CARR: Paul, I am going to interrupt you for a second. We are still
having a lot of difficulty. We are in a huge ballroom and we have speakers on
the side and it is just not coming through. On the other hand, I am on line. I
am wondering if as you listen we go around the room, could you send me a
paragraph of your key bullets and let me read that so the full committee can
hear it because right now we are impaired. Is it possible for you to do that?

DR. TANG: Yes.

DR. CARR: I think what I am going to do is go around the room again because
I think everybody’s hand went up. We will start on this side.

DR. GREEN: I like your list. I also like the report. I just want to go back
in terms of process. I think what we are talking about here assumes that we
like the report and the report is well done and we are talking about a
reflection on the report.

DR. CARR: We are somewhat, but I want to make sure that the executive
summary says these main points. I want to hear everybody’s discussion and if
there is a need to put a headline or to punch out these themes that will be a
take away that would be tonight so that it could be voted on tomorrow.

DR. GREEN: I like your list. I would nominate something to add and it would
go like this. The pace of HIPAA is so much slower than the pace of disturbance
and disruption in the health care system that if we just continue the way we
are going it will be irrelevant. It has to be different. The word I want you to
put on your list is pace. There is a huge problem of pace that this report
reveals and just jumps out. The ICD-10 thing. It is for me one of the most
painful examples. Ten years from now, keep doing HIPAA the way we have been
doing HIPAA is not good.

MS. MILAM: I have been thinking about Mark’s and Vickie’s comments together
thinking about the patient perspective. And the whole purpose of HIPAA
initially was for administrative simplification to make the system more
efficient. Are we asking now that there be I guess another mission more patient
focused? I think the tools are in HIPAA to do that should the department want

There has not been much of an effort to educate consumers and patients
around what their rights are. They would have no way of knowing if their data
is more secure unless they got a letter telling them that there had been a
breach. But at the same time they have a lot of rights that they don’t even
know exist, for example, the accounting of disclosures. That has not been well
publicized. And should patients exercise that right they could see potentially
a whole host of opportunities for follow up. Going down that route would be
slightly different than what the department has done in the past, but maybe it
is time.

DR. WARREN: I am still concerned that we are drafting the letter and we are
adding points that I am not sure the bulk of the letter has addressed and we
are putting that in the executive summary. And the reason I say that is I am
fairly visual. I would need to see a draft of these points before I could say
let’s change the ones in the executive summary. However, as I hear everybody’s
comments I think what we are talking about is we need a lot more reflection in
this area so let’s schedule some time for that. I think this report is ready to
go. If it is not then let’s scrap the report and start working on the 2012
report so that we can get it done on time.

DR. SUAREZ: I was going to offer some similar comments. I think this is not
any more a letter I suppose as a report. It used to be the way we were doing a
letter the report that we call a report to Congress used to be those new
members a letter really. But this is for the first time a true report which I
presume we will need to have a cover letter and in that cover letter is perhaps
where we can put some of the good, the bad, and the ugly kind of thing. All
these notes that I have been taking are — a lot of them are related to the

In that one and a half page cover letter is where we need to lay out the
three or four things that HIPAA has done that have been good in my mind and
that have been laying the groundwork on health IT so moving us from paper to
electronic. That is a major move that we haven’t even mentioned moving then to
industry to our standardization which is in the electronic world moving there
from multiple to one, and then establishing a privacy and security framework.
It was the first time in the country that we had that and maybe a couple more
that we haven’t yet gotten to.

But I think we have to lay out some of the basic groundwork, the good things
that have been done by HIPAA and then you have the needs. I don’t know if they
are the good, the bad, and the ugly, but the needs which includes this point
that you mentioned or that we listed now, the metrics, the need for incentives,
for enforcement, for synchronized timeline to look for unintended consequences,
the pace. I think that is the way I would lay it out. In my mind I just totally
agree. The report is in my mind ready. We just need to draft a cover letter.

DR. FRANCIS: I think Walter just drafted a paragraph that goes in between
the title and executive summary. And the reason I think it goes there rather
than as a letter of transmission is that letters of transmission don’t get read
or get lost. I hope that has been recorded and we just write it down and it is
right there.

MR. SCANLON: I think some of my comments were similar to Walter’s. I was
there as many of you were at the birth of this and it wasn’t just HHS deciding
to hoist this upon industry. It was really the industry coming to Congress and
telling them how easy it was going to be and all the savings that could result.

A couple of things. I think we could probably write in the executive
summary. We need to differentiate what it is because some folks associate HIPAA
with privacy and they are not even aware of the other revision. It is privacy
and security. It is administrative simplification. What is HIPAA —
differentiated from the health insurance part of HIPAA and then you could look
forward to the electronic —

DR. CARR: It is the second paragraph, but you raised a good point. Just
having a heading on that might be helpful as well.

MR. SCANLON: Talking about HIPAA alone I think it really — because some
folks will think you are talking about privacy only and it is kind of a losing
battle. Secondly, I would — like Walter I would put some of the benefits and
accomplishments right at the beginning as well. This is just genuinely
difficult and you are dealing with a very difficult centralized kind of an
industry here. Some of the benefits are the standardization. Some of the
benefits are actual cost savings which I think almost could be demonstrated. I
don’t think they have ever been developed nationally, but certainly for the
administrative simplification part.

And then on the privacy part it is a tremendous benefit. Where would we be
now in terms of EHRs and HITECH if we didn’t have this foundation? You could
argue that it is imperfect, but without it we would be 20 years behind. We
would still be arguing about how can you have EHRs if you don’t even have

And then finally I would add to the forward some concept of streamlining. I
think Marjorie was trying to raise this as well. If you have to go through the
full blown rule making process, you are simply not going to keep up with the
changes. And on the other hand you do want public protection. That is why you
have regulations so that you don’t make changes that are harmful, but perhaps
some concept of looking forward at some way of streamlining so that the
benefits could keep pace with changes in the health industry.

MS. KLOSS: Well said and I think we are honing in on a way to move this
forward. It really is a remarkable summary.

Back to the ICD-10 I have always felt that that was a really compelling
example of where sequencing change is so important. If we think about ICD-10
had we had that in place when it was originally envisioned sort at the end of
the ‘90s how that would have enabled the electronic health records, the
quality reporting, and all of the things that are very costly and hard to do
today because the sequence was out of sequence.

I think one of the points we may want to raise is the importance for there
being — the pace and sequence of change is so important. People like the
recent pushback on ICD-10 come about because the whole vision isn’t clear to
people so they think let’s just throw this piece out as if today they are
separable. But I think they are seen as separable because everybody views it
from whatever silo they are living in and working from instead of seeing that
hole. We need to do more to help people see the hole so that they understand
the sequence and pace of change.

DR. MIDDLETON: I guess I am disappointed in my chair person for not
capturing the passion and reiterating that to Paul. I would ask that that be
captured and somehow in this report which is great and HIPAA did do a lot that
we just actually speak truth to leadership. We are not there. We have farther
to go. If we don’t go there, we are going to miss an opportunity. They are
listening. Let’s use the opportunity to say what needs to be said.

DR. CHANDERRAJ: My point again I want to reemphasize the over burden of the
provider community and trying to put this all into their practice and it is
very overwhelming, ACOs, so many things coming up. The only reason EHRs are
easily adaptable and able to rapidly pace the system, is because of
incentivization. Unless there is incentivization there is no room for the
physicians to grapple with all these regulations. They are dealing with so many
things in everyday practice, ACOs and other things coming on and RACs coming
on, auditing them and everything. They are afraid and they are afraid to do
anything unless you institute an educational and incentivization program I
think this pace will be further down. I think ICD-10s in 2005 was a different
ballgame. Now they have to deal with so many other things in trying to
implement one more thing with ICD-10. The 5010 standards are coming in January
and they are scared. Most of the bills may not get paid. They are very scared.
You have to do a massive educational program and incentivization.

DR. CARR: Paul, I have not gotten anything written from you. Paul, are you
still there? Are you sending me something?

DR. HORNBROOK: I just wanted to reinforce Blackford’s points. We have come a
long way. We have a long way to go. And I just want to remind us all that when
this journey started we were heading for an economic — we are already in an
economic downturn which had tremendous negative effects on the health care
system. A lot of people lost their insurance. A lot of companies have walked
away from full family coverage and gone just to employee coverage. They have
reduced their benefits, the premium subsidies so the employees are paying more
so that kind of background is at the same time we are trying reform the whole
health care system. We have the Affordable Care Act. In some sense the economic
environment, the threat of Europe collapsing, the overall cost of entitlements
and debt in this country means that you have to really reform health care
because we are only going to spend more and more. You take the straight line
and trend it out with us baby boomers. This is going to bankrupt the country.

The things that we are talking about in terms of reforming the health care
system, the information and the patterns of care and putting a scientific basis
on a cottage industry. For the first time you can see into every physician’s
practice and start to monitor how we deliver health care which of course is why
physicians are so much in fear of this because it means a whole different kind
of career for them than they have ever had before.

Even though we say this has been somewhat negative there has been a lot of
adaptation. When we started HIPAA, we were as researchers really worried that
we wouldn’t be able to do anything. Well, we learned that yes I can send PHI
out to an outside vendor if I set up the right contract, but it took us several
years to figure out the contractual mechanism for doing that. It also took some
technical revisions to HIPAA. And of course there are probably technical
revisions that ACA requires, but nobody is willing to open it because of the
tremendous device in this in Congress.

This device of Congress is also really part of the context in which we are
operating right now. We probably can’t say that inside our report, but it means
that it continually heightens the need to drill into health care and figure out
what you are going to do and what you are not going to do because we have to
make real changes in what medicine people get, what surgery they get, what lab
tests they get and at the same time try to keep technical progress going.

DR. CARR: Let me summarize for a moment where we are. I think that this has
been a fantastic discussion and setting the stage for our 11th
report and the work ahead. I did hear some suggestions of getting a framing
paragraph. I think Leslie said right after the introductory paragraph. We also
need to say what is HIPAA. And the themes again that we have heard articulate
the vision and we have a bit of that and what is HIPAA, but perhaps we might
expand that a little bit. And these points actually are in here. The point
about metrics and being able to follow that. I think timelines we can call out
of that because that in fact is implied, enforcement, incentive and alignments
and unintended consequences which is a lot of what is being outlined here.

My next question is do I have a couple of volunteers to help craft that so
that tomorrow we can present a clean copy for a vote to the committee.

PARTICIPANT: When is the Standards meeting? In the morning?

DR. CARR: Tomorrow morning at 8 and by the way it goes 8 to 9:30 because the
full committee begins at 9:30 tomorrow. There is a discrepancy in the book. It
doesn’t go until 10. There will be some time there and perhaps we can draft
some things this afternoon. What was sent out for the standards? I think
something was sent out. The standards starts at 8.

Let me just read then. Thanks, Paul, for sending this. Paul has four points.
He agrees framing preamble for the report which I think is good. Number one,
HIPAA did a tremendous job raising the nation’s awareness of the importance of
A, electronic health records and electronic transmission, B, importance of
standards, C, need for privacy and security.

Number two, it accomplished a lot, but not enough to support health reform.

Three, lack of full implementation of HIPAA now threatens the nation’s
progress toward better health and its ability to reform our fragmented health
care delivery system.

Four, to realize the vision and adequately address the pressing health care
needs of an aging America. We need to be more vigorous. We need to move
vigorously to complete the standardization needed to effectively and
efficiently deliver care. Standardization needs to be accomplished in two major
areas. A, standards for health information exchange, semantic interoperability,
and B, standards for privacy and security for all people and entities that
touch PHI, i.e. comprehensive, privacy legislation. These standards are
necessary to deliver effective and efficient care in the 21st

Well said. Thank you. Paul, thank you. Clearly you are a member of this
committee as well. I will forward this to the others and we will use this as a
base. This is terrific.

Any other comments? If there was any wordsmithing or anything that you found
as you read through it, be sure to forward that ahead or give it to somebody.
Once again, I really want to applaud the work, this incredible amount of work
led by Walter and Judy and Leslie. Thank you very much for all that you did.


DR. SUAREZ: I do want to thank you and I do want to also thank our lead
writer Margaret, who has helped the committee on a number of other — that she
was instrumental in helping us put together a lot of this material, and
certainly Lorraine of course. Lorraine and Judy and I, are a one-person team.

One thing I wanted to mention and it is really important is really the
strategy to disseminate and communicate this. I think it is going to be very
important to not just deliver this and be done I think it is going to be
important to create some key messages especially in light of the fact that I
expect that we are going to continue to hear more about questions and
challenges and issues around adoption of some of these new standards starting
next year with 5010, but certainly starting yesterday with ICD-10. I think it
is going to be important to develop some strategy for communications beyond
just finishing the report and sending it out to Congress. I think we want to
talk about that as well.

DR. HORNBROOK: Walter, it is on page 24 where you have in here a different
survey from AHIMA completed in August 2011 shows a much higher percentage of
respondents indicating they have started work on ICD-10 planning, et cetera.
The HIMSS survey, however, also reported that some 39 percent of respondents
plan to use cross walks for native ICD-9-CM/PCS coding despite caution from the
NCHS that cross walks can never be 100 percent accurate. Is that which I was
asking Jim earlier, is that allowed? If you are still using ICD-9 to do the
native coding, you really haven’t converted to the new coding system.

DR. SUAREZ: Well, you can use a cross walk. Are you asking whether —

DR. HORNBROOK: They can legally use a cross walk and essentially report
ICD-9 codes hidden as ICD-10 codes masqueraded as ICD-10 codes.

DR. SUAREZ: No, they need to use a cross walk to convert their ICD-9 to
ICD-10 and put the ICD-10 in the transaction.

DR. HORNBROOK: But you haven’t got the code logic that allows you to
actually represent the ICD-10 dimensionality. You are still using ICD-9
dimensionality. Are they committing fraud and abuse?

DR. FITZMAURICE: Not overtly, but — show that they put a wrong code on if
they were audited or may show the right code. That may be an initial stop get
way of converting a system from ICD-9 but get a report ICD-10 on my bills so
that is how I am going to get the ICD-10 codes. I hope they are right.

DR. SUAREZ: The question is whether people — 39 percent of respondents
trying to use cross walks, s that legal, is what you are asking. And the answer
is yes. People don’t have to natively internally change their practice
management systems use ICD-10. They can use ICD-8. They can use any other code
set. There is no requirement to have internal modification of the internal
systems to be use ICD-10. They can use ICD-9 internally, but when they are
generating out a transaction that needs to be sent then they have to convert
that ICD-9 into an ICD-10 that can be gone. That is what the cross walk is

DR. WARREN: — they can take whatever is natively in their system and map it
to ICD-10 so that when they have to submit something it is that map ICD-10 code
that is submitted. They may do that themselves. They may hire a vendor. They
can hire a consultant to do that for them on however they want to process as
long as what comes out is the ICD-10. Mapping may be a better phrase than cross

DR. HORNBROOK: The problem is does this committee want to delve into the
issue of the biases in disease reporting that that practice causes because of
the distinctions broken out in greater detail or new disease added to the
ICD-10 that aren’t in ICD-9.

MS. GREENBERG: That is why they said despite the cautions or whatever.
Obviously the best practice is to take the medical record or the way you code
now, and take the coding system and code it in the ICD-10 code sets. And in
fact you can’t, everything isn’t one to one. You can’t just use that cross

DR. WARREN: Is it legal to use the cross walk? There is nothing we can do to
prevent that? There is no legislation against that? Is there a legal
requirement. However, if they set the wrong code for reimbursement, they are
putting themselves — which they have been all along if they submit the wrong
codes —

DR. SUAREZ: To top that of course EHRs with meaningful use stage 1 the
certification criteria is to support both ICD-9 and SNOMED. ICD-10 will come in
phase 2 and stage 2, when ICD — but today an EHR must be capable of supporting

MS. KLOSS: As a practical manner, as payment systems begin to be adapted and
based on 10 data, it will be in their best interest to be — I think if there
is some of this it will be transitional because it won’t be in their best
interest in the long run.

DR. CARR: I have a question from Paul. Is there a national plan or strategy
to map SNOMED to ICD-10?

PARTICIPANT: Yes. NLM is doing that.

MS. GREENBERG: Although we heard some time ago, that there were inadequate
resources. Like everything else it is moving along, but slowly.

PARTICIPANT: (off mic)

MS. GREENBERG: They can use that to then develop the cross walk to 10 CM.
And there is already some work actually going on concurrently. We might want to
know what the status of that is but certainly everyone recognizes that as a

DR. CHANDERRAJ: I think mapping for me I think it is a very bad solution to
the whole problem. For example, for ICD-9 code for coronary stenting there is
only one single code in ICD-9, V4500. But when you translate that into ICD-10
codes there are 26 different codes for different stents. You cannot map this.
Physicians are just using coronary stenting. That is all. Mapping is a very bad
way — Mark was raising concerns about fraud.

DR. SUAREZ: The message I think generally has been in the industry. You want
to natively start using ICD-10 inside your systems. You will still have to do
some mapping because all your data backwards is ICD-9. You are still going to
have to have some resources internally if you want to look longitudinally at
data that is going to need to have some mapping back to ICD-9. But moving
forward the idea is the expectation particularly when you look into 2013 and
beyond that the EHR system and the practice management system will have
natively ICD-10 and will support natively ICD-10.

Agenda Item: CDC Liaison Briefing – Meaningful Use of
Population Health Data

DR. CARR: Thank you. Seth Foldy, are you on the line?

DR. FOLDY: I am.

DR. CARR: Great. We are looking forward to hearing your presentation. We are
struggling a bit with our sound system. Do we have slides? Okay. I think what
is helpful is if you can speak slowly and clearly and we will follow along.
Your slides are up on the screen now.

DR. FOLDY: One thing I have to say is although I sent slides in I don’t see
them on the agenda. I am not sure how people outside the room will be able to
see them.

DR. CARR: Go ahead then. Thank you.

DR. FOLDY: I was asked at the last full meeting to give a briefing on how
meaningful use objectives, meaningful use incentive program interacts
population health. There are many ways I can approach this and I know that
there is a lot of people on the committee itself that have a lot of detailed
knowledge about meaningful use incentive program and others that may not know.
I thought I would go ahead and take the time to run through a fairly technical
discussion of what is being incentivized, by whom, by when so that we were
starting from the same place and it may lead to interesting discussions that
our half hour won’t accommodate.

Going to the second slide, I will be talking quickly about what is the
modern definition if you will or the concept of the electronic health record
and why it is different from the old electronic medical record, the who, what,
when and how of meaningful use. What is changing for public health and
population health in the world of meaningful use? This is obviously a personal
view. What are some of the challenges and victories after the first year of the
program and what are some of the items that are popping up as opportunities,
perhaps challenges on the long range horizon?

And the third slide. The electronic health record is more than an electronic
medical record or electronic folder where you just tuck a lot of information.
It is a systematic collection of electronic health information about individual
patient organized to assist the care of the patients but also groups of
patients like a practice’s entire population and that is because the
information has been digitally formatted allowing information to be used in
many different ways and also to be shared over secure networks.

For example, care as it is entered such as writing a prescription using
ePrescribing that also tracks the kind of care provided. It is an input — I
wrote such a prescription. And of course outcomes are also recorded such as the
measurement of blood pressure for somebody who has been written a prescription
and this can be tracked for both individuals and groups. In other words,
medical practices are far more capable of performing what we call in public
health surveillance than they ever were before electronic health records.

These digital elements are reusable. If you use blood pressure in one
location on the record if it is standardized, it can be used for many other
purposes such as grading longitudinal trends. These digital elements can also
become part of surveillance reports to public health agencies which will be a
good part of the focus of my talk today.

Electronic health records are capable of triggering warnings and reminders
primarily to providers, but in the future increasingly to patients via tethered
personal health records. And these warnings and reminders are partly about
acute care but they can also be about the need for or lack of preventive health

These electronic records send and receive orders, results, care summaries
and even are now being formatted to send public health surveillance reports to
public health agencies. These electronic health records ensure quality and
safety and also are being designed to share information with patients.

In terms of the world of traditional public health, some of the less
traditional population health, these EHRs allow providers to start monitoring
performing surveillance on their own practice populations. What percent of my
population has been immunized against flu or has had a mammogram or has their
blood pressure adequately controlled?

They are also capable of beginning to automate many routine surveillance and
reporting tasks, not just public health reporting, but the creation and
reporting of clinical quality measures, the creation of registries of patients
within the practice that may share a chronic disease like hypertension or
diabetes registry, and even in the future they are conceived as being able to
respond to data queries.

Now various other software systems such as laboratory information management
systems and admission discharge transfer systems are also being certified as
being part of the electronic health record inside health care organizations.

Over time what we foresee is that most public health reporting will actually
be taking place through the electronic health record as opposed to paper or
facts or other reports. And of course for this to happen they will begin using
national electronic health record standards in reporting information to public
health and population health.

And of course in red rules that are established for electronic health
records increasingly start to define what types of information, the format of
information, even which bits of information might be available — other
population health purposes in the future.

Meaning use is slide five. Who sets these rules? Office of National
Coordinator sets many of the interoperability rules for electronic health
records. This is a voluntary program. It is the Medicare and Medicaid payment
systems incentivizing professionals and hospitals to obtain electronic health
records and then use them. Only certain types of professional hospitals are
eligible. I won’t go into that.

And to qualify for incentive payments today and to avoid any possible
reductions in payments in a few years eligible professionals and hospitals have
to implement a certified electronic health record that is one that has been
shown to be able to do certain tasks and meaningfully use it to achieve several
objectives. And some of the more important population health objectives include
sending electronic laboratory reports to public health agencies, sending
syndromic surveillance reports to public health agencies, submitting records of
immunizations to immunization registries that are built typically on a
community or state basis, but also to submit quality measures to Medicare and
Medicaid. And all of these are now in effect with the end of the first year of
the program just having passed. Many hospitals and professionals are trying to
document their ability to meet these objectives.

Now population health is the only thing address in the program,
ePrescribing, Computerized Physician Order Entry, exchange of care summaries
between clinicians, informing patients about their care, and providing clinical
decision support to the clinicians are also other objectives in trying to end
this incentive program.

Moving to slide seven, more about when. I think most of you know there are
three stages to the program. The first stage is likely actually to be extended
for an additional year until December 2013. That is a little confusing about
the when because hospitals use a federal fiscal year and professionals use a
calendar year. But this means that stage 2 of meaningful use will likely not
definite yet pushed until October 2013 before it begins. Stage 3 beginning the
year after that.

The incentives are front loaded so that hospitals and professionals that
begin participating in this program early get more money and incentives in the
end than those that begin late. And penalties go into effect starting, if I
remember correctly, 2015.

What is changing with this new scene of electronic health records and
incentive program? Some of public health perspectives suddenly thousands even
tens or hundreds of thousands of eligible professional and hospitals are
seeking to report to public health whereas before public health might have been
chasing them. The numbers are rising rapidly. Public health has spent a decade
on boarding dozens of large laboratories, for example, for electronic
laboratory reporting potentially now to scale up to thousands of hospital
laboratories reporting. Obviously electronic health records use the ONC
prescribing standards which means that public health must also expect to
receive the information using the same standards, but those are often — public

Report volumes. The number of — cases and of gonorrhea cases and other
things that are reported electronically to public health will rise in volume
very rapidly. The timeliness and completeness of reporting has been shown to
increase with electronic automated reporting in several studies.

The information becomes reusable by public health agencies and other users.
But there has been a change in the power differential if you will between
public health and hospitals and professionals whereas in the past all of these
rules are being set by local and state law which still applies. Increasingly
there are industry wide standards and public health is not the ruler overall,
but is now a participant of the process and often it feels like dancing with
elephants. We are talking about connecting electronically with a business
sector that is a lot bigger than public health.

A few ideas that I think you are familiar with that come up often in this
business. There are three general types of standards. What kind of format the
information is being inserted into such as a message or document version. An
implementation guide that helps defines how these are populated. The
vocabularies that are selected that are being used to define what goes in the
electronic messaging and then how secure transport takes place.

Actually I am going to stop for a second. How clear is my verbal and audio?

DR. CARR: That is good. We are following and the slides are very helpful as

DR. FOLDY: Very good. The next slide shows the environment as it plays out
over time. You will see that public health gets its information of course
directly from the public surveys, possibly in the future for public health
records — measures such as inspections, testing of the environment. But of
course a huge amount of the information is coming directly from clinicians and
laboratories to local and state health departments who are often exchanging
information and then ultimately — national level reports including NCH of
course and ultimately to the public. We are going to focus on the clinical

If you keep clicking through the slides — you will see that one of the
responsibilities therefore of an agency like CDC is to make sure that the
standard vocabularies are in place so that a gonorrhea test means a gonorrhea
test or even a male person equals a male person and not a female person. It
requires us to develop standards for the formatting of this information and for
secure transport.

A big question that still exists out there is the role of health information
exchange organizations as being mediating exchange of information between
health care and health departments. What I will tell you is talking to many of
my colleagues at state and local health departments is that they to some extent
see themselves as being dependent on HIE type organizations to mediate a fair
amount of this traffic whether or not the HIE organizations are fully
anticipating, prepared for, or even have a business model to do that with
public health is still a bit of an open question.

Some of the tasks that need to underscore all of these activities of course
governance by which standards is selected, the training and technical
development, communication with state and local public health to make sure they
are ready to receive the prototyping and evaluating of different methods and
information exchange. We are looking more at open source development tools to
simplify the cost and lower the cost of these kinds of exchange as well as
using research partnerships to find new models of doing this work.

To give you an example of how electronic laboratory reporting is playing out
at stage 1. Hospitals have to pick one of three different public health
objectives: laboratory reporting, syndromic surveillance reporting,
immunization reporting to do in the first stage of meaningful use. There is
only a new single implementation guide for electronic laboratory reporting
which turns out to be a standard that a lot of public health has not yet
maturely adopted. We have spent a good part of the year making sure that public
health is being able to digest such messages.

Hospitals obtain their certified EHR modules which mean that they meet NIST
testing requirements. And then they use these to send a test message to public
health. And whether they pass or they fail if they send the test message at
least they qualify for that objective for the first year of meaningful use. If
they fail they have to keep trying. And once they pass they have to begin
ongoing submissions of electronic laboratory reporting to public health.

It turns that on boarding a new hospital is a pretty time-consuming process
not just for the hospital, in fact, not so much for the hospital as it is for
the public health agency. The various agencies — agree that public health —
so that on boarding can be done in a manageable way. Large hospitals can be
brought on, for example, faster than small hospitals, but at no loss of the
incentives for the hospitals.

And we have a fairly high level of success in our first year of a very
drastic struggle to get this all up and running. We have 28 jurisdictions now
successfully testing and able to consume these messages and testing messages
coming from hospitals and I think five and growing in production of messaging
with the different hospitals.

I am not going to spend a lot of time on how CDC helps — go back to it if
it is desired. I am going to skip over that. Syndromic surveillance is another
way of doing this business — uses information that it is not patient
identified typically, but it involves just being able to count the number of
health events that might involve certain types of chief complaints, for
example. Considerable work has been done to allow that happen. I am going to
skip over the syndromic surveillance slides in the interest of time.

Where have we come in the first year of meaningful use? You will hear some
say that public health wasn’t going to be ready for meaningful use and indeed
public health was not very ready at the beginning of the program, but I think
that we can see that public health is a full participant and that this kind of
exchange becomes a very important part of the future work of population health.

You saw numbers similar to these at our last in-person meeting with 8700
having attested — health care providers having attested that they forming the
objectives of meaningful use. Only about 8 percent, however, of those
registered hospitals and eligible providers. You register only those who can
attest having done all the appropriate objectives.

Eligible providers are claiming exclusions in a number of areas and some
concern has been raised about the number of exclusions for immunization
reporting and syndromic surveillance reporting. As you can see, there are
others also very high such as providing copies of health information to

We think that overall we have a fairly good new story to tell. Moving to the
next slide on eligible hospital claim exclusions you will see there very low
levels of exclusions showing a fairly high level of readiness. Some of the
reasons that eligible providers are not having as easy a time as eligible
hospitals connecting to their public health entity. First of all for syndromic
surveillance there is really very little out there in terms of standards for
eligible providers. This means there is only one option out of the three that
was really available to most providers so that being submission of immunization
records. Although it was considered an option it is really only the option. It
is not much of an option.

Many of the eligible providers actually don’t give immunizations certainly.
Most dentists, many subspecialties, also many jurisdictions. Immunization
registries are only authorized — children’s immunizations which exclude many
adult care only providers such as Medicare providers. Many jurisdictions still
lack immunization registries. There are some mismatches in terms of HL7 version
and other stumbling points that might be that the electronic health record
acquired by a professional practice might not be able to communicate yet with
the immunization registry in that community.

When it comes to syndromic surveillance again the fact that syndromic
surveillance systems and public health are mostly focused on hospitals and not
professionals and that out-patient practice means that there is not much
maturity of standards there, but new standards are being developed that
hopefully will be ready for use in stage 2.

Looking for reasons for exclusion of electronic laboratory reporting we do
see a relative lack of readiness by public health in beginning of stage 1 to
accept 251 messages, but we have turned that around very quickly. Now over 28
public health agencies, typically state-level agencies are now reporting being
able to digest and to test from hospitals the new 251 HL7 standard and that
number is rising fast thanks to considerable work on the part of —

(Phone line got dropped)

DR. WARREN: (off mic) If stage 1 only require us one of the four. Stage 1
requires one of the four. You can meet stage 1 if you had an immunization —

DR. SUAREZ: No. Stage 1 had 15 core measures and 11 menu measures, but 3 of
them were related to public health. Providers and hospitals have to select 5 of
the 11 menu — one of them had to be public health.

DR. WARREN: So you have to select one of the four?

DR. SUAREZ: Yes. But by selecting one of them what he meant was that they
selected immunization exchanges. Then it meant that they needed to only perform
a test. It was very low level. And the test could be on one of the versions:
251, 231, et cetera. The state one was a very entry level menu option and a lot
of organizations.

DR. FRANCIS: That was my understanding of stage 1. My question that I would
love to know is what additional if any plans are there for stage 2 or 3.

DR. SUAREZ: Stage 2 recommendations are basically in two major areas for
public health. One is all menu options would become core. Every one of the
three will be required to be complied with. That is number one. And number two,
the standards would not be two optional standards. It will be one. Immunization
was 2.3.1 and 2.5.1. In the stage 2 it will be only 2.5.1. Those are the two
changes in terms of public health. There were discussions about adding other
public health areas, but none of them were really recommended.

DR. FOLDY: — yet to come out, but it may find — registry reporting as
being a new element for stage 2 and that will then undergo the comment period,
but that is an area within public health agencies where there is a fairly high
level of readiness to receive.

Stage 3 there is considerable work being accelerated to try and make sure
that public health you get more types of different information electronically
and automatically with less labor, data entry, paper records and everything

On the horizon some of the initiatives that are trying to drive towards more
electronic exchange item within the meaningful use incentive program or outside
of it include standards and interoperability projects, laboratory reporting,
the creation of health agencies to know when to report and new secure transport
mechanisms to replace outdated methods used to date by public health.

Looking down the road to population health written more broadly than just
public health surveillance also notable that electronic health records will be
producing quality measures and that these themselves provide a form of
surveillance of, for example, the level of control of the patient’s blood
pressure or the proportion of practices that engage in certain preventive
health services.

The use of health information exchange also provides many other new
opportunities for surveillance that I won’t go into now. And then some of these
tools that are being set up in meaningful use such as immunization registries
or syndromic surveillance could be expandable to allow monitoring of other
issues, for example. Many immunization registries in America — I don’t know if
I would say many, but some already provide a place where tracking a child’s
lead poisoning status. There is some interest in using these to track based on
metabolic index, height and weight of children over time and they may be
suitable for such tracking. Syndromic surveillance programs have been used in
many ways to take a look at chronic and other illnesses, smoking behavior, and
dental care, for example.

And then there is already use of query systems whereby public health
agencies go to a select set of electronic health record stewards and ask them
to produce aggregated — of care. We will be looking forward down the road.

My conclusion — the electronic health record as it is being developed
meaningful use already provides three novel — of population health. There are
improvements to mandated public health reporting which I spent most of my time
talking about. There is the new aspect of quality reporting which is a brand
new potentially massive data stream for population health. There is the
creation of registries both inside the electronic health record, but also the
aggregation of registry information at the community level more and more
accessible as electronic health records become more common.

And finally something that I know this committee has spent a lot of time on
the capability of potentially reaching into the EHR with queries about the care
provided and the conditions encountered. And with that I have left you with a
couple of websites that will give you more detail about public health to
implement the meaningful use objectives and with that I will stop.

DR. CARR: Thank you. Thanks very much. We have a couple of questions now. We
will start with Bruce Cohen.

DR. COHEN: Seth, thanks. This was very provocative. We are the National
Committee on Vital and Health Statistics and I really wanted to focus on vital
statistics for a moment. In terms of your vision of meaningful use and how each
EHRs and vital registries will interact, there was one particular pathway slide
where information goes in both directions although the focus of your comments
related to how EHRs were used as the source of information that led to systems
that focused on population health. If you could talk a little more specifically
about your vision related to vital statistics and meaningful use and population

DR. FOLDY: My position is not necessarily that of NCHS, but I know that both
they and I do have the belief that vital reporting of births and deaths is both
labor intensive and rather klutzy that is current iteration between health care
and public care. And that as HRs begin collecting information more uniformly
and in a better standardized fashion it may be possible to automate or at least
semi-automate some of that work in the future.

I think the big question will be the level of readiness for that information
exchange by stage 3 of meaningful use. Our understanding is at the pace at
which the industry wants to be able to see what it is going to be asked to do
and by when we would need to have basically ready for industry standards worked
out as soon as fall of next year in order not to be asking both the EHR
industry and for that matter the health care industry and the public health
agencies to do the impossible in too short a time.

The standards and interoperability, public health reporting project that I
flashed by very quickly on one slide and where I have listed the Wiki site is
this week requesting that people submit user stories that we might look at
trying to come up with industry ready standards as soon as next fall. I don’t
know the likelihood that vital stats will or will not be ready, but my belief
is that there are people participating in that project who will put their best
foot forward and say what kinds of standards might we be able to develop in
time for stage 3. If they are not in time for meaningful use, I am not sure
that that is the worst thing in the world because our goal would be to keep
this process going so that more and more types of public health reporting can
be standardized and then automated.

DR. COHEN: You talked about births. Any vision for deaths or is that just
much further down the line because of the existing data collection in process?

DR. FOLDY: I am not sure I am the most expert in that. I think I might have
said births when I probably should have said vital records. Except for the fact
that a lot of public health reporting occurs around the time of a child’s
birth. There is a kind of a natural interest in the huge overlap that occurs
between the birth report, that first hepatitis B shot given in the delivery
room and all kinds of other events that happen in very short order like newborn
hearing screenings. There has been probably more attention to birth for that

DR. COHEN: Births seem a lot more logical to me since about 60 percent of
all deaths don’t occur in hospitals. Thinking about a systematic approach of
using EHRs to populate death certificates is a little more complex in my mind.

DR. SUAREZ: Hi Seth. This is Walter Suarez. I have a couple of comments and
a question. In one of your slides you mentioned stage 3 as possibly starting as
early as October 2014. That would assume stage 2 would be only a yearlong which
would be quite complex to jump from a stage 1 three years to a stage 2 one year
and then quickly to a stage 3 a year after that. I am not sure if the industry
will be able to particularly vendors and the regulatory process itself will be
able to support that kind of a sequencing of basically finalizing rules in some
time May of next year for stage 2 and then immediately trying to ramp up and
write rules for stage 3 so that they can be also published by the end of next
year so that they can be adopted and changes be done.

DR. FOLDY: I heard about the extension of stage 1. I have not heard any
definite statements out of ONC about the timeline for stage 3. I am just trying
to let people know what my — I don’t know what will happen.

DR. SUAREZ: The other question is about the standards on interoperability
framework and the public health reporting initiative. I know that that
initiative has not been embraced fully anyway by the ONC and it is still
considered to be a “community-lead initiative” which means basically
that there is very little support provided for the initiative. Do you have any
sense of what the reasons might be for not supporting it fully and whether
there are other vehicles to have it be moved forward? I am, again, concerned
because seeing the speed at which the other initiatives are going and because
they have the full support of the ONC contracting infrastructure and comparing
it to the very limited support for the public health initiative I am just
wondering about the ability to achieve the outcomes if there is not a formal
endorsement and full-fledged support for it.

DR. FOLDY: This is the first community supported initiative in that it was
proposed not within ONC, but by members of the public health community along
with vendors and health care providers. CDC is providing some support now, more
formal support to the initiative financially. The endorsement of the initiative
is upcoming issue for ONC. But one thing that we have been — I have been led
not necessarily to expect major resources and that is not necessarily because
of interests, but the resources that you may know are definitely declining at
ONC in the current budget situation. They are coming off of a very large bulge
of renewal act funding which is definitely in a downward direction. I believe
they are extremely interested and in fact the aspect about our doing this, but
their resources we are being told.

DR. SUAREZ: The last comment and this is following Bruce’s point being the
National Committee on Vital and Health Statistics. I think one of our plans for
2012 at least that we will be discussing with the standard subcommittee is the
focus on public health data standards and to elevate that voice even stronger I
guess to a stronger point and to begin to look at the work that is needed in
areas like vital statistics, birth and death reporting. We actually were
yesterday at the National Association of Health Data Organizations presenting
and the comments coming back from the attending people were that there is an
important need to continue to pursue standardization around that. Vital and
health statistics is going to be certainly public health data standards and
vital health statistics will be one area for us in the next year.

And then also, the disease surveillance reporting which is different than
syndromic surveillance. Some people might be thinking that syndromic
surveillance means the reporting of the reportable conditions to states, but
syndromic surveillance is a totally different system. The reporting of
conditions in the disease reporting system is going to be one of the areas that
we hope we will be able to get into and I am hoping that one of the use cases
of the standards and interoperability framework will be focusing on that. This
is more of a comment of something that we expect that we will be getting into
that will be aligned with the SNI framework and that we hope that that SNI
framework initiative can come back to the committee and to be heard on that

DR. CARR: I have Mike, Leslie, Raj, and Larry.

DR. FITZMAURICE: A quick question. I noticed on slide 28 you have four
information sources for population health. The bottom right hand source is
registries. Do you get much registry information now and do you make use of it
for syndromic surveillance? I know you get immunization information. There is
an HL7 standard for that. Do you have standards for other registries and are
you getting such information?

DR. FOLDY: There is a confusing universe of registries out there. In fact,
whenever Congress wants to know something more about a disease, they will often
tell CDC to start yet another registry. There are different registries for
stroke care and for newborn heart defects and others. And then there are also
registries that are being created inside the EHRs, the ability to define a
better patient that share a number of conditions.

What I see over time but I don’t see a clear path yet, it will have to be
worked out, is how that electronic information starts to populate both
registries inside an electronic health record and that maybe serving stage or
even sometimes local surveillance and action needs. But that is an area that is
very under developed at this point.

The term registry links them and of course that simply represents a
collection of people that meets the qualifications to be in the register.

Syndromic surveillance has not been very involved with registries because
most syndromic surveillances is devoid of most personal identifiers whereas a
registry implies that typically that you can link information from many sources
around an individual. Of course for that you need an individual identifier.

DR. FRANCIS: I am trying to get a picture of what the worst case scenario
might be as we move through stage 2 and stage 3. And I am looking at your three
tsunamis’ slide and where the question marks are. I am assuming that there is
something of importance about the question marks being before or being after
the phrases.

DR. FOLDY: I am not sure that is terribly significant.

DR. FRANCIS: I just wanted to know, but more generally on a pessimistic
picture is what stage 3 likely to look like if the question marks don’t cash
out that meaningful use from the public health side will basically require
immunization reporting for those who aren’t out of it. Syndromic surveillance
if we can figure out some kind of format for it. I am not sure what happens to
laboratory reporting.

DR. FOLDY: Let me give you my worse case. Worst case scenario is that we are
better off at the end of meaningful use we were at the beginning simply because
not only will there be many providers submitting information by immunization
registries, electronic laboratory reporting, syndromic surveillance but weren’t
before but also that the standards under the pressure are much better defined
and constrained so that in fact there is going to be a lot of electronic
reporting at the end of this initiative than we might even have dreamed of
before anybody suggested the idea of a meaningful use incentive program. That
being said it is unlikely — universal because these are voluntary programs and
it will not be easy and again some of the real drivers of the not being easy
part is the fact that health departments and even CDC are trying to accomplish
these goals with less — and more resources. It is going to be a hard — to get
to a better place. That I have very little doubt about.

How much better could we make it? I think the first question — there are a
few things that could be done that could really hurt public health. One might
move ahead so quickly to the transport protocol that secure for a transport
protocol that public health does not have the ability to keep the pace. That is
one of my priorities to try and make sure that we keep pace with the — new
transport protocols because public health established standards is kind of old
and clunky and probably not going to support — in the long run.

The HIT policy committee has clearly expressed interest in forecasting that
immunization information exchange should be bidirectional in stage 3. And by
that the user of an EHR can see other immunizations their patient may have
received from other providers because the immunization registry can show them
that information from within the EHR, but also the possibility that machine
logic can tell a provider — why don’t you catch them up to that.

I believe the odds are fairly good in part because the immunization registry
program has — funding stream that this degree of readiness can be achieved by
stage 3.

In terms of adding a whole lot more new stuff to the meaningful use program
on behalf of public health clearly the pressure in the industry right now to
ONC the message is pretty loud and clear. Could you please keep it simple?
Whether or not things like cancer registry reporting or other types of public
health reporting stage 2 or stage 3 is going to be worked out in that pressure.
However, every bit of work we do to make that possible — somewhere down the
road. The reason I say that is even if health care organizations don’t want
their incentives to be held in — because they didn’t achieve these goals. This
reporting for them is fairly labor intensive and extensive. As EHRs mature they
will want to move this information to electronic forms over time whether the
meaningful use incentive program is there or not.

DR. CARR: We actually have run 15 minutes over. We have two quick questions.
Raj and Larry.

DR. CHANDERRAJ: My concern is for adaptation of the immunization program. I
don’t know about the Eastern United States but most of the states that I come
from pediatricians are refusing to adopt electronic health records because they
don’t take Medicare or Medicaid patients. And the majority of the private
practicing physicians do not therefore transmit this data and they constitute
the bulk of the practicing physicians who cater to well-insured patients.

DR. FOLDY: Good question. Many immunization registries even today have
fairly high levels of completeness of immunization reporting even though they
don’t rely on EHRs. What they do rely on of course are billing records instead
which have their issues, but these have been worked out over time. Direct EHR
to immunization registry is only one of the pathways we use to populate the
immunization registries. In the future it will probably be the best, but it is
not absolutely mandatory for immunization registries to succeed.

DR. CHANDERRAJ: One other comment is, what is your take on the quality of
care data emerging from the adoption of electronic health records. There is
some controversy of whether that improves the quality of care and some papers
saying that it does not. What is your take on that?

DR. FOLDY: My take is only my opinion and I am sure it is both. And it will
take a while for health care to adjust to both the promise and — of the
potential risk of electronic health records.

DR. GREEN: Seth, thank you very much for the slides and the presentation. I
have questions that can be answered very briefly. One is about a clarification
of the vision, the public health informatics vision and the other is about the
location of integration. The vision question is does the CDC and do you in this
office envision this being a universal population coverage proposition or are
you seeing it as developing a sentinel system of some sort where some portion
of these various types of providers are part of this integrated system.

DR. FOLDY: I am not sure how far I can see down the road. It would not
surprise me that some number of years from now having an EHR is the price of
doing business in medicine and health care. And if that is the case the fact
that we have nationally adopted standards for information exchange will make
health care — public health interaction near universal, but I wouldn’t say
when. I won’t be pinned down to that. What was the second question?

DR. GREEN: So that is unclear at this point is what I heard the answer to
be. My question is where in the federal enterprise does this vision in your
office interface with CMS and NIH and for that matter other federal agencies.
Where is the location where this public health informatics can be discussed

DR. FOLDY: I have been looking for that — it is one of the reasons I felt
it was important for CDC Atlanta to resume its chair and NCVHS liaison. There
is also being formed in HHS a new health and human services domain IT steering
committee that takes seriously the information architecture of the different
operating divisions of CDC, HRSA, CMS, and others across HHS and I have hopes
that we can continue to bring these issues and hash them out there.

DR. CARR: Okay. Thank you, Seth, very much for this presentation and your
PowerPoint. Very helpful. And with that we will conclude today’s meeting.
Debbie wants to update us.

MS. JACKSON: As you know this afternoon the three groups will be meeting
just in serial fashion starting with three right now, the community health
information project, at four, one-hour session on populations here, and five,
the one-hour session on privacy. Tomorrow standards will be in this room again
using the same number we have been using for people to call in. Quality will be
downstairs in the Jefferson Room on the first level. That will be starting at
8. Then we are together in plenary at 9:30. Tomorrow sessions have an hour and
a half for breakout, and today because they are all sequential have an hour.

DR. TANG: Do we stay on this line for the breakout?

MS. JACKSON: Yes. For quality we sent you the quality numbers. It is a
different number than what is in this room because it is meeting concurrently
with standards.

DR. TANG: But for the privacy on this number.

DR. CARR: One last very important thing. Walter represented us at the WEDI
meeting to accept our award.

DR. SUAREZ: I just wanted to show you all the very first award ever received
by the National Committee on Vital and Health Statistics. It was given by WEDI,
the Workgroup for Electronic Data Interchange. It is probably the second most
important award in the WEDI series of awards, the highest one being the Louis
Sullivan Award which honors a person. This one is a Leadership in Technology
Award. It was presented to NCVHS in recognition of your vision and leadership
contributing to the advancement of EDI and eCommerce in health care October of


DR. CARR: Thank you everyone. I guess we will take a couple of minute break
before we start population. Five-minute break and five only.

(Whereupon, the Full Committee adjourned.)