[This Transcript is Unedited]




June 17, 2010

National Academies of Science
Keck Center
500 Fifth Street, N.W.
Washington, D.C.

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


P R O C E E D I N G S (1:10 p.m.)

Agenda Item: Opening Welcome

MR. REYNOLDS: Good afternoon. I’m sure there will be other people coming in
and out as we proceed.

Before I get going, I would like to have all the current members of the
Committee and the past members of the Committee stand up, minus the chairs,
we’ll get to you later. Thanks to all of you immensely, and also the staff and
their support groups that have helped us. That is an awful lot of people in
this room, so please stand up so everybody can see you.

Nothing could be more apropos than, nobody claps for the Committee, but
anybody near the Committee knows who is really important. So that is exactly as
it should have been. Thanks for orchestrating that without any notes. That is
exactly how the world should be run, right there. Well done.

My name is Harry Reynolds. I am the current Chair, and when you get
finished listening to me today, I’ll be the past Chair of NCVHS, and I will be
introducing the new Chair at the very end of this.

It really is ironic to be celebrating the 60-year history of NCVHS at a
time when daily there are significant and relevant announcements or actions
that influence or are influenced by the work of this Committee. Most of you in
this room literally are touching today’s activities, by the fact that you
planned previously, are planning now, or we have plans in the future.

What an exciting time to be devoting one’s energy and professional capital
to this Committee’s work. It sounds like maybe a preacher or something, but
those of us who have been involved in this, you truly are. NCVHS is the
ultimate opportunity to join a 60-year relay race, with professionals that are
at the top of their license and collectively dramatically better than any of us
imagined we could be a part of something.

We former or current NCVHS members and staff and their energy, commitment
and willingness to contribute is clear and consistent in an ever-surprising
way. The energy from the past chairs alone — and I have had a chance to spend
time with them — is invigorating, no matter what yesterday was or your
tomorrow is going to be. It was an invigorating opportunity, and the same thing
with people.

Opportunities come and go, but an NCVHS tenure keeps on affording that
sense of accomplishment. I know that from anybody I ever meet that has been
anywhere near, including staff and others. That is what most people feel.

So welcome to the celebration of the human spirit, directed at relevant
subjects in an open and collaborative way for 60 memorable years. Thank you to
those who carried the baton this far, and best wishes to those that are
carrying it forward. NCVHS is an institution, we are its caretakers, and we
includes members, staffs and all the testifiers that supply us information.

Now what I would like to do is, I would like to introduce Dr. William Eddy
from the Committee on National Statistics to continue the welcome. Dr. Eddy.

Agenda Item: Opening Remarks

DR. EDDY: Hi, I’m Bill Eddy. Nobody calls me Doctor. On behalf of the
Committee on National Statistics, we are really delighted that you are here.
You celebrated your 50th anniversary meeting here at the Academy back at the
old building, which unfortunately is closed now for renovations, so for the
next couple of years we don’t get to use that building while they change it
into a modern building. I was told that there are pictures of the leadership of
your committee by the statue of Einstein outside that other building. I hope
that this meeting is as memorable as that occasion must have been.

I want to briefly tell you about the Committee on National Statistics here
at the Academy. It is a permanent committee of the Academy. It was created in
1972 as the result of a Presidential commission. Its purpose is to improve
statistical methods and information on which public policy decisions are based.
The committee carries out studies, workshops and various other activities to
foster better measures and fuller understanding of the economy, the
environment, public health, crime, education, immigration, poverty, welfare and
other public policy issues. It evaluates ongoing statistical programs and
advises on statistical policy and coordinates activities of a highly
decentralized federal statistical system.

Our work is supported by a consortium of federal statistical agencies
through a grant from the National Science Foundation.

Over the years, CNSTAT has undertaken studies related to the portfolio of
NCVHS, including a series of studies on confidentiality and data access issues
for surveys and administrative records data. The latest report in this series
will be released within the next week. It deals with data collection, storage,
confidentiality and access issues for biospecimens, and was commissioned by the
National Institute on Aging.

CNSTAT has also studied such key health data sets as the NCVHS provider
surveys and the vital statistics program of NCVHS in the states. This very same
day in another room in this building, we are running a workshop on data sources
for monitoring adequacy of children’s health insurance coverage.

In its work, CNSTAT has turned to and values the reports and minutes of
your meetings. The NCVHS plays a vital role in advising HHS about fundamental
issues of data standards, quality, confidentiality and access, which will be
even more important during the implementation of health care reform, and
hopefully what will be major steps forward for a cost effective health care
system for the nation.

I welcome you all. I hope this is a really great meeting. Thank you.

MR. REYNOLDS: Next I would like to introduce Dr. Ed Sondik. Dr. Sondik is
the Director of the National Center for Health Statistics, but more
importantly, a dear and consistent friend to the Committee. Ed, we really
appreciate your support and the support of your organization. You guys have
been nothing but a plus.

Agenda Item: Reflections and Challenges

DR. SONDIK: Thank you very much. It is quite a day. I went over the 50th
anniversary volume. I don’t know how many of you have looked at that, but that
is really something, to go back over that and look at the history of this

You said that NCVHS is a friend of the Committee. Actually the Committee is
in a sense the father or midwife, or I’m not sure exactly what the relationship
is, to the National Center. I think you all know.

We are celebrating this year our 50th anniversary. It is always hard to
pinpoint the exact date, but this is the 50th year that we were transformed
from one thing or another into the National Center for Health Statistics. Our
now biannual meeting, this year we are making it broader than it has been in
the past, it is called the National Conference on Health Statistics, will be
held at the Shoreham August 16-18. The 16th is very much a hands-on day with
the emphasis on enabling people to get their hands on the data, understand how
to use it and so forth, and then the talks on the 17th and 18th are broader
than the Center, building more on the uses of the data and the challenges in
the data and in the data collection. So I encourage you all to come. The
admission price is zero, so take advantage of it, please do.

I just thought I would give some reflection and a bit on the challenges. I
see this meeting as about the challenges. I think that is terrific. But I also
think that to understand where to go with the challenges, it is important to
reflect a bit on how the Committee got to be here.

If you go over that history, and I will take some license with it, the
Committee has morphed, not even evolved, it has been on one form and stayed
that way for the first 15 years. The first 15 years were very much technical
years as I read it, focused on the ICD and the visions to the ICD.

Then it morphed into looking more at some of the things it had helped
create, like for example the health surveys, the health care surveys and the
supportive vital statistics. It has moved through time.

Who would have thought in 1949 — of course, no one would have thought
about HIPAA. No one would really have thought about the dissemination of health
information. In fact, there are very few people in this room who can remember
1949, and I won’t have everybody stand up who can remember it. I have some
memories, believe it or not, you probably do believe it, I have some memories
of it. It is trite to say, but it was a long time ago.

Not very many years after that, when I started getting into health and
analysis and the operations research uses of health data, the health data
enterprise was in a very primitive stage compared to where it is today.

The Committee has, as you pointed out, really made an impact. It seems to
have always been right ahead of the challenges, so it wasn’t doing cleanup, it
was doing preparation. That was certainly true of the ICD, it was true to
health care surveys. It was even true as late as developing the vision for
health statistics for the 21st century, in which it really was ahead. That is
an area where I think we do need more work. In fact, I think that is one of the
challenges that we have, which is the organization of this enterprise. I will
say a little bit more about that.

I wanted to just highlight some of the accomplishments over time. One has
been — and I think it continues to be a push, but it has been an
accomplishment which is the focus on population health. In part, the Committee,
I view, began there. But yet, it really was focused more on the technical side.
It was only later that it started looking at health as more than health data.
Do we know population health? What information do we need to improve population
health? I think that continuing theme is particularly important.

The morphing of the Committee was very, very evident as it dealt with
HIPAA. It was certainly not a technical committee, at least the way I see it,
but it was a link between the Secretary and the Department and the public. It
was a vital link. If the Committee didn’t exist — I think Marjorie and I once
had this discussion — it would have had to have been created in order to have
that link, because it was clear that it was necessary.

The Committee has been early on in electronic health records. This is going
to change what we do in the National Center for Health Statistics. Exactly how
to me is not clear, given there are major issues that are yet to be understood
about quality, about how we use the data, issues related to representativeness
and so forth. But again, the Committee is on top of that.

Fundamental to the Committee and to health data is classification or
classification systems. Frankly, that has never been something that has
completely turned me on, but where would we be without it? I understand the
need, but I don’t think my attention span is long enough to have stayed with
ICD-10 for example as long as it has taken. But it is crucial. NCHS’ role led
by Marjorie in this area has made a very, very important contribution to North
America, since we lead the WHO collaborating center, but also to the world, for
that matter.

Issues related to privacy and security that the Committee is dealing with.
I left my report on the chair, but it is critically important. I want to say a
few words about that in a second. And something that I view as linked with
population health, which is addressing disparities, measuring disparities, and
understanding how to get the data to help us to address these disparities, is
something the Committee has dealt with. So I think the Committee is clearly to
be congratulated for this.

It raises the question that was raised ten years ago and I think could be
raised again today: What is it about this Committee that has enabled it to be
there ahead of the wave, so to speak, to see the issues as they are coming

I think there are two elements to that. One clearly has been the members of
the Committee. I think we have had a stellar group. In the 15 years or so that
I have focused on the Committee, it has been a stellar set of intellects and
experiences that have been brought to the Committee.

The other is the staff. I think the staff has been stimulated by the
Committee, and maybe, I hope, that the Committee has been stimulated by the
staff, to continue to address these important issues.

This is James Brown. He was called the hardest working guy in show
business. This is without a doubt the hardest working FACA committee that I
have seen. It goes on almost without complaint, almost without complaint. Not
that you have complained. I mean that it is really incredible, the amount of
work that this Committee does in a year. The other advisory committees that I
know meet less frequently and do not have the rigorous schedule that this
Committee has.

Let me just talk a bit about some challenges which I think relate to the
concept paper that is going to be discussed. These are challenges more from an
NCHS point of view.

First, there is the challenge of every year deciding what information we
should collect. As Bill said, there is a committee meeting on children’s health
insurance. Clearly what comes from that committee is going to relate to us.
These are the questions that we face not just once a year, but continually
throughout the year, how should we modify the tools that we have, and/or should
we develop new tools, and how do we do it all within a defined set of

How do we take account of the other information that is being collected and
the quality of that information? It is a significant challenge. The guidance
that we get from this Committee and the guidance that we also get from our
Board of Scientific Counselors, the guidance we get from around the Department
and outside is all crucial.

I think we could do a better job on the organization of that guidance. But
even as I say that, I think that is more wishful thinking on my part. I think
this is an organic thing, and it changes and morphs over time.

The second challenge for us — just one other element in that. One major
gap we have in the data that we collect is that we have very minimal
longitudinal data. So while we have, I think one could argue, very good point
in time information on the state of health care at any point in time, or on the
vital statistics in a given period of time, what we don’t have is very good
information on the person state, I won’t even say patient state, but on the
state of us and how we evolve over time.

There are some longitudinal surveys, but I don’t think they meet the needs
that we really have. I should emphasize, one of the things we do is, we do have
rudimentary — we transform our point in time surveys into rudimentary
longitudinal surveys because we link them to the mortality data, which is very,
very important and not used to the extent that it really should be.

But in order for us to understand health and how it changes, we need to
understand what happens over time. For those of you who remember the diagram in
the front of the vision report, which shows all of the various influences on
health, we need to understand how those influences change the health state and
the trajectory of the health state over time.

Dissemination is a considerable challenge. But I can’t talk about
dissemination without talking about confidentiality, privacy and

In the past, and in my own thinking probably until about a year ago, or
until I started going to meetings, which is about a year ago, on Data.gov, I
really thought that what we did on disclosure review was terrific. We have a
team that reviews everything before we put it up on the Web, before we create a
public use data set. We have technical advances, where people can access the
confidential data in a way in which confidentiality will not be violated. Not
all that many people can do it at any point in time, and it is not all that
easy to do. It is limited, to a degree.

But I thought the disclosure review that we did was really terrific. Then
Data.gov came in. Data.gov is an outgrowth as you know of the President’s open
gov initiative. The idea behind it is very simple. As one of the high officials
in HHS said the other day in a meeting related to this, all that data was
stored in these big black volumes and locked away someplace in a safe, and now
we want to liberate it.

I don’t think that is exactly true, of course, to say the least. It wasn’t
locked away. But the fact of the matter is that it wasn’t all that easy to get
to. Data.gov has made access to or knowledge about this data, because the
access has been there, knowledge of it is now more widespread. There are more
and more people who will without a doubt begin using this data. At the same
time there are more and more collateral, if I can use that term, data sources.

We have something that I learned. My knowledge, my education was sorely
lacking, but a year ago I learned about the mosaic effect. The mosaic effect is
something they worry about in national security, where information goes out
that has been completely laundered, but it turns out that data, let’s call that
A, relates to something called B, which relates to something called C. It turns
out when you put A, B, C and a D together, you can identify troop movements, or
you can identify where the fuel depots are.

I’m not making that up. This was told to me by one of my Data.gov
colleagues in the national security area. It really is a source of concern for
all of us who are concerned about data, because it means that the likelihood,
in fact, the probability of a disclosure goes from very, very small to
something larger. I feel that we don’t even know how to describe that
probability at this point.

So the challenge that I feel that in NCHS we are most concerned about has
to do with privacy and confidentiality. Disclosures will certainly hurt our

Lastly as a challenge for us, it is the coordination of all of these data
sources and the dissemination. We recently launched — I should say, the
Department recently launched with our support called the Community Health Data
Initiative. The goal is to take these data out of the black volumes in the
safe, stored underneath Don Dettmer’s house, University of Virginia, — they
used to have it in one of those resorts, but they learned about it — and take
that data and move it from the national level to the community level, not the
state or the local, but the community level, and bring people together who
create computer applications with those who understand and know the data, and
then make these applications available to the public at large, and then see
what happens. It is kind of like letting the genie out of the bottle.

I think the coordination and the evaluation of all of this is going to be a
significant challenge. At the same time, I think the best purification for this
is sunshine, but we have to let it out there. There will be organizations that
will spring up that will evaluate these applications, just as we have when we
go out to buy something.

I think buying something is one thing. When we are dealing with the
public’s health, I think it is a more sacred trust than that. I think this is
going to be a challenge for all of us.

I think the Committee is up to it. I wonder what this is going to look like
in 120 years, but for that matter, I wonder what it is going to look like in 20
years. It has been about every ten or 15 years or so that the Committee has
changed. What has persisted is this ability to look ahead, understand what the
challenges are, and bring the expertise together to advise the nation on its

I thank you for inviting me. My best to the Committee on this anniversary.

Agenda Item: Toward Enhanced Information Capacities
for Health: NCVHS Concept Paper

MR. REYNOLDS: Most of you when you go to a party you don’t have to work.
But all of you have been associated with NCVHS, so welcome to the meeting. All
of you know Marjorie and Debby and Jim. You don’t think we came to a party
here, do you?

One thing good, we don’t have to ask you whether you have any conflicts. You
are not going to get to say anything.

As part of this preparation, any time you have something big coming up, it
is good to focus on what you ought to think about and how you ought to look at
things. So the 60th anniversary, we want to take a look at a concept paper. For
those of you that have been involved in it, you don’t usually see us doing
concept papers. If you do a paper and you haven’t had a chance to completely
vet it, you would call it a concept paper. We might be slow, but we are not
stupid. Since we are a very public organization, no way, who we are going to
hang out there.

So we have prepared this document. We have gone through it as a group. You
are going to hear after I have finished representatives from each of the
subcommittees, is going to get up and tell you a little bit about we are going
to do about it. I am just going to take you more or less through the structure
of the document. There is a copy of it out there.

Even today, what was interesting as we were going through some of our
presentations today, even the new challenges that are coming up in information
just keep jumping out at you as to what you have to do. So a lot of you that
are sitting here go, we worked on information when we were here. It is
changing, it is morphing, and we are going to deal with it.

So what an exciting time. As I said earlier, it is an amazing time to be in
this industry, to see what is going on, and on the other hand trying to change
it. Lots of legislation, unprecedented opportunity. The future really does
depend on that information.

As we get more and more into it, it is easy to generate information. These
are the front lines of care, not just captured later but used in front lines as
a step. Easy to reuse, manipulate in a good way and link it. That came up even
today from Ron, as one of our former co-chairs, who stood up and said, have you
guys figured out linkage yet. He was wrestling with that in 1986. I can
comfortably say that the linkages in 1986 are multiplied significantly now. So
we didn’t have linkage figured out in ’86; we are struggling to do the same

Secure and private. If you have followed NCVHS at all, we have tried to
focus on this stewardship philosophy. It is not just privacy, it is not just
security, it is the stewardship idea of truly taking care of the information,
and then generate it from new and existing sources as you go about it.

The health information capacity in the public sector has led most of the
information efforts for years. HIPAA marked a renewed emphasis on health
information. ARRA elevated the focus again, and obviously NCVHS supports and
will continue to promote that.

As we look at the kinds of purposes — this is a significant list, and I
will let you look down it, but when you start taking these now, and you look at
all the capabilities out there, if you say care coordination and then you think
of EHRs and health information exchanges and the NHIN care coordination, it
takes on a whole different meaning than it might have prior to those. Care
coordination is pretty much whether the caregivers were working together; now
this is whether the information is there. So simple words take on dramatically
different meanings as we go through this ebb and tide of what we are dealing

Then building patient trust. If you look at any of the surveys of do
patients truly trust their physician, they trust their pharmacists. But in a
lot of speeches around the country, I ask how many of you use the Internet for
banking and for other things, and it is almost unanimous, and you get about
five percent of the hands that want their information on the Internet, their
health information, so we have got to get that patient trust to where they
understand that.

Patient safety, the health insurance operations, elimination of
disparities. The Committee has done a lot of work on that in the past. Then
clinical research which is more and more important as we look at new and
different things to do.

So the key goals are accessibility and availability of the information. One
of the terms we are coming out with in this concept is that it really is an
integration between public health and health care. One of the things that
Garland Land brought up today for example is the availability of some of this
population health every quarter now. Not waiting two years to get it, not
waiting three years to get it; get it every quarter and have it more real time
and usable. So we are much closer to when it actually happens.

The third bullet down is increasing information on environment, housing,
education, nutrition, economic and other influences. We heard today a
presentation about inhalers that are being used for asthmatics that have a GPS
on them. Every time the person uses it, GPS knows where it was so that they can
study a city and find out where the places are in the city that may truly
affect the asthmatics. That is new and different. That has also got every
subject that I talked about, privacy, security, who is watching who, what is
going on comes to bear.

So as we take care and we take technology and we combine them, we create
new, exciting, different and many new assignments for the Committee to deal

Standardization. If you look at the new health reform bill, NCVHS is
prominent in the discussion about standards, and in there on a regular basis as
we do things. You will hear a little more from Judy Warren on that.

Back on that previous one, things like meaningful use. The Committee has
already held the first hearing on meaningful measures for 2015. We held the
first hearings for meaningful measure. ONC has taken the lead, and now we have
had some discussions about what 2015 might look like. So staying current,
working on the current things, and then staying somewhat in the future.

Privacy, confidentiality and security. I am going to break this into two
pieces, one, the required dependencies for primary and secondary uses. We have
done a lot of work on that. We did a lot on that with Simon when he was chair.
Meeting personal expectations of trust, the fact that data is used in many new
and different ways on a continuous basis, what are we doing there.

As we look forward, the path is clear. The legislation has opened that.
More and more, as we discussed yesterday and in the hearings that are going to
be in July 19, 20 and 21. As soon as the hearings are over, a document will be
prepared by NCVHS, and then an interim final rule can be put out by the
Department, which moves the process dramatically faster. Some of the things
that are already in the bill are going to be implemented in 2012.

The Committee wrote the first letter on ICD-10 in 2003. It is going to be
implemented in 2015. The bill passed in March, has to be a hearing in July, has
to be a decision for things to be implemented in 2012. Different game,
different environment, a much different approach.

Federal leadership is necessary. New approaches have to be explored.
Research demonstrations and investments are important, and obviously data
resources are a must.

In conclusion, and then we will have the individual groups come up and tell
you a little bit about, if we have a concept how do they turn it into reality
in the subcommittees.

Opportunities abound to make a real difference. Health information is
prominent in the future enhancement of health care and health. We are prepared,
enthusiastic. We enter our next 60 years assisting HHS to make a better U.S.
health system and improve our overall population health. Again, a concept paper
put together in a structure. I would really like to thank the Committee for
doing that briskly in a changing environment.

Now I would like to introduce — and I will just mention them all, and they
can come up in sequence.

For Standards, Judy Warren is going to come up. For Privacy,
Confidentiality and Security it will be John Houston. Population Health will be
Don Steinwachs, and Quality will be the new Chair of NCVHS, Dr. Justine Carr.

So with that, Judy.

Agenda Item: Current and Future Thinking: Projects to
Move the Strategy Forward

DR. WARREN: My task is to show you a little bit about what we have done in
the last ten years as a Committee. The first thing I have to do is recognize
the co-chairs. I would like for them to stand.

Jeff Blair was the first co-chair, followed by Simon, who is standing next
to him, followed by Harry who is next there, myself, and then our new co-chair
that will be joining me, Walter Suarez. Without these gentlemen it would be a
very difficult task. They have left big shoes to follow in. We will try our
best. We have been educated by Jeff and Simon and Harry, so Walter and I are

What we wanted to do is tell you what this subcommittee has done in the
past decade. Harry has already given you some of the highlights.

We were first mentioned in the HIPAA legislation as being responsible for
recommending HIPAA standards for electronic transactions, code sets, health
care identifiers and data security. We accepted new members from the Senate and
the House of Representatives, that was Jeff Blair, and our subcommittee was

We then recommended to the Secretary to adopt HIPAA standards. These were
the transaction standards known as 4010, so we knocked off the first letters of
that — you learn very quickly in Standards to talk in acronyms — NCPDP which
is pharmacy, and telecommunications standards. We also recommended code sets
for billing and health claims, ICD-9 at that time, CPT, HCPC codes and NDC. We
worked on unique health identifiers for providers and employers, and we worked
on securing standards for the transmission of data.

We also began to monitor the industry’s readiness to implement all of these
HIPAA standards, and this required quite a few sets of hearings to help the
people that we serve in the country to get ready to adopt, and not only adopt
these standards, but implement them, and then find out what the difficulties
were in implementation, and then try to make more recommendations to make the
next set easier.

We looked at standards for health care billing and reimbursements,
statistics. We had health care providers and payers to implement the initial
versions of the HIPAA standards. So you see the mantra that we deal with. It is
always the transactions, the code sets, the identifiers and then the privacy
and security standards.

We recommended to HHS, and they have adopted regulations to implement the
next version of the HIPAA standards. So the migration to version 5010 and V.0,
which is due in January 2012, these have to be implemented before we can go to
ICD-10, and then ICD-10 quickly follows on in October 2013. So quite a bit of
challenge for our country to implement.

We tell them, if you haven’t started planning implementation of ICD-10 now,
you are about a year behind. So people are really scrambling to get to work.

We set forth a strategic framework and criteria for analyzing and selecting
patient medical record information standards. This framework was endorsed in
2000. The first set of transactions based on this framework were looking at
HL-7, NCPDP, Dicomm for images and IEEE 1073. Those were recommended in
February 2002.

A second set of standards on code sets recommending the use of SNOMED,
LOINC and RxNorm, were set forth in November of 2003. You begin to see that we
get very busy as the years progressed.

We then worked with the government’s consolidated health informatics
initiative by getting them ready to adopt relevant clinical terminologies, not
billing ones. So SNOMED, LOINC and RxNorm have been included in their interim
final rule with specifications, and now some of those standards are flowing
forward into the meaningful use final rule, all for public health reporting and
quality reporting.

Then we hit e-prescribing. This was probably one of our subcommittee’s
finest moments, because for a change all the people who came to testify stayed
and came to each and every meeting. They started collaborating outside and in
the back rows of the meetings in order to make this happen. So it was a really
wonderful moment to be part of that. I had joined the Committee by this time.

So legislation, the Medicare Prescription Drug Improvement and
Modernization Act of 2003, mentioned the NCVHS and gave us the directive to
make recommendations on the standards for e-prescribing. So we made those
recommendations. What has been fun for us is, one of our recommendations was to
encourage HHS and the DEA to collaborate and coordinate on making sure that we
could do e-prescribing for controlled substances. That came into a final rule
this year. So we have been very pleased with the way that that has happened.

Standards for clinical documents. We also recommended in 2005 that the HL-7
clinical document architecture be used as a claims attachment. ONC in their
Health IT Standards Committee has followed that up and said the continuity of
care document, which is based on the CDA, should be part of meaningful use for
communicating medical histories, problem lists, et cetera. So you can see how
we start building, and we have created a tag team in Standards.

Now our challenges. Our new challenge that we have is that — and I’m
sorry, I thought I had edited this out; I am now told that it should be the ACA
of 2010 Act, the Accountable Care Act. NCVHS was mentioned again and it passed
with quite a few different tasks to do, one of which was to make
recommendations to the Secretary about health plan identifiers, so closing up
some of the identifier loops that were first mentioned in HIPAA. We are going
to be very busy this summer as Harry mentioned, because we have to have a
letter to the Secretary by September. As you all remember, this act came out in
March, so very rapid turnaround. Then the health plan identifiers have to be
implemented next year.

We also will be working on making recommendations about operating rules. We
also have to have a letter by September to go to the Secretary on
recommendation of operating rules. This is the actual implementation of a lot
of the standards.

We need to insure that health IT standards are developed within the context
of the NIHN model, public health policy, the data stewardship framework that we
have developed, and also thinking of the needs of users. So you can’t just
think of standards in isolation of doing a wonderful thing. You really do have
to make sure that you are aware of what everyone else is doing and try to make
that a cohesive group.

We need to accelerate adoption of clinically specific standards that were
mentioned in ARRA 2010, and some of the extension that ARRA had on top of the
HIPAA standards, like some of these identifiers and code sets, et cetera.

Our subcommittee feels pretty strongly that we need to start recommending
rules and methods to make implementation of these standards easier. This is one
of the biggest challenges that our health care sector has, is trying to
mobilize their own workforce to understand the impact and how to implement
these standards into their information system. So we want to try to get on top
of that one.

We also feel that part of our job is to do a complete analysis to identify
the gaps and create or recommend solutions for those standards gaps.

We need to work with industry towards a successful implementation of this
next version of the standards, meaning 5010 and ICD-10. The community is
getting very nervous with the deadlines for those, plus the new deadlines that
will be coming out with meaningful use hopefully sometime this summer.

We need to meet new health care requirements such as the health information
needs for medical homes, personalized medicine, clinical research, health
surveys, syndromic surveillance, human genomics and proteomics.

We tried to select a list that showed you the wide variety of data that we
are now tasked with messaging and creating and giving to various people.

The next challenge we have, as if those aren’t enough, is that globally we
are working on health IT standards. So we need to start creating new models for
us, the U.S., to participate in some of these global models and standards

Back to tools. Not only do we have to have tools of helping people
implement, but if you notice in my presentation, we started out with
implementing a version of a telecommunications standard 4010. We are now going
to 5010. So how do we keep track of versioning? How do we keep track of
harmonizing all these different disparate standards? There has got to be some
sort of approach in there.

We feel our ultimate goal in health IT standards is to support the
information exchange needs of a health care system we are talking about a very
broad one. I had spent a lot of time with our Populations Subcommittee trying
to understand what that part of it is.

We also feel that we need to empower consumers to improve their own health.
Harry just talked about a presentation we heard about this morning of using
health care data the government collects to really develop applications to have
consumers manage their health.

So it is not only the GPS on the inhaler, you could also take that down to
a personal level, where that individual can then go back and look, where was I
when I had this major asthma attack. So do I want to go back there again or do
I want to avoid that place so I maintain myself health here. We never had that
ability before.

We want to insure high quality health care is delivered efficiently,
securely and effectively. With that, we also felt that we had to develop a set
of guiding principles for us to look at health care IT. Standards should be
developed with user input. It should not be a closed committee looking at what
they think is the best thing for all of us. There should be a diversity in the
participants to be encouraged, so from all of the health care disciplines, also
from our consumer groups to help develop the best standards.

Standards should be developed in an open manner, consistent with ANSE
guidelines. Not meaning that they are ANSE accredited, just using the
guidelines that ANSE had put together as the best practice in developing

We feel that standards should be developed to facilitate interoperability
and better decision making by clinicians. Standards should not specify
technology, architecture or process requirements. We need to leave it open for
all the innovators in health care IT to come out and help us with new things.

The example that I gave to Harry the other day is, I do work in a school of
nursing. I teach informatics there, both for nurses as well as
multidisciplinary. I had encouraged our undergraduate faculty to help our
beginning nursing students to understand health IT. So I got faculty to finally
agree that students should have PDAs. So three years ago we required PDAs with
reference text, et cetera. Students love them, faculty weren’t too sure, they
were still trying to adopt it.

This last fall our students revolted and said, we are no longer buying
those, we all have smart phones. We carry all of our textbooks around in our
smart phones. So they quit that long before faculty realized they had smart
phones. So we are going to be seeing a very rapid change in technology,
devices, et cetera because of the things that are coming out. So that is our
challenge, is to keep on top of that, keep ourselves educated, and hopefully
come up with the right standards recommendations to keep us in place.

Thank you.

MR. HOUSTON: Good afternoon. I am John Houston. Leslie Francis and I are
going to tag team this next section. I know Harry said I was going to do it. I
am going to do the first part.

I did want to dovetail what Judith had just said in her last sentence,
where she talked about the rapid change in technology. It is going to have a
profound impact on standards, but with that rapid change in technology I think
you are also going to see an incredible impact on privacy and security, and
talk a little bit about that.

I’ll just give you some background for the last ten years. We have had
three chairs of the Privacy and Confidentiality Subcommittee, Kathleen Farley,
Mark Rothstein and then myself, and Leslie are the current co-chairs, as well
as some really talented lead staff, as Judith had said.

About two years ago, we took the security function off of the Security
Subcommittee and rolled it under the Privacy and Confidentiality Subcommittee
because we thought that there was a more natural tie between them. Simon and
Harry were both chairs of that, and then Jeff and Judith were also chairs, so
we have a rich history and a lot of leadership there.

In terms of what we have done over the last ten years, I decided over the
next slides to list all the different things that this subcommittee has done. I
don’t intend to talk about each one of them, but I think they logically break
up into two separate groups.

I think the first grouping of recommendations and letters and work relates
to the HIPAA privacy and security rules. Those are letters providing
recommendations and insight on HIPAA.

You will see though that it goes from 2000, 2004, 2005, 2006. Then about
2006, there is a decided change. All of a sudden the Committee focused its
attention away from HIPAA, not that HIPAA wasn’t important, but we started to
look forward in some of the recommendations out of NCVHS. We started to look at
the NHIN and some privacy and security requirements associated with this
concept of a national sharing of data or regional sharing of data. So we spent
a lot of time talking about that.

We also delved into the interaction of things like HIPAA and FRPA. I think
there was a letter in there about — I can’t remember it, you can see.
Nonetheless, a lot of work went on initially in HIPAA, and then we moved to
look at the NHIN and this changing focus.

Today is what is the challenge in the next decade? This came from the
concept paper. I will read it. With the increasing adoption of the
interoperable electronic health records technology along with the move towards
global access to health data and emerging new uses of data, methods of access
and information availability, there is a significant new and unique privacy and
security concern. That in a nutshell is what is going on right now. Whether it
is on Ipod or a PDA or on a smart phone, it is amazing how the access to data
is changing. If you look at all these different sources of data that either
have been developed or are developing, if you look at the adoption of EHRs and
this whole idea of HIEs and regional sharing of data, it is amazing how much
power we have and how much data we have. But with that we are raising the bar
in terms of what we need to do from a privacy and security perspective.

So appropriate privacy and confidentiality and security protections, data
stewardship, governance, fair information practices, and understanding of the
shared responsibility for the proper collection and management and sharing and
use of health data are critical to addressing these concerns, how we go about
it. We obviously have ways we have to comply with, but you look at things like
data stewardship and governance, and the population understanding what fair
information practices exist and need to exist, they are all incredibly
important and intertwined in trying to understand where we need to go.

In looking at the challenges for the next decade, we pulled the word
balance out of this slide, but I think there is a balance that needs to be
achieved here. Clearly we have to be concerned about protecting individual
rights, that is first and foremost. But there is a need of society, health care
reform, containing costs of health care are all very important, and those types
of needs often require access to data. So the idea of protecting the individual
is not absolute, there is a balance.

Obviously we need to establish appropriate privacy, confidentiality and
security rules and framework, but it cannot impede the efficient and effective
delivery of health care. We cannot get in the way of trying to reduce costs and
improve efficiency and quality. So again, it is a balance, and that balance we
always have to be mindful of, and it is a real challenge.

So with that said, I am going to turn the next part of this over to Leslie.

DR. FRANCIS: First of all, just to think about all the new kinds of
information that are out there. I am sure you are aware of many of these, but
we just made a quick little list of some new data types, new types of genetic
information, new ways that data get put together and structured that can yield
new kinds of information such as the interplay between locations and use of

Web search patterns. Probably the most famous of those was the syndromic
surveillance, Google being aware of the flu before CDC was. Those are just some
examples of new data types.

New ways that data are structured, electronic medical records, health
information exchanges, whatever national health information network turns out
to be, data in personal health records, which are increasingly platforms,
aggregators, the whole idea of the personal health record is a little thing
that I put on my flash drive and leave in my pocket anymore.

Health 2.0 websites. I don’t know if you have heard of Carrot.com or
Sparkpeople, to Patients Like Me, which has become much more well known. The
Carrot.com encourages you to engage in various forms of healthy behavior. It
gives you little carrots when you do well.

Then various kinds of data flows. Think of all the privacy issues that are
raised when patients authorize the disclosure of what is in their electronic
medical record to personal health record, depending on what legal regimes
attach to the personal health record. There could be very different
protections. Data flows from electronic medical records that have been in the
presence of a single facility to health information exchanges or through
national networks, and then from health information exchanges or national
health exchanges for public health purposes, for research purposes, for things
like state all-payer databases or the kinds of community health information
initiatives that we were hearing about this morning and that we heard about
from Ed just very recently.

I will just give you one example that came up. We had hearings on Tuesday,
hearings that are furthering our work on sensitive health information. Imagine
the difference between a domestic violence victim whose children are taken to a
pediatrician for care, when she has a stalker who is trying to find her family.
If the records just stay in the pediatrician’s office, the opportunities for
access or for finding out are very different than if the records end up in
statewide or nationwide exchange and someone, her stalker who she may have left
many states before has some capability to gain access to records.

I was sitting there as I was thinking of the asthmatic kid with the inhaler
cruising around town and the inhaler suddenly gets used, and it becomes clear
that in a particular community inhaler use is popping up massively down by the
river of a Saturday evening, and the stalker of the domestic violence victim
knows that the kid — after all, he is the kid’s father, let’s say — knows
that the kid is a teenage asthmatic, suddenly realizes where all the teenage
asthmatics are likely to be found of a Saturday night. No identifying
information at all, but think about eventual risks of both types of new data

So challenges for the next decade, respecting many values. We think it is
crucial to have appropriate security, privacy and confidentiality protections
to maintain public trust, to protect individual rights and choices. We also
think that access to data, use of data are critical to improving health care.
If we learn that kids use their inhalers down by the river of a Saturday night,
health care of asthmatic kids may be better. We are going to have uses of data
to contain health care costs, comparative effectiveness research. That is
really important. We are going to have improved tools for public health and
biosurveillance. We may learn we want to clean up the miasma down by the river,
and we are going to have enhanced research opportunities of all kinds. Those
are all critically important.

We had a conference that was one of the earlier events of the 60th
anniversary year of celebrations that NCVHS very kindly cosponsored with
Milasko at the University of Utah. We called it something like law and ethics
meet the new world of bioinformatics. We couldn’t think of a really snappy
title; that seemed to capture it.

We had most of the members of the Privacy Subcommittee giving talks, John
Houston, Sally Milam, Walter Suarez and staff, Mia Bernstein and Marjorie also
gave — Marjorie Greenberg gave a talk. Then we had a number of privacy folks
as well or informatics folks from all over the country, trying to scope out the
territory of issues, everything from sensitive information issues, governance,
what is deidentification, what can it mean, what are the comparative risks of
deidentified data sets in different contexts, what are the regulatory roles of
state governments, of different agencies in the federal government, of private
standard setting organizations and on beyond HIPAA, or with HIPAA.

Two current priorities that we are working on that that you may be
interested in. As I have just mentioned, we had hearings. John showed you that
in 2008 we had a letter recommending the capability to identify and sequester
sensitive categories of health information when records are transferred for
proposes of treatment over the NHIN. We are going to be building on our earlier
hearings about sensitive information to make some recommendations about which
kinds of categories of information or general informational questions like an
entire record, which had the address perhaps of a domestic violence victim,
should be thought about when interoperable exchanges or electronic medical
records systems get created to create the capacity to identify these kinds of
sensitive information.

We are not going to look at what people should have control over or what
kinds of controls. We are going to look at what sorts of identification
capacities are critical as these new data structures get put into place. If a
health information exchange is developed without the capacity to identify
sensitive categories of information, it will be the case that people will not
be able to make any choices except all in or all not. So we are going to be
drafting a letter and bringing it to the full committee in September for
consideration of specific categories and how they should be understood.

A second question that we are looking forward to hearings on in September
is the question of governance. Put more generally, how do we make sure that
people who say they are protecting privacy in certain ways actually do it. We
know we have a tentative list. It is about two pages of who the major players
might be in the private sector and the public sector and the quasi private
sector, who play a role in governance.

So our starting place may just be a scorecard, but we are going to be in
September scheduling hearings on the question of governance.

In conclusion, what I want to say is that sometimes I think it is very sad
that privacy is perceived as an impediment. We don’t see it that way. That is
why we went back and forth on the balance point. Balance is an equilibrium, it
is not a tradeoff. We see privacy as about enabling the new and wonderful world
of health information and health technology to move forward in a way that
benefits all of us.


DR. STEINWACHS: I am Don Steinwachs. It is a pleasure to bring you the
Population Health Subcommittee and its activities.

Just to reflect back for a moment, I joined the Committee in 2002, about
eight years ago. At that time, it was striking to me that the Population Health
Committee was overlooking and trying to figure out how to get the information
needed by the public health sector, working closely with NCHS and others.

On the other side were groups in standards, privacy and security who were
dealing with the critical elements, but it sounded like two different
languages. It was HIPAA, it was NHIN and so on. We know we can use this, we
know they are important, but how do they come together.

So the fascinating and really exciting part is that it is coming together.
You can see a day when you are talking about the vision for electronic health
records, for data linkages and for other activities, that indeed they can meet
the meets of both individual health and public health in the kind of NHIN

If you had asked me eight years ago was I certain this was going to happen,
I would say wait a minute, this may be two parallel universes we are looking
in. So it is an exciting time.

To honor the past co-chairs of the Committee. Lisa Iezzoni. I joined when
Vicky Mays was co-chair, and currently myself and Bill Scanlon are the
co-chairs. We are making a transition. Larry Green will be the co-chair with
the transition, and Bill is moving on to another co-chair role. We find that we
have a breadth of interest and more and more, everything we do involves all the
subcommittees working together. So we are sharing those resources and

I don’t need in this group to give you a definition of population health.
But I asked Marjorie, does the Committee have a definition of population
health. She said, we have in the visionary report which I sent you, we have a
description, but we don’t really have per se a definition.

The common elements are the ones that you understand well. That is, it
really is a focus on the level and distribution of health, a focus of
populations at risk and vulnerability like Ed Sondik was talking about, the
kind of focus of public health.

It also is an area where we are looking for being able to develop
information that gives accountability, both in the health care and in the
public health sector.

To follow in the same tradition here of accomplishments, I went back and
looked at four key letters and reports that the Population Health Subcommittee
was involved in over the past decade.

The first one was on classifying reporting functional status. As you know,
the Committee for a long time has talked about the need for capturing
functional status, health status, to complement the information we have on
mortality and what we have on morbidity. So recommendations were made that
identified the ICF, International Classification of Functional Disability and
Health. It was a promising approach. The report very clearly talks about that
you could use a range of different measures, but that this information is
essential if you want to understand the health of the population. And
functional status is highly predictive, as you know, of mortality and bad

We made some progress. That progress is reflected in the consolidated
health informatics initiative. We supported NCHS to endorse the ICF as the
vocabulary, and the ICF is included in the National Library of Medicine’s
unified medical language system.

What is more exciting to me actually are the conversations that talk about
the patient portal in the electronic health record, the opportunity that
physicians and other clinicians engage patients to complete health status
measures. Those will go into the electronic health record that can be reported,
if we have access to public health as well as medical care to health record.
That also provides information that we are going to be able to get through
surveys and not part of many of the activities that go on in health care

Possibly the outstanding report in the past decade, that the Population
Health Subcommittee took the vision for health statistics in the 21st century,
laying out a broad and ambitious vision. Dr. Sondik referred back to this. It
talks about the factors that influence health and makes you think about what
has to be captured in that Nationwide Health Information Network, if it is
going to serv the needs of population health as well as serving the needs of
individual health care services.

The core concepts were defined in this. When I joined the Committee and
until today, we still think of this as a rejuvenation of the thinking of what
the Committee has to do and where it is going. We did an update. Marjorie
helped us, the consultants who had been involved in the original report, to
look at where we were on the recommendations that were made. We found that
eight of the priority recommendations we made progress on since then, which I
think is very gratifying, because sometimes you feel that those reports that
take on a big vision lay off specific recommendations. People embrace the
vision, but you aren’t sure they embrace action that goes with it.

When I joined the Committee, Vicky Mays was leading the effort to look at
the kind of critical questions we have about race ethnicity, primary language,
and the fact that we don’t have the data routinely captured so that we
understand the relationship between those and what happens in the health care
setting, and what happens in the population.

We also brought sharply into focus that when we talk about the OMB standard
of capturing race and ethnicity, we all do it at the minimum level usually, so
that we capture a few categories of race and one of ethnicity. But yet you look
at America today, and to say that you should pool together all of the Pacific
Islanders and everyone from Asia and call it one group doesn’t make a lot of
sense. You take all Hispanics, and no matter whether they came from Spain,
Latin America or Puerto Rico, it is all one group.

So we still have a long ways to go. That report helped us focus that we
need to think about granularity relative to the population we serve and the
population you are interacting with.

So in some cases, in clinical practice you ought to be capturing something
that is much finer than the basic OMB standard. In other cases the OMB standard
may be sufficient. The good news is that the meaningful use criteria as part of
the ARA implementation of electronic health records does include collecting
information on race and ethnicity.

Not to be outdone by the 1986 efforts to link data, we revived data linkage
use in 2007. It only took 20 years. There were parts in between that; I
probably missed that. We said, look at the data we have available. If we could
link some of this together, we say socioeconomic status is a major determinant
of health. We are not sure of all the pathways it plays out, but of the health
of the public. You could go to Social Security, you could go to the Census, you
could go to the IRS and Education Department; we could put together refined
measures of social position in society. You could even look at it changing over
time for people and so on. Why don’t we do it?

So we held a fascinating set of hearings, a workshop, and we brought all
those parties together. We brought within HHS and we brought together IRS, the
Department of Education and the Department of Agriculture and the Census, and
began to understand some of the challenges. Some of them come back to privacy
and security and the laws that underpin this.

What is remarkable to us is that when you talk about government agencies
sharing information, it wasn’t going outside anyplace, but it was taking six
months or more just to get two agencies and their lawyers to agree to share the
data. Then once you had this linked data set, everyone said, that is much more
identifiable. Who is going to hold it, who is going to control it, where is it
going to go.

So we made a series of recommendations, one about trying to facilitate that
process, the other about data centers and access. Data centers have been the
way to get at linked data. The good news is, they are expanding, and there is
more hope for greater expansion.

The challenges for the next decade provide us with as I said before
unprecedented opportunities. You see a convergence. We talk about the data
sources that we need and the ability through IT to capture those, link those,
and make them more broadly available and maintain security, privacy.

I am going to hit on only one point here, because I am looking at the
clock. You do realize that the new Chair of NCVHS follows me, and I will soon
be cutting into her time. So I am going to work faster.

The bottom point I want to pick up on is, build a public health information
infrastructure. We have a huge infusion of funds coming into the electronic
health record and to building some key parts of the NHIN. It is less clear how
we are going to strengthen how we are going to strengthen and make sure that
the public health sector has the benefit and can link in and can utilize and
come in to the 21st century.

We know that within this country there is a lot of diversity. There are a
lot of needs, but we don’t always have the data to the decision makers that
need it. So when you think about what we have at the local level, many of these
challenges we can talk about nationally. We cannot really talk about them well
in the community, maybe a little bit better in the state, but not always, and I
will come back to that.

We see the need to extend the health information standard, health
statistics, to the local level, where lots of key decisions are made. You can
begin to imagine what a health information exchange could be linked into the
public health sector, with underpinnings of trying to estimate denominators
underneath that. You can begin to talk about, maybe a local health officer
might actually have some pretty concrete information about what is going on in
the community, and know how biased it is or unbiased, because he who is
engaging the system and who isn’t in terms of their characteristics, not so
much the individuals.

This requires data linkage. This opens up opportunities for identifying
at-risk groups, and it provides opportunities also to evaluate effectiveness of
initiatives that are going on in communities, which is where much of the action

We see ourselves also looking at opportunities when you think of linkage of
EHRs with electronic health record surveys and administrative data, and
meaningful use has become a very important policy instrument and seeing that
being advanced. We are talking about developing capacity within EHRs to have
information that could meet some standards, is codable. You can pull it out,
you can think about being able to link it. There are lots of other issues
entailed in that, because we need to know much about the quality of the data
and things that we have asked for many years about the paper record, are even
more true also here.

So when you think about EHR as collecting standardized data, we know now
with the individual vendors, it is not exactly something you can rely upon. But
meaningful use is a push into the electronic health record age,
interoperability. We are moving in a time and moving quickly, it seems to me,
where there is a real opportunity to think those problems will be minimized,
even though they will still persist.

We talk about here three broad areas as future agendas. I have touched on
them already. One is trying to move information from just the national level
where we know a lot down to the local and state level. Through health
information exchanges, through EHRs, through linking surveys that are done
locally into that information through vital records and vital statistics, we
think there is a real window of opportunity that we need to look at and

We think data linkages are key to this, but yet still problematic. So it is
an area that is going to still be on the agenda of years to come. But yet it
has the real potential of realizing the richness of everything we gather.

The Health Reform Act opens up opportunities. The Committee will be looking
at how to make the best use of those. But in using information, we recognize
there is a very important research component, and many times underfunded, the
research capacity that the National Center for Health Statistics has and other
groups who are looking at the quality of data, who are looking at measurement
issues and so on, is very limited. It needs to be expanded if we are going to
make full use of the information that we have there.

We also think that a major role in population health is looking at the
impact of health reform on variations in health care, on disparities in health
care. We hope health reform is one way in which we will close some of those.

Thank you very much.

DR. CARR: I have to say what an honor it is to be in front of this very
esteemed group. I thank all of you for the work that you have done that has
brought us here, and I look forward to your guidance in the work that lies

I wanted to acknowledge that Bob Hungate is here, one of the former chairs.
Bob, would you stand up? The succession of chairs and co-chairs of the Quality
Subcommittee or the work group as it was formerly called, you can see here.

What I want to do is start with the first document that I saw when I came
on the Quality Subcommittee. I wanted to use it as an illustration of how the
Committee is always thinking ahead to the next thing.

In 2004, Bob was the chair of the Quality Work Group. He brought forward a
document with 23 candidate recommendations. I was new, I thought that was a
lot, we all thought that was a lot, because it was. Yet, I have gone back to
that document many times, and I use it here today to illustrate the forward
thinking of the NCVHS.

This document as I look at it today was about creating data elements for
assessing health and health quality. There are four categories. The first one
is assessing health care and health outcomes. I am really competitive, so I am
into stars and scorecards and so on, so here I am again with my scorecard.

Looking back, at that time we said in claims data it would be really great
to have lab values and vital signs and other objective data measurements. I
remember, we had a hearing trying to think where would we put it, what box
would it go in, how would we do it. Yet, when I think back to just a couple of
months ago where we sent a letter to the Secretary about meaningful measure
using electronic health records, one of the key recommendations is that we have
a data set of key elements that we can mix and match for any number of
measures, but that the building blocks begin with things like selected lab
values, vital signs and so on. So there we are.

The next thing was a modifier on present on admission. That came to pass,
and that is transformative, as we look at — as we use administrative data
still today, even in the world of the electronic health record emergence,
administrative data is what all of the public reporting on quality is about,
and present on admission has added a validity to that data that now helps
understand what happens over the course of the patient’s inpatient stay.

Also noted at the time was the importance of having the operating
physician. Then moving on, there was talk about getting date and time of
admission and procedures and start and end dates of care episodes and service.
Yet that is exactly a theme that has emerged as we think about episodes of
care, a condition that may have many admissions or many outpatient visits, or
even as we think about our accountable care organizations, our care within
that. So I think that theme was very much right on at that time.

Functional status we have heard a bit about already. We had the report out
of the Committee in 2001 and ICF adopted as a standard. But in the PPACA 2010,
there is a requirement for functional status reporting, so there we are.

There were some other things that we have not seen as much traction on, but
I am going to focus today on the ones that we have.

The next topic was building data infrastructure, ICD-10. It gets two stars
because it is almost there, in June of 2013. Mapping procedure codes across
settings gets back to the important concept today of episodes of care. EHRs
should have decision support, uniform data standards, import-export of core
elements for data coordination. Just talk to anybody at ONC, that is what they

The national provider identifier is up and running. We also had a number of
letters in 2007 about that. I am going to decline from comment on the national
patient identifier, you can draw your own conclusions.

The third area, balancing quality and privacy, again a theme that we have
heard about today, being able to link data to improve quality while protecting

There are a couple of things to talk about there. First, as Don mentioned,
the letter in 2007 about the power of linked data. In 2008 — I should ask
Simon to stand up on this, and Harry and many of us — we had about ten
hearings or something in two months. It just was nonstop, and weekly phone
calls. We ere asked by ONC to take on this issue of, how as these data sources
emerge, how do we — it was called secondary use. We said, we are not going to
use that term, we are going to say uses of health data, because it is not just
secondary. We built on work that came out of ANYA. It was a nice — we attended
the hearings and ANYA presented to NCVHS. We came out with recommendations,
many of which were included in the HITECH Act.

In 2009 we reflected once again upon the work that we had done in such a
short amount of time on enhancing protections for use of data. We came up with
a concept of simplifying it to a primer, here are the things we need to think
about in protecting data. It actually had two sides to it. A big piece of it
was privacy and protection of privacy, but just as important is the proper use
of the data, the integrity of the data, the completeness of the data, and
understanding the uses of the data.

Then finally, I had to add, because this is a just-in-time technology, but
you can add things the morning of your presentation. We had a terrific
presentation this morning about the Community Health Data Initiative. We had
also held a hearing about Health 2.0 and all these new technologies.

Today we saw in action the kinds of remarkable information that can come
out of that linkage. So again there is the balance and the tension. You heard
the tension, observing it as each speaker has their emphasis, but it is what
makes NCVHS so rich. We have strong representation of the whole spectrum of
considerations, and we have a great process to our recommendations.

The third area is reducing outcome disparities, modify mechanisms for
reporting race and ethnicity, investigate how to best capture race and
ethnicity, et cetera. So in 2005 as you just heard, we had the report that
Vicky Mays had authored. In 2010 the Executive Committee were the first group
to hold hearings on meaningful use criteria. Included in the draft that is now
under consideration is information on race ethnicity, primary language and
disability status as part of meaningful use. So that was the fourth half.

So that is the first half, the building blocks for quality. As I look back
on what we have done in the last few years, it is about taking those data
elements and using them to assess quality of health and health care and

Here we have had a number of hearings, reports and letters. I won’t go
through all of them, but on performance meaningful measure and quality, merging
administrative and clinical electronic data, quality measurement and public
reporting, and then also thinking about the medical home, new model of care and
how we measure that and what are the things we should be measuring.

And as I said, meaningful use; we generated two reports based on those
hearings back in April of ’09, another marathon. Then just this last year we
have taken on meaningful measurement and made some recommendations to the
Secretary on that.

Now a couple of thoughts and challenges for the next decade. I will start
with the recommendations that came out of our letter to the Secretary on
meaningful measure. It is very much aligned with the 2005 report from the IOM
on performance measurement. We need a national coordination for measuring and
monitoring health status, quality effectiveness and efficiency of health
service provision, health service access and utilization.

I think we had a terrific hearing with wonderful accomplished presenters
who had done a lot of things in their particular area. Each one was a one-off.
Everybody was approaching it in a different way. While great, it undermined the
promise of getting a synchronized effort to tell one’s story. So the take-home
from that hearing was not what we heard, but what we didn’t hear.

The second recommendation was optimizing the opportunity to capture
relevant individual and population health information in the electronic health
record. Here again, we were l looking at the idea of the building blocks, to
put now today what are the key elements that we know we are going to need. We
may not know the measures, we may not know what we want to measure, but if we
have certain elements that are there, they will be there for us to go back and
draw from.

Then the third was strategic leveraging of the new sorts of health data.
You have heard about that from all of our speakers today.

The second challenge for the next decade is harnessing the potential for
improvement of health and health care with the dramatic expansion of new data
elements and measurement. We again heard about that yesterday from ONC, what
they are calling element three. In other words, we have data and we can
transmit it, now what do we do.

I think a key thing there is, where is the leadership and the expertise in
this data aggregation and analysis to address relevant clinical issues in
health and health care. So while at the local level, electronic health records
and health information technology is improving care delivery by its speed and
efficiency and availability, we are focused also on the larger story, the kinds
of stories that are beginning to emerge when you are looking at a large data
set and recognize a pattern that was not previously appreciated. I think that
has huge importance for health.

Then second is developing methods to acquire outcomes data directly from
individuals for efficient ongoing surveillance of population health status.

That ties with our final challenge, which is the measurement of individuals
as the center. As a physician I have been accused many times of being physician
centric, and I am getting better. But it is not about the physicians, it is
about the individuals, the person, as we talked about yesterday, the
individuals and their families or their caregivers. So having individuals play
an active role in their health information, through their personal health
records and tethered EHRs with relevant clinical information and decision

Finally, outcomes assessment, reflecting the voice of individuals,
including functional status as a measure of outcome, and expansion. We have
learned a lot from the HCAPS data. Now every discharged patient is asked, did
your doctor communicate, did you understand, did you understand your nurse, did
you understand your discharge instruction. It moves you out of the physician
centric, clinician central model, recognizing if you did a great job but the
patient says, I didn’t understand anything, we failed. So the patient’s voice
has become a very powerful and critical component to our understanding of our
care delivery. So, moving beyond the satisfaction, but the care experience and
the meeting of the patient’s expectations of the outcomes of their care.

With that I will stop. Thank you for your attention.

MR. REYNOLDS: The exciting part about the presentations is everyone that
gave the subcommittee presentations will be ongoing with the Committee. So they
took the assignment, presented the assignment, and they are going to do the
assignment. Justine will probably grade them with stars after they are done and
have the program going on just like the quality stuff. So it shouldn’t be any
problem at all.

Before we take a break, I know some more of the staff that has supported us
have come in. So those who weren’t here when I first introduced the staff,
please stand up.

Another person I would like to mention is Jeff Blair. Jeff has been with
the Committee for 14 calendar years. We had a celebration of Jeff’s career last
night on NCVHS. We had one term: Be like Jeff. So if you know him and you be
like Jeff, you have got it covered. You are going to do the right things.

Another person I would like to mention is Jim Scanlon. All of us that have
been involved in NCVHS didn’t really understand HHS well, but Jim was always
the one that quietly, very quietly in many cases, and if he didn’t say it at
all you knew you were really messing it up, Jim is very quiet, but does an
awful lot with that quiet demeanor and is a real sage for us to work with.

I would like to mention somebody else, Dr. Rob Kolodner. Please stand up,
Rob. Most of you know, Rob was the National Coordinator for awhile. A lot of
times, you collaborate closely with people, and a lot of times you collaborate
with good friends. I think that is the thing that we all can say that have been
involved with the Committee, that Rob was truly a friend of the Committee,
truly made a major difference with that, and got a momentum going that has
allowed us to continue that with David Blumenthal. So Rob, I salute you, taking
on a new job, and being such a good partner with us. Thank you.

I will introduce Marjorie after the break, and then we will turn it over to
her to say a few things about the video. We will be back at three o’clock.

(Brief recess.)

Agenda Item: Discussion

MR. REYNOLDS: What we are going to spend the next 20 minutes doing is,
since you heard from the Committee chairs on what we are thinking about, open
it up for a short 20-minute discussion. Then we are going to have a video. Then
we are going to hear from the past chairs.

So with that, I will open the floor for anybody that has any comments,
questions. Are there any questions or any discussions that anybody had based on
what we talked about? Before I do that, I would like to introduce John Lunt,
another good friend of the Committee, another person that worked very closely
with us at the Office of the National Coordinator. I am going to keep an eye on
the door, as people come in that have been important to us also as a Committee.
John, welcome, good to see you. Thank you for all the help you have been to
this Committee.

Any questions or comments or anything else?

MR. PAYNE: My name is Rob Payne. I am with the District Medicaid agency,
and working with an HIE project, the patient data hub through the Medicaid
agency here.

I have a question. I think I heard one of the speakers say they will not
encourage standards for interoperability because that would constrain the
marketplace coming up. I just wanted them to speak a little bit more to that.
Everybody that is looking in the field is looking for standards for
interoperability. I just wanted to get a little more insight into that
particular recommendation.

DR. WARREN: It is a good thing you asked the question, because it is not
what I intended. What I meant to say at the very end is that we have certain
guidelines for developing standards. Standards should not constrain technology,
processes or things of that nature, or the data themselves or for the
transmission of that data.

So, not that we don’t want to encourage standards for interoperability,
because we will never have interoperability without standards. I don’t want to
create a standard that says I have to have a PDA to do this. I want to leave it
open to whatever new device is out for input, can then use the standard. Does
that help?

DR. SONDIK: Judith, you said something that struck me as very interesting,
but it is all interesting. You said something to the effect that privacy is not
a barrier, I think you said. Didn’t you say that?

DR. WARREN: I think Leslie said that.

DR. SONDIK: Oh, Leslie said that? You said privacy was not a barrier. I
thought that was kind of interesting, because for me it is a glass half full,
glass half empty, I suppose. I am looking at it from the standpoint that it
must be maintained. You can turn that around and say that it is being
maintained, but I say it must be maintained to a certain degree. That is the
thing that we don’t talk about, is the risk, the level of risk associated with

If I said it has to — I’ll give some probability, one in 10,000, I have no
idea what that means, but you could turn that around and say that 9,999 out of
10,000 times — again, I am being imprecise — privacy will be maintained. Make
it a positive statement. Is that the kind of thing you were getting at?

DR. FRANCIS: I tried to use should not be seen as a barrier, as a way to
think about these issues. I think there is a standard historical view of public
health and bioethics. Public health as being about utilitarian values of the
good of the whole, and autonomy as being about individual choice, are
ineluctably in conflict.

I just think that is way too simplistic a view. Public health in fact
enhances individual potential for choice. If you make choices that are well
informed, you understand — just to take infectious disease as an example, if
all I worry about is that my privacy will be violated, I forget that there are
all these vectors out there that would be putting me at risk, just as I could
be putting someone else at risk.

So I think that the dichotomist conflict way of viewing it is deeply
problematic. What we have to be doing here — and I’m not going to say the
answers are easy, at all, but what we have to be doing here is exploring
synergies and reaching new equilibria, up at a level where you don’t just see
it as a one in 10,000, but you are trying to explore options where you get
different benefits and different risks.

MR. HOUSTON: To expand on what Leslie said, there is this idea of the
public trust, and if the public doesn’t have trust that adequate privacy
exists, then that is a barrier. Obviously the opposite is that if there is
public trust, then people will be much more open to these new ideas about how
we should be sharing information and using information for their benefit.

I remember a study that was done some time ago, a research study in Canada.
The question was posed to people, do you want to have the right to approve that
your information will be used for research. The answer came back and almost
everybody said yes, I want to be able to approve the use of my information for
research, even on a deidentified basis.

Then the next question that was asked was, if you are asked whether you
want your data to be used for research, would you let it be used for research,
and almost everybody said yes. So they just wanted to be asked.

I think it is the same argument. People want to feel that they have a
trusted standard and that adequate protections are in place. But once they feel
that way, I think most people would say, all these new opportunities and uses
and data flows are acceptable.

DR. CARR: Another thing that I am struck by when Leslie was speaking about
the analogy about the inhalers by the river. If somebody were looking for
someone who was a teenager, they would just go on Facebook and find them. It
says to me how the world is changing.

In isolation all that you said is true, but it is a lot of work to do that.
The world has changed so much that there is so much information available. So
it is not an either-or, but it is being in an environment that is changing
every day.

DR. FRANCIS: One of the crucial roles of this Committee is education about
how things are changing. I will just give you — there is a lot of talk about
how the Facebook generation doesn’t care as much about privacy. There was a
recent data driven study that was reported in the New York Times just a
couple of weeks ago. I had picked it upon SSRN, which is the Social Science
Research Network. I can give you the cite if anybody wants to e-mail me.

The New York Times article picked up on the report of the study as
saying that the Facebook generation really does care about privacy, more than
people thought they did. Their privacy preferences look a lot more like their
elders’ privacy preferences, or perhaps the reverse, their elders’ privacy
preferences look more like theirs.

What the New York Times didn’t pick up in reporting on that study
was that both older adults and younger adults were grievously misinformed about
what it means to have a privacy policy. At a very high percentage, they thought
that if an entity has a privacy policy, that means they have to protect your
privacy, not that they have to tell you what they are going to do, but they
have to protect your privacy, and that they can sue you if they fail to. That
is in the larger study.

What troubled me about the Times not picking up on that in their
report is, that is a perfect example of how the public could have been educated
that this is not about whether people care about privacy or not, but they are
woefully ill-informed about what the risk are and how to protect themselves.

MR. REYNOLDS: Any other questions? There will be more time when the former
chairs get involved. As they comment, other people can jump in. You guys are
welcome to make any more comment about what each of you said or anything going
forward before we step down.

We have got a question.

DR. FITZMAURICE: This is a question that is focused on the Standards
Committee and focused on the Quality Subcommittee. As we see what is happening
with quality measures, quality measures are being looked at for their validity,
for the quality of the data coming into them, and do they mean what they
purport to measure.

On the other hand, we find that for meaningful use, some of the performance
measures are quality measures. So there was an emphasis for getting the
standards right, getting the data elements right, getting the elements so that
they can be rolled up in the electronic health record and into quality

Do you see in the future a joint effort on quality between the Quality
Subcommittee and the Standards Committee to try to help address this complex

DR. CARR: Yes.


DR. SONDIK: I think this is a population health question, but I’m not sure.
You heard this morning about the Community Health Data Initiative, and I
mentioned that as well. With the genie out of the bottle in terms of all this
data now getting out and made more and more accessible and usable, and
applications of it being developed, what are your thoughts about the evaluation
side of this? What about responsibility for how good the applications are,
whether they are putting data together that simply don’t belong together for
very good reasons, or they are drawing inferences from analyses that are done
that have no basis when you look at it from a causal point of view, or at the
literature elsewhere says this is not appropriate, whatever it might be.

These applications appear as if it is going to grow exponentially. Those
involved seeing it taking off like the applications on the iPhone. I don’t know
if it will be that, but it is quite interesting that with a little bit of
prodding, there were immediately over a period of less than three months 12
applications were developed. Now there is a competition on, and I don’t know
how many people from the tech community are applying all of this.

So that is my thought. Given that the Committee has looked ahead over its
history, what are your thoughts about future evaluation of these applications
and responsibilities that those of us in the federal sector have?

DR. STEINWACHS: I’ll start, and then I’ll let Bill take over. It always
seems to me, once you turn something out into the public sector, and the public
pay for the data. You are presenting the data in ways where it is protected, in
the sense of confidentiality and the privacy of individuals.

Then it is very hard to say that we are going to do things that protect the
public from the private applications, unless we can see clearly that there is
some harm, much like any other regulatory activity. That kind of evaluation I
would see less likely, but you might have some instances where things are done,
applications are done and there is harm, that would trigger that kind of role
that says, wait a minute, we didn’t really think about the fact that there were
certain things that you could do with the data, and you present it. You might
seduce these kids out to the river bank and get caught by whoever.

The other side that I think is very intriguing says, how would you evaluate
the use and what difference it makes. Sometimes you think in the American
marketing sense that you just count the numbers. So many clicks on this, or ten
million people have downloaded this app, and you say that is success.

But it would be fascinating to think about how would you get at how it was
actually used, much like you say clinically, did the information make a
difference in your diagnosis, in your treatment, in your management, did it
make a difference or was it just a game, you were getting things that were

I would love to see the Populations Subcommittee talk about how might you
do that. When you think of things like the health interview survey and
other things, there are lots of chances to touch the public. So it would be
interesting to think about what kinds of questions could you ask. Or the other
way around, could you tag something onto some of these apps, so when the app
goes out, after the fifth time you use it, a little questionnaire comes up and
asks you to answer three questions, and if you answer three questions, it goes
back to NCHS, so you begin to get some responses about that.

I would think that would be exciting to know how was it used, not just how
we think it is being used.

The other part of it is, you talk to friends and they say which apps do you
use the most. For some of them it is where the best restaurant is that is
within walking distance of where I stand and others.

So you can see it fits into the lifestyle issues, so it probably will play
into key decisions people make, whether it is the small decision of where I eat
dinner tonight or a real estate decision that says, now I can map potential
apartments onto crime rates in the area, and I can map it onto some other
things. Here is my tradeoff. I am willing to pay a little more rent just to
make sure I am not that close to something. So it is exciting to think about
that it will likely be used in ways that will influence what people do.

MR. SCANLON: It is almost a question that we can spend days talking about.
It is really an issue of risks and benefits. Not to rain on this initiative too
much, but in some ways it is only a step forward from where we have been in the
past. We have published data in the past, and people could go and access
printed information and misuse it. Now we have digitized it, and with the
phenomenon of the Internet, it is much more accessible to people, and many more
people can think about misusing it. But also many more people can maybe benefit
from it.

So the question in my mind is, first we have to make sure we use the same
or even stronger criteria in terms of protecting confidentiality that we were
using to publish data in printed form, making sure the data we let out there
are appropriate from that perspective.

Then there is this question of what can we do beyond that. I’m not sure
what it is. I can’t imagine us feeling tolerant of a government that filters
the data, saying this is going to be misused, and therefore we can’t allow it
to be published. I also can’t think that we are going to be too tolerant of a
government that says, we are going to invest in truth squads, and when we hear
that applications are misusing data, we are going to publish the right
perspective on things.

I think this is one of those areas where there are going to be very
positive benefits, but there is also going to be some harm. That is the
unfortunate world we are living in right now. We have had this information
explosion in all kinds of dimensions. I am a fan of Google, but I know when I
Google stuff, that is not all peer reviewed literature. I can’t necessarily
rely on things that I am seeing.

This is just another example, that if I use one of these apps, I am at
risk. I have to have my own criteria for deciding the value and the validity of
what I am seeing.

DR. CARR: I think it goes back to what Leslie was saying before in terms of
Facebook and transparency and understanding what you had.

We had an interesting discussion with Marc Overhage yesterday, talking
about Indiana Health Exchange, saying that there is a dramatic increase in
people who don’t have a cough. What that means is, it used to be, if you were
taking a history and someone had an abnormal chest X-ray, you would ask them if
they had a cough. But the incentive of ENM codes has to do with how many organ
systems did you evaluate. So if you evaluate a system and say negative, that is
a part of the workup that you did, work done and reimbursed. But it is not
directed by your differential diagnosis.

So a person could say there has been a dramatic decrease in cough or an
increase in not having cough. It just points to the assumptions that go into
the data that may or may not be visible.

It gets back to another one of our major challenges. Now that these data
are out there and these techniques are there, we have this responsibility to
create an educated workforce, leaders, in using data, and it is not quite the
same as it was.

The other thing that Jim said yesterday is that these data are adjunctive,
they don’t supplant the ones with numerators and denominators. I just think
that we have to be very serious about who are the thought leaders and where is
the locus of that leadership, meaning in NCHS, that we develop expertise and
bring together the Google people and the data people and the clinical people to
say what are the right questions and what is the right way to do it, and kick
the tires and say, could this be true, is there anything that says it couldn’t

MR. REYNOLDS: Thank you, everybody, if you will go back to your regular
seats, please.

I have the opportunity now to — I feel inadequate doing it, but I have the
opportunity now to introduce a lady that all of you that have been anywhere
near the Committee are familiar with.

We touted Jeff last night for being here 14 years. You can probably almost
double it for the person that I am going to introduce. Usually when you
introduce somebody you give their title. I think that would be a misnomer in
this case. How many of you know Marjorie Greenberg as the Welcome Wagon? Any of
us that have been a part of it. How many of you know her as the teacher? How
many of you know her as a sage? You question it sometimes, I know. Sergeant at
arms? Master of the budget? The conscience of the Committee. A friend, a
legend, a positive legend, one heck of a professional, and most recently, best
in class grandmother.

Marjorie, no other way to explain it. Please come join us.

MS. GREENBERG: And Harry is right behind as best in class grandfather.

I guess everyone knows that I believe that history matters, so I am
delighted that we have this opportunity to bring everyone together to celebrate
the 60th anniversary of the Committee, in the same year that we are celebrating
the 50th anniversary of the organization where I have made most of my career,
the National Center for Health Statistics.

I want to add my welcome to all of you. Every one of you is a friend, so if
you didn’t raise your hand when that word came out, I’ll raise it for you.

I was thinking as the folks were sitting up here, my husband who raised his
hand on sergeant at arms, he started raising his hand. We got a bit annoyed
over the election season of CNN always referring to their panel as the best
people in Washington or the smartest people in the news. But these are the best
and the brightest from my point of view. Over the years it has been — double
Jeff’s term, I think it is 28 years that I have worked with the Committee, not
the whole time as Executive Secretary. I also said on Facebook this week, or
was it since 1949 that I started working with the Committee? It seems that way

But it is a great joy to me to see all of you here. I do want to thank the
National Academies of Science and the Committee on National Statistics, who
helped us celebrate ten years ago, and are helping us again. This is a
partnership that we value and hope to continue.

Is Connie Citro in the room? Connie is invaluable. We met her at a Data
Council meeting, and she may have been sorry she went to that meeting, but we
haven’t let her go ever since. She was very helpful from the CNSTAT in helping
us prepare for this.

People have recognized Jim Scanlon. He was my partner in crime, we are
joined at the hip. When HIPAA came along, I was about to become the Executive
Secretary, and he became the Executive Staff Director. This could be a
competitive or contentious relationship; it has never been for one minute. We
both have benefitted so much from working together. Of course, ASPE has been a
tremendous support for the Committee, along with the National Center for Health
Statistics. I certainly want to thank Ed Sondik for his longstanding support of
the Committee. Ed and his predecessors, too. Manny Finelieb, Dorothy Rice, they
all were valued by the Committee, and you can see why.

The NCVHS team was mentioned, but I have to mention them again. I have
these visions, some of which may be hallucinations almost. Either they tell me
I am off base, or if they can go along with the vision, they make it happen. I
just get to stand up here, but none of this would have happened without the

Our team leader is Katherine Jones. It is what I refer to as the care and
feeding of the Committee, it is non-trivial. Just getting people in the right
place at the right time. She is ably assisted by someone who just walked in the
door here, Jeanine. If it doesn’t look like it is a lot of work and it looks
like it is easy, then we have accomplished our goal. I know sometimes you get
to the hotel and you don’t have your name on the roster or whatever, but these
things are the exception, fortunately, and you all have always been good
sports. But I think working with an advisory committee is a privilege and it is
a challenge and it is a lot of work, and that work gets done by people who
often don’t get recognized.

Now, Debbie Jackson. Some of you remember Lynette Rocke, who was my
sidekick with the Committee during some of your tenures. Unfortunately she just
recently lost her father and she is out in Hawaii with her family, but she
sends her best to all of you.

When Lynette left, I was heartbroken, because I couldn’t imagine going on
without Lynette, and by some miracle we found Debbie. Debbie is just the most
creative, warm, sensible, fun person. She is in many ways the heart of the
Committee. She comes up with all sorts of great ideas for us.

Agenda Item: Charlottesville Video: Colloquium of
Current and Former NCVHS Chairs

As you will see, I have the privilege to introduce the video. I had this
idea of convening the former chairs, not just here at the Symposium which we
did ten years ago, but in a pre-event. I particularly wanted to do it in
Charlottesville, Virginia, because of my great respect and admiration for Dr.
Carl White, who was a mentor, whether you know it or not, to everybody in the
room and to people throughout the field of population and public health.

When I came up with this idea, I did have some skeptical looks from my
staff, these are busy people, they have gone off the Committee, they have moved
on, why would they even want to come. But they went along with me. We invited
all the former chairs that we had contact with, going back to 1986. They did
all come, and we had an amazing two days.

I want to thank Larry Green and Bob Phillips from the Robert Graham Center,
who associated us with the Department of Family Medicine at the University of
Virginia, which helped organize all of this. We had Susan Canaan, who is our
writer, who does so many of those reports out there and so many of the things
that the Committee does have been greatly written or facilitated by Susan. How
many committees do you know that have the same principal writer, though we have
other people like Margaret A., who has been wonderful, and others who have come
forward, but to have the same writer for 20 years is pretty phenomenal.

Susan did oral histories with each of the former chairs, and then we had a
roundtable discussion. All of this was videotaped. I think there will be
snippets from the oral history for the reception. If you all of a sudden think
you are talking to Don Dettmer, and then you hear his voice across the room, he
is not projecting his voice over there, but that is Don on video.

But then we have the challenge also — that was a challenge enough of these
clips, but of taking this two and a half hours of rich discussion in
Charlottesville in our roundtable, and getting it down to about 20 minutes. I
can tell you that I didn’t even see it until it was 25 minutes. A month or so
ago, when Catherine and Debby, who had been meeting with the video editor then
for several months, asked me to come into a conference room, brought out
popcorn and candy bars and other things, and turned on the switch. I just
smiled through the whole thing.

So they really did all the work on it, and personally I think it is
wonderful, and I hope you enjoy it. I will say that we will be posting it on
the NCVHS website. We have given individual copies for Christmastime or
something, when things are getting slow you can slip it into the DVD player or
something, when the family is all around and they want to know, what actually
have you been doing in the last 20 years. But I hope you do enjoy it.

We are going to now show it to you. I think what you are going to find is
really amazing is that in a sense, what is going on in this videotape relates
perfectly to what you heard before the break. All that was developed after
then, and the Committee members have not seen this videotape either. So it is
very aligned, the themes and the thoughts.

Harry and I were there, and Debby and Catherine, we took it all in, and Jim
of course was there also, so we took it all in. But I think you will see that
the continuity is definitely there.

So can we turn on the video? Then afterwards we will have a little
opportunity to call on the chairs and ask anyone else who wants to comment on
it. I’m going back to my chair, because I love watching it.

(Whereupon, a video was shown.)

Agenda Item: Remarks by Former Chairs and

MS. GREENBERG: While this is going, I mentioned that we have the team. I
introduced Catherine Jones as our team leader, but I should have introduced the
members of the team actually. It keeps cascading now. I am the Executive
Secretary, but then I don’t really do any work. Then you have got the team
leader, she does some work, but the real people who really do the work, I would
like to recognize them. Harietta Squire, Cynthia, and then we have other people
in the room who are also members of the NCVHS team, Michelle Williamson, Hettie
Cahn, Misty Jamison, others. They don’t usually get introduced to music, but
why not? Certainly they make sure I march to the right tune.

I think you will agree with me that this was very consistent with
everything you heard before the break. We had some words of wisdom on screen,
but now I would like to introduce each of the chairs who are here, and just ask
them to make any comments about either the video or the experience in
Charlottesville or your experience on the Committee, or anything you heard
today or whatever. Once you are the chair, you have a permanent place in our
celebrations, that is for sure, not to mention in our plans.

So going backwards to 1986, when Ron Blankenbaker had come on the Committee
prior to that, he was the state health officer in Indiana. It was again from
the point of view of a customer, or being able to make a connection with the
Secretary, we had a special card with Ron, because when he was a health officer
in Indiana, the Governor was Governor Bowan, who then became the Secretary of
HHS. So that was nice.

DR. BLANKENBAKER: So now you know how I became chair.

MS. GREENBERG: That is probably how you got appointed to the Committee, but
I think you became the chair, although he didn’t argue with us, because of your
distinguished service on the Committee. You must have served under Bob Barnes.

So Ron, would you stand up, and I will give you the floor if you want to
make any comments. You already made — it may have been short, but it may have
been the most important comment in the whole video, about, we could reform the
health care system and we wouldn’t be any healthier. So that is what we want to
avoid. We want to make sure we are tracking with our data.

DR. BLANENBAKER: You mentioned short. I have had short jokes all my life,
but I have to tell you that as I have listened here today, several things come
to mind, but one of them reminds me of my Hippocratic Oath, foremost, do no

At the 50th celebration, you probably don’t remember this, but I was asked
to make some comments. I came up to the podium, and here was this little step
stool down here. I looked at it and I said, I don’t need that. I didn’t realize
that following me was Donna Shalala, who was the Secretary, and she did use it.
So it is a little bit embarrassing working in that way.

When I became chairman, a number of us as committee members were thinking
about the importance of the Committee and whether it made a difference. What we
said to ourselves was, these are busy people and they have got other things to
do other than come to Washington and talk about things and leave and have
nothing change. So we spent a lot of time trying to make a difference.

I have to tell you, after having attended the Colloquium, which sounds very
impressive, there was a Colloquium, today it is clear that the Committee does
make a huge difference. I am especially impressed with the fact that you are
willing to discuss the issue of misuse of data. I think we do have a
responsibility to do no harm. As we are creating data, we ought at least try to
give thought to how it might be used or misused.

There was a lot of discussion today, and I was glad to see that. But I
think the most important thing from my standpoint is, back when we were
committee members, we were thinking, does it make a difference. There is no
question in my mind today, it does make a difference.


MS. GREENBERG: Thank you, Ron. It helped to get some things in legislation,
so it made it harder for the HIPAA and the MMA and some more things. But I
think it raises all ships.

I think the other things that the Committee has done that weren’t in
legislation perhaps get more attention now than it did in the days when we
didn’t have as much focus on health information and health IT.

I have this vivid memory of being in July Miller Jones’ kitchen in West
Virginia after an Executive Subcommittee retreat. She was probably saying
goodbye to some people who were leaving, and Ron said to me, I am going off the
Committee, what do you think about Judy as the next chair? I said, I think that
is a great idea, and of course Judy did follow. Obviously we didn’t make the
appointment, but other people thought it was a great idea too.

So Judy followed. You went off the Committee in ’91, I think, and then Judy
followed as the next chair. Judy is well known in Washington, is the head of
the National Health Policy Forum, so brought an important policy perspective to
the Committee in the ’90s when we were looking at health reform yet again.

So Judy, we also value you very much in your continued role in the health
community and health information community. Would you like to say a few words?

DR. MILLER: This is a family affair in many ways. It is a blending of folks
who have passions all related to data and information and how do you use it.
When I came on board the Committee, it was, let’s be honest, fairly moribund.
It was having trouble. It was a difficult time in the policy arena. It was a
difficult time in the political arena, and there were a lot of machinations
going on even within the Department.

So looking back and seeing what has happened since is a real pleasure, a
real pleasure. So much has been accomplished. But there was talk at that time
of killing the Committee. I think it would have been a tremendous loss.

I started out my career at IBM. I was in the Information Systems Division
for Health and Education. Larry Reid was our customer, the problem oriented
medical record. I was a 20-something year old kid, listening to this guy
lecture that every doctor would do better care if they had a problem oriented
medical record and would put it on a computer and so on. Not many doctors would
think the way he did, dissect problems the way he did, use information the way
he did. That was a hard sell for us, to sell systems based on that.

But I then went into policy work on the Hill and then for HHS. Throughout
it is kind of ironic, moving from that experience. Maggie Mahoney introduced me
to Paul Dunstan and Carl White, who said that you want to improve care in this
country and services in this country, you need to know a whole lot more than
what the doctor orders and does to them. You need to know how they move
throughout the system. You need to know the influences on their life, and all
of that is coming together as we are talking about these systems.

I wouldn’t be true to Judy in my image if I didn’t leave a challenge. I
think this is a very exciting time, but I am not naive about what lies ahead.
We have an election coming up. We have a lot of people who are running against
health reform, who are running against a lot of the things we are talking about
here. They are using fear of Big Brother government in the sky, of information
systems, to scare folks.

I think the challenge that this Committee faces and could do a world of
good on is telling people how good it could be if we used our data better. Most
patients hear about data when they go to the doctor and they get a HIPAA form
to sign, and they haven’t got the foggiest idea of what it means. They can’t
even get a good answer from the person who gives it to them. Most doctors
frankly don’t know why the HIPAA form was developed. They don’t know how his
information is going to help them. They hear about how it is going to be used
for economic credentialing and other things. There is so much good to be done.
With the ONC coming into being and all the work that they are doing, I think it
is time for NCVHS to rethink its role. That is almost a regulatory agency, this
is an advisory body. This is an empowering body. This is in some ways a
visioning body. I would love to see you get more empowered, but empower the
public. Empower doctors, empower patients.

I think up until now, the Committee has spoken mostly to the aficionados
and the needs are changing. If we don’t get doctors and patients and the family
caregivers to appreciate how important all this information is, somebody is
going to manipulate the system and put the brakes on. That is where I would
love to see this Committee really do its very best.

So my best wishes to all of you, to all of the staff who brought us so far.
Like I love to say, more to be done.

MS. GREENBERG: Judy did remind us in Charlottesville that while we are
celebrating and patting ourselves on the back figuratively to some degree, or
just enjoying being here, that we have a lot of work left to do. There are
things we haven’t succeeded at.

This education area, I couldn’t agree with you more. It is so important. We
had a hearing on Tuesday, the Privacy Subcommittee, about sensitive health
information. That came up so many times. Some of you guys who were on the
Committee then, we tried to come up with some kind of plan maybe or activity
for public education, and we didn’t quite know how to pull it off. But it is
certainly something that I think we can return to, I couldn’t agree with you

This has a storyline here. After Ron and I started thinking that Judy would
be a good chair, then we were having some hearings and Judy said, I think we
should bring Don Dettmer in, because he has gone a lot of interesting work, and
we would like to hear about what he is doing, doing work with the electronic
health record, then they called it the computer based patient record. He is
doing work internationally.

I think what Judy described before, not that it was a fault with the
Committee, but things were kind of in disarray. The Committee was at risk of
potentially going under. I think Judy was very effective at working with
outside constituencies, and my boss and others worked within the Department to
try to show why it was important that the Committee continue, and the rest is
history, as it were.

So we brought Don in. You testified to the Committee. If you don’t want to
be involved with the Committee, that is your first mistake. Say no, because
before you know it — I can’t tell you the number of people who testified, and
Harry was one of them, who ended up being on the Committee and even chairing
the Committee. If you are a winner, we don’t like to let you get away.

So when HIPAA came in and then it was time for the next generation of
members, Don was brought in as the chair. That was about 1996. Don has a
distinguished career as a surgeon, as a thought leader with the IOM, et cetera,
international experience, but he really brought all that together in this very
important transition period, after HIPAA was passed and so many new things were
expected of the Committee.

So Don, would you like to say a few words?

DR. DETTMER: We all know her well enough, she wouldn’t let me say no. No,
actually it is nice to stand up as I saw this and then also looked at the faces
in this room. I owe so much to so many of you for what you have taught me and
also for the friendship and leadership. I can always tell when I am feeling
nervous about standing up and saying something, I have that feeling. It is
great to feel all that.

I was also involved ten years ago when we had that celebration as well, and
it was just as warm and moving as well.

I want to pick up on a few of the things that were said. A difference is a
difference if it makes a difference, somebody once told me. I think this does
make a difference. I was excited to see where things are headed. I think that
is really great.

One of the things that didn’t make the cut but did make the Colloquium was
quite a bit of discussion — it was echoed, but not fully — on the importance
of relating social determinants of health. I think it is in that whole issue of
reforming, the way we look at what our business is, if you will. I think the
fact that that is well into your thinking in this next cycle is pretty exciting
for me to see, because it was something that we resonated quite a bit about in
the conversation in Charlottesville.

Also, just to pick up on a couple of other things that came up in the
comments. I think the issue of the global standards thing is also timely. I
think that is quite important, and a lot of opportunity there. Of course,
Marjorie with Betsy Humphries and a lot of other people have given great
leadership and continue to do so. I think that is certainly exciting.

I think it may be smart, because the Committee and the staff has had
tremendous productivity in the last few years. That was the other thing you
saw. The question is, can you change some methods to leverage yourself more. Is
there a possibility that you could farm out some work product groups to some
other folks.

Just to make a couple of comments — I sound like I am still chair — but
the point is that perhaps to leverage some of this, focus it on your areas, and
then they could come in and report. I don’t know, just thinking.

My point is, Secretary Sibelius has said that she wants to have her
decisions based on the science and evidence. That is a great thing to have the
Secretary say to everybody. That ought to mean some resources can fall. I think
it sounds like that is a key audience without question, as John said. The
Secretary absolutely is a key audience. Once we got the attention, boy, things
did start moving, there is no question about that. So I think that is key.

The other thing, I had two other things down, and this is why I want to
talk about this way of getting more work done before I then try to give you
more work. Two other things that I thought were pretty important that were
talked on and Don said a little bit about. That is the issue of the research
agenda, and also to some extent development agenda. There is only so much you
can do, but maybe you can restructure how to do it and pull a few more rabbits
out of the hat.

I think the time is right. There is a cautionary story in this too I want
to add, since you were kind enough to give me the floor; you shouldn’t have
done that. We talk in this country about HIT, but the fact of the matter is,
when most people go to see a health worker or something, they are really
interested in seeing you, they are interested in communication. They are not so
much interested in information. They want to see a record of that
communication, but they really want to make sure they connect with people and

Most of the world outside the U.S. calls this HICT, health information and
communications technology. It really isn’t about the T part. Standing here now
as a reborn informatician, informatics is about the carbon cycle, how do you
use the information. That relates to your education issue.

I think there is an education challenge, too. So I think the research
agenda is an issue, but I think an education agenda is there too. I think it
came up in your comments, Leslie, about what should the public know about this,
as well as others. So it has come up.

One other comment on the research agenda. Now we are moving into health
care it looks like, with this reform, and 35 million more people. What are some
markers that could help us test whether these things are being done and we are
getting more good than bad out of it? Obviously health services at some point
do make some differences clearly.

I think that is the agenda against which I would look at it. I think if you
made the argument, we are embarking on an historic thing here, and we really do
deserve to know on the evaluation side where this is going, has gone and so

Anyway, still a tremendously vital committee, dealing on issues that are
near and dear to a lot of us. So I am delighted that you are coming in, and it
will be a continued wonderful progression. Harry, congratulations on all the
good work that you have done.

At this point, thank you very much.

MS. GREENBERG: Thank you, Don. When people retire from the Committee, we do
give them a letter and a certificate. It always says, from the Secretary, he or
she always says, we hope we will be able to call upon you in the future. You
see we take that very seriously, so we value that.

When Don came on the Committee, John Lumpkin and Simon Cohn, you all came
on at the same time, 1996, since the HIPAA clash. Don decided at that time, by
about 1998, that it didn’t look like the U.S. was going to put any money into
electronic health records. They were putting a lot of money into it over in the
U.K. So he told us that he was moving across the pond. We were really
disappointed to see him leave, but as you see we found ways to keep him

Fortunately, John Lumpkin was right there, ready to pick up the mantle.
John had also been health officer in the state of Illinois, I think maybe the
longest-standing health officer. More recently he is with the Robert Wood
Johnson Foundation. We greatly value your wisdom and your involvement and your
leadership, and we would like to hear from you as well.

DR. LUMPKIN: Thank you, and great appreciation to Harry and to Justine for
carrying on the great tradition.

I actually just had three points to make. The first one starts off with the
conversation today about community health data and new opening sources of data.
It reminded me of my favorite quote from Carl White, which is that we have been
able to amass huge amounts of data untouched by the human mind.

Taking that one a step further to some of the work where we have
demonstrated what can happen when you take data like that and you begin to look
at it. One of the longstanding projects to do that has been the Dartmouth
Health Atlas.

Perhaps the most critical lesson that can be learned, and no one who argues
against the Health Atlas argues against this, that is, that there are regional
variations in the delivery of health care and the outcomes. I think this is my
first point, which is a charge to the Committee. Health care delivery and
population health is not a national issue, it is a local issue. The ability to
effect change at the local level is dependent upon the ability to have data at
the local level.

So if I am operating a local health department and I want to do something
about the smoking in my area and childhood smoking, I can look at the
behavioral risk factors survey. All it will tell me is what was the rate at my
state and maybe what was the rate at counties like me.

So until our data enterprise can get to the point where it can deliver data
to people that are engaged in effecting the change, whether it be at the
population level or at the practice level, we won’t be able to effect
improvements in quality that we need.

I’ll skip the second one.

The third point I have is a future-looking point, another one. I have to
admit, this is the first meeting I have been to in awhile where, when I went
onto Hoot Suite and also checked Twitter, I looked for hash tag NCVHS, there
wasn’t anything. I’m not used to going to meetings where people aren’t
Tweeting, or using some other social media.

There is an incredible revolution that is going on that is going to have an
impact on health information technology. I think it is a two-edged street. One
is that the message of the important work that this Committee is doing needs to
go out, and it needs to go out in an open way in which people can understand
and access that information, and that includes social media. So I would
encourage you to think about that in future meetings.

The second part of this revolution is, one of the perhaps most powerful
pieces of computer software, the most powerful piece of computer software in my
house, is not sitting on my desktop. It is in my son’s room. It is hooked up to
his television, and it is a game console.

I was recently at a meeting where I used the video processor in order to
mimic the flow of cardiac potential waves through the heart, and to demonstrate
how arrhythmias occur, just using from an X Box the image processor. I think
one of the universities here took 19 of them and put them together in play
stations and created a supercomputer. Incredible things going on in the world
of gaming.

One of our major programs that we have is one called Games for Health. This
is where the interface becomes very important. At the University of Vermont,
they have a device for people with cystic fibrosis. They blow into a tube and
it actuates a game. One could imagine someone getting a prescription for a
game. When we think about the interface of how data can flow, that same game
which they use to not only diagnose but also to give them therapy at the same
time, could link to your personal health record, could link to an electronic
health record when they are treating caregivers.

As we begin to think about all the interconnectivity of this world, between
what is going on with games that people play, whether it is with the We Fit or
some other device, and their source of health care, the importance of being
able to enable that data to flow where it is most needed so that decisions can
be made at the right time by the right people is part of the purview of this
Committee. I encourage you to take that up.

MS. GREENBERG: Thank you, John, you never disappoint. I did put on Facebook
about this meeting, but I haven’t Tweeted yet. I may have to rethink that
restriction in my activities.

After a very distinguished service as the chair of the National Committee,
John’s service, we then get to the person who would have been our last former
chair, except we now have yet another former chair, Simon Cohn, who also joined
the Committee in 1996, coming from Kaiser Permanente, and very involved in
national and international standards. John and Simon and then Harry all chaired
the Standards Subcommittee.

I think just from what Ed told you about the history of the Committee —
and I am very impressed that you read it, and Susan Kanaan especially
appreciates that, Ed — but the Committee has been about standards from the
beginning. It has been about standards, it has been about population health, it
has been about all of these things, and it has just come out in different ways.

Was it in 2002 or 2004 that you became the chair, Simon? It is in the
history there. Simon was — other than Jeff who was appointed by the House of
Representatives, I think the first person in my tenure with the Committee who
was appointed for a third term. So in that appointment he became the chair of
the Committee, and he retired a few years ago when Harry took over. But we have
also stayed in touch with Simon, it doesn’t surprise you, and we would like to
hear from you too, Simon.

DR. COHN: I think I am batting cleanup here. First of all, I am really
disappointed. I was looking forward to the title of Immediate Past Chair. I
think I am just going to have to become one of the former chairs, certainly by
the end of this meeting.

I wanted to add my congratulations from all the other chairs on the 60th
anniversary for the NCVHS. It is not NCVHS, it is the Committee, for the
purposes of today it is our Committee. As I look around you all have been
touched by it, you have all been part of the community, if not in the last ten,
certainly in the last 14 years in my term. So I think we have been in this all
together and even longer as I look at some of the past chairs.

Jim Scanlon talked about the fact that the group is very hard working. The
shock and awe slides talking about the last ten years are an important reminder
of that. But the one part that I did want to reflect on for a minute had to do
with the quality of the work. It isn’t just the quantity that has come out in
the last ten to 14 to 20 years, but it is the stellar quality, the clarity of
the words, the clarity of the thought, the succinctness and understanding of
the recommendations, that has really made a difference and sets the NCVHS

I think we see this reflected by the fact that the Secretary — if we look
at the percentages of recommendations that have been implemented over the last
ten to 15 years, we see a very high percentage of all those recommendations
finding themselves if not in regulations, into law. I think we can all reflect
on that.

As Jim would tell us, sometimes it doesn’t happen in one day, but it
certainly has happened with an amazing frequency.

Having said that, I would say I also want to acknowledge the current
committee. Those of us as past chairs hope that the Committee will continue
this tradition. I think we have seen the concept paper, I am very heartened.
There is a very bright future for the Committee going forward.

I do believe that there will be some need for prioritization. It just
seemed like there were an awful lot of bullet points there, but I think that
will be in the evolving activities as you move forward.

Having said that though, I do want to make one or two points here. I want
to throw in, just like John did, a couple of thoughts and recommendations.

One is, on the flight out I had a chance to review the last couple of years
of letters also. I was very impressed with the ICD-10 letter that came out. I
was just reflecting that it is very seductive for a committee like this to look
towards the next thing. I am reflecting on the last ten or 15 years of our
work, recognizing that the NCVHS has always been a thought partner with the
HIPAA implementations.

I will tell you, this ICD-10 implementation is not going to be easy. It is
going to need all of your help and monitoring and advice to the Secretary. So I
am hoping that there are going to be lots more letters and lots more touching
bases with industry as we move forward, because as we know, this is not an easy
thing. So that would be number one.

The other piece was something that we talked about at the Chairs session.
It had to do with communication. John had his take on communication. I have to
say, from my view I am a little more open in how communication should occur,
and I think there are many ways. But I do think there needs to be some
attention not just to packaging — the packaging is wonderful in terms of how
the reports are coming out now — but exactly how it is being communicated.
Twitter may be one answer, but there have to be ways where the Committee is
reaching out to the public.

At the end of the day, and I would once again disagree with Judy about
politics, I think we are in the influence business. Carl White said the same
thing. In anything we do, you need to be thinking about how this is getting out
and touching people. Actually I see Judy and I finally agree on this one; good.

So having said all that, I just want to take a minute and acknowledge
Marjorie and Jim. Being a past chair, they make us all look good. We wouldn’t
get anything done without them. So thank you. I just want to thank the
liaisons. I see Mike Fitzmaurice in the back there, as well as the staff in
terms of all of this stuff. Your dedication is noteworthy. Speaking as a past
chair, we extremely appreciate it.

The final thing I wanted to mention, I had something to do with Harry
coming on to succeed me, and I was very appreciative of the work he has done.
But I really have not had an opportunity publicly to acknowledge the great work
you have done over the last two years. I think you have handled the NCVHS in an
extremely volatile environment, you have handled it very capably and very
nimbly. I think we all know in these periods of change, having the Committee
successfully emerge from all of that is not an easy thing. So I really want to
acknowledge you for that. I think you have gone a super job.

Justine, I think we are all looking forward to her becoming the next chair.
I am reminded of the times that we had spent working on the secondary uses
report. Sunday afternoon calls, Harry, myself and Justine, as we polished the
words, polished the recommendations. When we were done, I would still get calls
from Justine on Sunday, we were still having conference calls. I think this
attention to detail will hold you in very good stead as you look forward to
this, so congratulations.

With that, I just want to acknowledge everyone. It has been our Committee,
it has been 60 good years, and I think what we are all seeing is a very bright
future. So thank you.

MS. GREENBERG: Thank you. During Simon’s tenure the productivity was
incredible. You saw some of those lists of reports and all of that, and the ad
hoc groups which Simon convened. There are no slackers on this Committee, that
is for sure.

Jim, would you like to say a few words? We heard eloquently from you on the
video, but you are here in person.

MR. SCANLON: I had a chance to say some things already in our very nice
video, but just very briefly, let me describe what I think of the philosophy we
have had about the committee, Marjorie and I.

We always looked for the best members we could. We deiced to find the best
chairs and leaders we could for subgroups and for the Committee itself. We
tried to give them the resources, and we tried to find the most excellent staff
we could within HHS to support them, and then we let them go. The staff was not
trying to dominate the Committee’s thinking; we wanted the interaction and
deliberation of the Committee, and it was marvelous and superb.

Simon was exactly right, it wasn’t just the productivity in terms of ideas,
concepts, reports and recommendations. It was the quality. In the case of
HIPAA, many of the recommendations were pretty much taken as given. Everyone
knew they represented a fair process, an open process. They knew that if they
gave the Committee a task, the Committee would put together the consensus and
work it through. There were no hidden agendas that would pop up later when you
decided you were ready to implement policy.

Then there were more global vision documents at the other extreme. Again, I
think the Committee has a perfect mechanism and a chemistry for being able to
get the best ideas not only among the members, but among the industry and the
public health community, the research community and so on as well.

The other factor in the Committee was, we always had between the public
health data per se focus, the privacy and security focus and the looking
forward on technology focus, we always had a balance, so that we had very
realistic recommendations. Sometimes I know the Committee members probably felt
we were spending too much time on technology, too much time on standards, but
after awhile, I think everyone saw how it all fits together and much more
sophisticated, subtle and nuanced the recommendations were because of that.

So again, I just want to thank you all for giving of yourselves over all
this time. I hope we have another ten years at least of the productivity and
the fun we have had so far.

Agenda Item: Acknowledgements and Closing

MR. REYNOLDS: We are near the end. A lot of people kid me about doing a lot
of sports analogies, and I am going to use another one, since there is a big
basketball game tonight. Everybody has been talking the World Cup. I don’t play
soccer, so I am going to step away from that.

The thing that is most interesting to me about NCVHS, the Lakers tonight,
if Kobe Bryant got hurt, the game would be over. When people come and go from
NCVHS, there is still going to be a championship the next year. That is why I
think is so neat about the group.

As I move on to a company that talks about a smarter planet, what better
place to learn than NCVHS. It is exactly what you do, exactly what it is about.
Simon and everybody is exactly correct, this is the Committee. Certain people
have titles, certain people have opportunities, this is the Committee,
everybody that is in this room and everybody that helps. I would add, the
people from ONC. I would mention the people from AHRQ, everybody else. It is
about making a difference. It is about grouping up to make a difference. It is
about all having the same uniform on, even if times you knock a friend down
about a subject. We have been through a number of things throughout my time as
a Committee, and I couldn’t think John enough for welcoming me and having me
understand what it meant, and then Simon mentoring me. Thank you very much.

We are lucky. We have got a great one coming behind me. So there is good
news and bad news. The bad news is, the former chairs just dropped in what
people think about, because I am joining them. On the other hand, the Committee
is on the rise as it goes along.

Justine has been really fun. We came on together, worked under the tutelage
of John and Simon. Watching Justine grow and with what she is doing now, being
part of a team that has completely turned around the hospital system in Boston,
it has been glorious to learn from her and watch her and so on.

So with that, let me introduce the incoming Chair of NCVHS, Justine Carr.

DR. CARR: This really is a family. That was the first phone call I got from
Marjorie, saying, hi, you are on the Committee, it is a family. Then she
proceeded to tell me about, we will have dinners together and we will see our
kids grow up together. I was like, what kind of community — it didn’t look
like that on the Web. But it is like that.

Honestly, I look around the room and I think of all those car rides to
dinners, great restaurants, when Simon was here convenient restaurants. The
stories about, my son went to Cornell and you can read about him in the
transcript, when he graduated two years ago, all these connections. It
absolutely is about family.

We do a lot of important work, but I have to say that we all feel the
sentimentality that goes with this. My grandparents came from Ireland. As it
turns out, my daughter lives there, my son-in-law was born there, and now their
little boy who is four months old is also from Ireland.

When Simon left, we took some liberties with the Irish Blessing. With Harry
we will play it straight, because we took a lot of liberties last evening. I
want to just acknowledge a little bit about Harry. So much has been going on in
his life with his family, his extended family. Lightening struck his house
yesterday, and he has been here, trying to get the insurance company and the
electricity, the cable TV, the Internet, the videogames, all that set back up.
He is here, he didn’t miss a beat. Okay, he didn’t take my call yesterday
morning when I was late, but other than that. But that is the kind of person he
is, he soldiers on.

He called me one morning. He was having surgery. He said, hi, I’m having
surgery, so if anybody is looking for me, could you take that call? I’m like,
what is going on? But that is how he is, devoted in every way.

So as he moves on to this very exciting adventure where he will again make
a difference, because Harry always talks about making a difference, I think of
him on even more airplane rides, going all over the world. So I will be
sentimental and call upon the old Irish Blessing which says, May the road rise
up to meet you, may the wind be always at your back, may the sunshine warm your
face, the rain fall soft upon your face, I guess. Fields. He warned me about
his handwriting. And until we meet again, may God hold you in the palm of his

MR. REYNOLDS: Thank you, everyone.

MS. GREENBERG: We are adjourning to a reception. The reception is starting

DR. CITRO: We are just delighted that the Committee on National Statistics
and the National Academies could host this event. We have several other
meetings going on simultaneously, so I have been running around. But I could
sense the collegiality, the hard work, the service that you all are giving, not
just to the Department of Health and Human Services, but to the nation. I
certainly as one citizen of that nation thank you.

I did want to welcome you to all stay for what I think will be a very nice
reception. You are going up one flight of stairs to have your pictures, and
then you go up the next flight of stairs, and there is an atrium where in the
daytime our cafeteria is, but there will be tables and quite a nice set of
things to nibble on, so you can talk and share more of what is clearly a set of
wonderful experiences that you have all shared over the years.

So thank you so much.

(Whereupon, the meeting was adjourned at 4:55 p.m.)

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