[This Transcript is Unedited]

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Meeting of:

THE NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

June 29, 2005

Hubert H. Humphrey Building
200 Independence Avenue
Washington, D.C.

Reported By:
CASET Associates
10201 Lee Highway, Suite 180
Fairfax, Virginia 22030
(703) 352-0091

TABLE OF CONTENTS

COMMITTEE MEMBERS:

  • SIMON P. COHN, MD, MPH, Chair. The Permanente Federation, Kaiser Permanente, Oakland, California
  • JAMES SCANLON, Executive Staff Director. Office of the Assistant Secretary for Planning and Evaluation, DHHS, Washington, D.C.
  • MARJORIE S. GREENBERG, Executive Secretary. Office of the Director, NCHS, CDC, Hyattsville, Maryland

MEMBERSHIP:

  • JEFFREY S. BLAIR, MBA. Medical Records Institute, Albuquerque, New Mexico
  • JUSTINE M. CARR, MD. Beth Israel Deaconess Medical Center, Boston, Massachusetts
  • ROBERT K. HARDING, MD. University of South Carolina School of Medicine, Columbia, South Carolina
  • JOHN P. HOUSTON, JD. University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania
  • STANLEY M. HUFF, MD. University of Utah College of Medicine, Intermountain Health Care, Salt Lake City, Utah
  • ROBERT W. HUNGATE. Physician Patient Partnerships for Health, Wellesley, Massachusetts
  • A. RUSSELL LOCALIO, MA, MPA, MS. University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania
  • CAROL J. MC CALL, FSA, MAAA. Humana, Louisville, Kentucky
  • HARRY REYNOLDS. Blue Cross Blue Shield of North Carolina, Durham, North Carolina
  • MARK A. ROTHSTEIN, JD. University of Louisville School of Medicine, Louisville, Kentucky
  • WILLIAM J. SCANLON, PhD, Health Policy R&D, Washington, D.C.
  • DONALD M. STEINWACHS, PhD. The Johns Hopkins University Bloomberg School of Public Health, Baltimore, Maryland
  • S EUGENE STEUERLE, PhD. The Urban Institute, Washington, DC
  • PAUL TANG, MD, Palo Alto Medical Foundation, Palo Alto, CA
  • KEVIN C. VIGILANTE, MD, MPH, Booz-Allen and Hamilton, Rockville, Maryland
  • JUDITH WARREN, PhD, RN, School of Nursing, University of Kansas, Kansas City, Kansas

P R O C E E D I N G S (9:05 a.m.)

Agenda Item: Call to Order.

MR. COHN: Good morning. I want to call the meeting to order. This is the
first day of two days of meetings of the National Committee on Vital and Health
Statistics.

The national committee is the main public advisory committee to the U.S.
Department of Health and Human Services on national health information policy.

I am Simon Cohn, the associate executive director for health information
policy for Kaiser Permanente, and chair of the committee.

I want to welcome the committee members, HHS staff, and others here in
person. Of course, I want to welcome those listening in on the internet, and
remind everyone, as always, to speak clearly and precisely into the microphone,
so those on the internet can hear you.

With that, let’s have introductions around the table and then around the
room. After that, I will make some brief remarks and then we will get into
agenda review.

As we do the introductions, for those on the national committee, I would
ask, if you have any conflicts of interest related to any issues coming before
us today, would you so publicly indicate during your introduction.

MS. GREENBERG: I am Marjorie Greenberg from the National Center for Health
Statistics, CDC, and executive secretary to the committee.

MS. WARREN: I am Judy Warren, University of Kansas School of Nursing,
member of the committee, and I am not aware of any conflicts.

MR. HOUSTON: I am John Houston. I am with the University of Pittsburgh
Medical Center. I am a member of the committee and I have no conflicts.

MR. REYNOLDS: I am Harry Reynolds, Blue Cross Blue Shield of North
Carolina, a member of the committee and no conflicts.

MR. ROTHSTEIN: I am Mark Rothstein from the University of Louisville School
of Medicine, a member of the committee. I have no conflicts.

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

MR. VIGILANTE: Kevin Vigilante, Booz-Allen Hamilton, no conflicts.

MR. LOCALIO: Russell Localio, University of Pennsylvania School of
Medicine, and no conflicts.

MS. MC ANDREW: Susan McAndrew, Office of Civil Rights, privacy liaison for
the subcommittee for privacy and confidentiality.

MS. TRUDEL: Karen Trudel, Center for Medicare and Medicaid Services,
liaison to the committee.

MS. MC CALL: Carol McCall with Humana, no known conflicts.

MR. HUNGATE: Bob Hungate, Physician Patient Partnerships for Health, no
conflicts.

MR. WILLIAM SCANLON: Bill Scanlon, Health Policy R&D, member of the
committee, and no conflicts.

MS. CARR: Justine Carr, member of the committee, Beth Israel Deaconess
Medical Center, no conflicts.

MR. HUFF: Stan Huff, Intermountain Healthcare and the University of Utah in
Salt Lake City, and no conflicts.

MR. FITZMAURICE: Michael Fitzmaurice, Agency for Health Care Research and
Quality, liaison to the full committee, staff to the subcommittee on standards
and security.

MR. STEINDEL: Steve Steindel, Centers for Disease Control and Prevention,
liaison to the full committee.

MR. BLAIR: Jeff Blair, Medical Records Institute, member of the committee.
I am not aware of any conflicts.

MR. JIM SCANLON: Good morning. I am Jim Scanlon. I am with the HHS Office
of Planning and Evaluation, and I am the executive staff director for the full
committee.

MS. SQUIRE: Marietta Squire. I am the CDC National Center for Health
Statistics, and I am staff to the committee.

MR. TROUTMAN: Allen Troutman representing the FHA program office.

MS. WOOLEY: Sherry Wooley RSO(?).

MR. RITEMAN: I am Adam Riteman(?), intern in Dr. Brailer’s office.

MS. JONES: Katherine Jones, CDC, National Center for Health Statistics and
staff to the committee.

MS. BALINTOSKY: Danielle Balintosky(?), the National Journal.

MS. MOIRER: Gwyneth Moirer(?), SPH intern at National Center for Health
Statistics.

MS. JACKSON: Debbie Jackson, National Center for Health Statistics, CDC,
committee staff.

MS. ROGERS: Ann Rogers, writing and editorial consultant, and I worked on
the populations report.

MR. KYLE: Frank Kyle, American Dental Association.

MR. LEE: Dr. Tad Lee(?) newly appointed senior health information privacy
outreach specialist, Office for Civil Rights and Health and Human Services.

MR. DICKMAN: Barry Dickman, Department of Veterans Affairs, Veterans Health
Administration.

MS. FRAZIER: Judy Frazier, American Optometric Association.

MS. BURKE-BEEBE: Suzie Beebe, ASPE.

MS. DICKERSON: Audrey Dickerson, HMS.

MS. SOROS: Nancy Soros(?), Government Health IT.

MS. GRANTHON: Miryam Granthon with the Office of Minority Health and staff
to the populations committee.

MR. SHEEN: I am Tony Sheen(?) with the consulting firm, Point in Care
Partners.

MR. ALFANO: Bill Alfano(?), Blue Cross Blue Shield Association.

MS. NOLTE: Emily Nolte, National Opinion Research Center.

MR. SOROS: Jim Soros, ACMS.

MR. RUDDY: Dan Ruddy, American Health Information Management Association.

MR. COHN: I want to welcome everyone. As a comment, before we do a general
review, I just want to make a couple of comments about the activities of the
last several months.

I am, of course, reminded that at our March meeting I observed that this
will be an interesting and, I think I will add an exciting time for the full
committee.

As I think as we reflect on things, many of our recommendations, including
the need for increased HHS leadership in health information technology moving
us toward the NHII are coming to pass.

Since our last meeting, Secretary Leavitt has unveiled his 500 day plan,
which includes really as a centerpiece the unveiling of the next phase of the
HHS health IT strategy.

This phase will also unfold over the next 500 days and include convening
leaders to coordinate public and private health IT efforts, developing
strategies, contracting for studies, funding prototypes and demonstrations to
enable health IT.

I know David Brailer will be talking about this later when he meets with us
this afternoon but, from my view, really what we are talking about is an
acceleration of activities already underway that we have been sort of
shepherding and really speak of, I think, our vision from our documentation,
information for health, a strategy for building the NHII, which we published in
2002.

Really, what we are talking about is beginning to use health IT to help
bring health care into the information age and transform the health care system
and improve the health of all Americans. I think this is something we can be
very excited about, and we support his efforts.

The issue I, and the executive subcommittee, have been working on really
how we can best support the secretary and the department going forward in what
I would describe as these changing and really accelerated environments.

The executive subcommittee, with Jim Scanlon, Marjorie Greenberg, Debbie
Jackson’s help, and a number of others of you who have helped provide some
input into our thoughts, have helped assist me with preparing briefing
materials and, more important, thinking through how we could help and provide
leadership and value in this new environment.

Indeed, because of our content expertise and experience in this whole area,
indeed, we really laid the framework for a lot of what is going to be coming
forward. We have a lot to contribute.

In addition, we have a reputation for strategic focus, as well as having an
open collaborative process and the ability to deliver timely, thoughtful,
practical recommendations that are supported by both the public and private
sectors.

Yesterday I met with the Secretary to brief him on the NCVHS and discuss
ways we may be able to assist in going forward.

I want to share with you that it was a very productive and positive
meeting. The Secretary is very interested, as you know, in interoperable HIT,
and expressed his appreciation for our work, which has really laid the
foundation for these next step initiatives.

While clearly these new initiatives are just unfolding, I think it is safe
to say that we will play a significant role in the next phase of the HHS health
IT strategy going forward.

As I have commented, this is an exciting time, and I want to acknowledge
all of you for your hard work, I think your dedication to the task and,
probably most important, your commitment to an improved health care system and,
of course, a better America which will result from that.

Again, thank you for all of your help, and I think we will move forward. We
will talk about this, obviously, as the day goes on and tomorrow, as we look at
our various work plans and discussions of subcommittees and all of that.

I think in front of you, you also have briefing materials that we shared
with the Secretary that I thought you would all find interesting, both a
transmittal letter and a two-page letter that, once again, was produced with a
lot of your assistance.

Now, on another note, since our last meeting, I have attended a meeting of
the National Center for Health Statistics board of scientific counselors.

They are a very impressive group ably led by June O’Neill. who has just
arrived. So, welcome. I am very pleased that June has decided to become the
NCHS liaison representative to the NCVHS, and obviously I want to welcome you.

I am also, on the advice of Don Steinwachs, appointing Bill Scanlon to be
our liaison representative to the board of scientific counselors.

Bill, I want to thank you. I know you have a very busy schedule, to put it
mildly, and I am really delighted that you are willing to take on this new
responsibility. So, thank you.

MR. BILL SCANLON: I am looking forward to it.

MR. COHN: Now, with all of that, let’s move into the agenda review, and we
will talk, I think, further tomorrow about executive subcommittee actions, and
the results of the first meeting we had, and then talk about our plans for the
upcoming off-site.

This morning we begin with an update from the department, Jim Scanlon from
ASPE, Karen Trudel from CMS, and Susan McAndrew from OCR. Obviously, thank you
for joining us.

Then we will have an update from June O’Neill and Ed Sondik, if he is here,
from the board of scientific counselors.

After the break, we will begin discussions of the population report. I want
to thank Vicky Mays — is Vicky Mays here today — Vicky Mays, a former member,
for her leadership and persistence in completing this report, as well as,
obviously, Don Steinwachs, the chair of the population subcommittee, for
helping move this to a place where it can come before us for action at this
meeting. So, thank you.

This will be followed by a discussion of the NCVHS 2003-2004 report, and we
will talk a little more about that when we get to that report.

Now, following lunch, we are pleased to have David Brailer, the national
health information technology coordinator, joining us for an update on current
initiatives and issues, and I am sure we will talk some more about all the
various activities going on.

This will be followed by a briefing on the federal health care
architecture, by Leroy Jones of ONCHIT.

The final presentation and discussion before the full committee adjourns
today will be by the Commission on Systemic Interoperability.

We are very pleased to have Scott Wallace, chair of the commission, joining
us to update us on the progress of that activity.

I should, I guess, disclose, although I don’t think it is necessary for
full disclosure, I actually am a member of that commission, but I will
certainly defer to the chair, and I don’t think there is any conflict of
interest associated with that.

Now, after adjourning the plenary session, we are going to have two
subcommittee and work group meetings, which we will discuss as we move through
the agenda today.

I just want to remind everybody — and I will say this a couple of times —
tomorrow’s subcommittees and work groups meet at 8:00 a.m. and, more important,
the full committee is meeting an hour earlier than usual, which is 9:00 a.m.,
and we will sort of talk about how that day will progress, as I said, before we
break today. Marjorie, would you like to mention the dinner? Please.

MS. GREENBERG: We will have our dinner social, as we always do on the first
night, and we are going to be going to Rosa Mexicano, which the executive
subcommittee did a site visit, a pilot test there, and it was very
satisfactory.

I believe it is right at the Gallery Place metro stop, is it 7th and I?. It
is right across from the MCI Center.

The people who know are not here at the moment — 7th and F. Could I just
have a show of hands of who is planning to join us?

[Dinner logistics discussed.]

MR. COHN: With that, why don’t we move into the update from the department
and I think, Jim, we will have you lead of, please.

Agenda Item: Department Updates. Data
Council.

MR. JIM SCANLON: Thank you, Simon, and good morning, everyone. A number of
things, as Simon indicated, have occurred since we met in March, I believe it
was, and I don’t want to steal David Brailer’s thunder, but I will just remind
everyone of the Secretary’s announcement on June 6 of the health IT strategy
and initiative.

Then I will talk about some of the department-wide data and statistical
policy activities, including some focus on population health statistics, at the
data council and among our agencies.

At any rate, let me start with the Secretary’s announcement. On June 6, you
will all remember — I think you have press releases and background material in
your briefing book — the Secretary announced his plan and strategy for moving
forward on health information technology to transform and support improvements
in the health care system.

There were several elements of that. I will only mention them briefly. I
think, as Simon indicated, the cornerstone of the effort is the formation of
basically an advisory committee.

I sort of think of it as captains of the health industry, 17 members who
that would be called the American Health Information Community.

HHS would appoint the 17 members. The secretary himself has indicated that
he wanted to chair the group itself.

Interestingly, it is chartered for two years, and it could be renewed for
additional years, but the goal, I believe, is to have this transform into a
public private kind of an entity.

I don’t know exactly what the governance would be, but some sort of a
public private entity down the road, and certainly within five years.

I think we have — Simon and I were discussing this — I think we have all
indications — I hate to make predictions — but we have every indication that
the NCVHS would be formally involved with that committee in some specific ways.
So, we hope to have a very solid relationship.

Much of this work, as you know, builds on the previous work of the NCVHS,
and the department. It seems like timing is everything.

Many of the ideas that we are seeing bearing fruit right now, you will
remember, were kind of initially incubated and thought out through the NCVHS
data council and other groups within the department back in the early 2000s but
timing, again, I think is everything.

So, we really are entering kind of a new stage of the more specificity and
some specific directions in terms of the health information technology
initiative in the United States.

I will leave the rest of the details to Dr. Brailer, who will be talking
more about this later today. Let me turn over to the area of population health
statistics.

Actually, it is more than just health statistics. It is health and human
services and economic statistics as well.

Within HHS, as you know, we have the data council periodically reviews
where we are with all of our major health statistics systems, our major
surveys, and so on, and we are just completing that process.

Simon, actually, attended some of the data council meetings where we went
through this, and we are entering the next budget planning year, fiscal year
2007.

So, I think budgets are going to be tight overall. I think you all know
that, but we are not looking at any big increases, any big initiatives, for the
most part.

It looks like, at least, the initial focus is that most of our major
statistical systems and data systems are being supported and protected, at
least, at the current services levels, which is a goal, which is certainly the
first goal, we always have, to nurture and protect our basic statistical
systems.

There are some improvements planned, although, again, there are no major
initiatives, that we can identify so far, although again I will caution you, we
are still looking at the budgets in detail, and there are always surprises, but
in general I think that is the theme we are seeing.

The data council will be sending some recommendations next month, probably,
early, to the departmental leadership on themes for the 2007 budget.

In the population statistics area, the data council, over the past probably
eight months has identified about five areas for what we are calling data
improvements and enhancements.

In each of these areas, we started some initial assessments and, in some
areas, we have actually made some improvements, put some initial investments
in, or had some subsequent discussions about how we can improve the area. Let
me mention those to you this morning.

The first area — this is not in priority order — has to deal with
prescription drug data, prescription drug utilization and expenditure data.

We have focused on some of this in association with the medicare part D
benefits, but some of it more broadly.

We are trying to look at needs for program and policy data in those areas,
as well as research needs and statistical data needs there.

We have a number of enhancements that are already underway. For example, we
have put some additional resources into the medicare current beneficiary
survey, and we have some analyses planned from some of the other surveys.

This is actually prescription drugs per se. Not many of our surveys
actually get that much detail, but we do have some.

A second area — this is certainly an interest of my boss, Mike O’Grady and
others — is national health insurance data, particularly health insurance
coverage data and the uninsured.

As you know, we have about three or four surveys that each give you
different dimensions and estimates of the health insurance coverage and related
issues, and most of them have other focuses as well.

There is an interest now in seeing how we can understand some of the
differences in the estimates among those four surveys, and reconcile
differences, or at least understand why they differ, and then to make some
improvements in terms of measurement and coordination generally.

For example, we are planning a web site, where we will probably pull
together all of the data on health insurance here in HHS and in census. So, it
will just make it easier for folks to know when the data is coming, what it
means, how to interpret it and so on. So, that is a second area.

A third area is the whole state data area. Here, this has always been a
difficult area. It seems it is — obviously, priority is always on national
data here at the federal level, but there is interest in improving, where we
can, state data on health care access, health care utilization, and health
insurance. So, there we will be looking at how we can improve that.

Often this is through over-sampling or extensions of our national surveys.
In some cases we allow states, encourage states, to buy into our national
surveys. California, for example, did that, and now they have their own
California health survey. A couple of areas there where we are trying to do
this.

Again, we are trying to do this in a budget year where there is not a lot
of new money available. So, it is going to require some refocusing and some
focus on what we can do within budget constraints.

The fourth area is, again, improving data on income and assets. Many of our
surveys collect this kind of information.

We don’t make — in HHS we are not the primary statistics agency for making
estimates of income and assets, obviously, but income and assets are a major
policy variable for most of the other programs we do deal with.

So, we are looking at, what is the nature of that kind of data we collect
now in our major surveys, and then how do they compare, what is the quality of
that data, and then what are some ideas for moving forward with enhancements.

Then the final area is certainly an area that the full committee has been
very much interested in. We are looking at, again within the budget
constraints, how can we move forward in the area of race and ethnicity data to
eliminate race and ethnicity disparities in health care.

There we are looking at, again, what we can do analytically, what we can do
in terms of dissemination and web sites, and then what we can do in terms of
some improvements that we have had in the pipeline.

For example, the health interview survey that you are all familiar with, in
2006 will be undergoing a major redesign.

Actually, it turns out that the redesign substantially improves the
capability to make some estimates for some of the race and ethnic populations
and subpopulations.

So, we are looking at what we can do there and sort of as resources permit,
what kind of actual improvements in data collection we can look at.

Just briefly, our privacy and confidentiality committee under the data
council, again, is active. I think we are going to have them look at — this
will probably be an internal study, but they will be looking at best practices,
current and best practices, for confidentiality and research and statistics.
Most of our agencies have statutes and other policies that they employ.

Finally, in my office, under the data council, we have initiated a study to
look at the area of data standards, but it is data collection standards and
measurement standards.

For example, in our surveys and our surveillance systems, in our research
activities, what is the nature of the standards that exist.

You are all familiar with them. There are standards for asking race
ethnicity questions. There are standards for collecting age data. There are
standards for collecting sex and gender data. There are standard classification
systems for diagnoses, for procedures, and so on.

So, we have a contractor who will be looking at what do we now do in our
surveys, in our major surveys, what are the potential opportunities to
incorporate further standardization and comparability into our surveys, and
then to make some recommendations and opportunities for integration. I will
stop there.

MR. COHN: Any questions?

MS. GREENBERG: Thank you, Jim. Not surprisingly, my ears perked up on the
standards. Is the contractor going to be looking at the standards that are used
for these — I guess you are talking about a number of the demographic and
associated variables that are being used in the clinical and administrative
world, such as HL7 and X12?

Increasingly, there is discussion of, when we have electronic health
records, you might be able to feed some of the data that we now rely on
surveys.

I certainly don’t think they will replace the need for surveys, and I think
the surveys generally are at a more advanced stage in collecting these
demographics.

So, it is not necessarily that they should adopt what is being used by
these standard development organizations, but it seems it is very important to
have an interaction between those environments.

MR. JIM SCANLON: The whole strategy, I think one phase of the — they are
just different legs of this stool. One of them will be to look at, in our major
surveys and major data collection systems now — surveillance — to what extent
are we using any sorts of standards.

These are often called statistical standards in the statistical world. Race
ethnicity is one of them. There are standard classifications for various
things, for statistics.

Where there are not standards, there are conventions that we have agreed on
for how we will collect data.

So, we want to make sure, number one, that what are we collecting now in
the major surveys, the major data systems, and these are our work horse data
systems. These are the ones that really make up 90 percent of our national
statistical resources in health.

Then we will be looking at what are the standards that are available at the
same time. There, we won’t just confine those. We will clearly look at
statistical standards, but we will look at standards in the health care world
generally.

It has always been a strategy of ours that we would try to link population
based surveys with administrative data where we could.

In fact, we have been doing this for decades. I hope people know that. We
have always had, and we have included in our population based surveys, the
capability to do that, and we have asked for — we typically ask for consent of
the respondents right at the beginning to do that, the health interview survey,
for example.

So, we have always thought it part of our strategy that, as the
administrative and clinical, further down the line, standards and data became
more usable for statistics and research purpose — this often takes quite a
while — that we would have the capability to link. So, we would be looking at
whatever standards would make sense in that area as well.

MS. MC CALL: Just to extent that a little bit further, the theme of
interoperability, technologically it is important and, if you think about it,
it is important with respect to language and standards and taxonomies and all
of that.

Have you had any discussions about when there is more than one convention,
or more than one published standard, about creating a mechanism that helps
people walk from one to another?

MR. JIM SCANLON: This is a classic problem. You know, if you have two
surveys, you get two estimates, if you have three, three estimates. It is the
same with actuaries.

MS. MC CALL: Thank you.

MR. JIM SCANLON: It is complicated because, in many ways, it gives you a
different perspective on the same problem, and in other ways they look like
there is obvious duplication and it is actually confusing to policy makers.

You know, is the number of uninsured 20 or 45 million people. So, I think
— and I think we will look at that in terms of, there are not as many
standards, unfortunately, as we think.

We made up some in HHS, conventions we agreed to a while back. We followed
the OMB race ethnicity standards. We have a convention for collecting date of
birth. It shouldn’t be that hard, but we had to standardize that.

Even sex, oddly enough, when we looked at, let’s say, our 30 most popular
data systems, there were probably about six variations of ways to do it. This
includes the odd things like, where it is undefined or undetermined or
something like that.

Demographic is probably one of the major areas where you get the best pay
off, particularly age groupings, where we generally try to correspond to the
census, so that you can compare.

I think this will clearly come up, Carol, where we have more than one, and
any guidance — I think we will try to get a sense of what do people think is
the best or the most useful, and then we will have to see how we can sort of
get people to move to one.

Interestingly, in survey research, there are sets of measures for cigarette
smoking, for example, what constitutes a current smoker, and in substance
abuse, what constitutes a current user.

There are sets of questions that have more or less become the standard way
of asking it, although clearly we don’t ask it in the same way in all of our
surveys. So, we will look at how much we can get into that. Income is another
area. We ask it in many different ways.

MR. BILL SCANLON: In terms of trying to improve the information on people
using private insurance, because I know we have a lot of information on the
public insurance side, have there been discussions about the potential of using
the federal employees information, even though it is not a representative group
of people in terms of being able to identify a wide range of people, a lot of
different markets?

It seems that there is a potential there, on a routine basis, to combine it
with some of the survey information we have, that we could get maybe a better,
richer sense of what is happening on the private side.

MR. JIM SCANLON: If you are part of the federal employee health benefit
program and you fall into one of our surveys, and we have claims — we collect
claims data — then it would come up automatically.

In general, we haven’t systematically used the — we have used it more for
specific policy research. For example, in ASPE we just finished a study on the
federal employee health benefit program, how do they implement mental health
parity requirements, and we used federal employee health benefit information
there.

We don’t otherwise use it. I am not aware that we use it in a more
systematic general purpose statistics basis, but I think we should really look
at that.

MR. LOCALIO: Jim, I am going to direct this question to you, but maybe it
applies to others. It seems there are four ongoing initiatives that have to do
with privacy and confidentiality, the one you mentioned, privacy and
confidentiality subcommittee on the data council is looking into various
matters.

The first priority of AHIC is going to be to make recommendations on how to
protect privacy and security. Mark, in the subcommittee on privacy and security
here, has been looking into those matters for a long time, and the subcommittee
on populations here has been looking into some of these issues with regard to
access to data.

What is going to be the formal or informal system or structure for making
sure that the right hand knows what the left hand is doing, knows what the
right foot is doing and the left food is doing, so that we have some
consistency.

MR. JIM SCANLON: First, I am happy that we actually have four groups
looking at privacy. Usually we don’t even have one.

Each of these, I think, have different perspectives. To be honest, in
privacy, I think we are at a point where we really do have to look at exactly
— given where people want to head — this is in the HIT world, not so much
research in statistics — I think there we do have a well thought about body of
statutes and policies and practices.

I think we are — I don’t know. We are just going to have to communicate,
but the data council’s group is looking at, number one, its Health and Human
Services Privacy and Confidentiality issues, and it is largely an internal
focus about how we, number one, coordinate internally and, number two, when we
do have privacy issues, we have a way of dealing with it internally.

The NCVHS committee really has a much broader advisory function. The other
two, I think they are in formative stages. I don’t know where they are going to
go. I think you are right, we have to find a way to have all of the information
coming together.

MR. COHN: Anything else? Well, why don’t we move on to Karen Trudel. Karen,
thank you very much for joining us.

Agenda Item: Data Standards.

MS. TRUDEL: Thank you. I am going to talk about various aspects of HIPAA
and touch a little on e prescribing and some of the e health initiatives that
CMS is working on right now.

So, let me start with HIPAA. I am happy to report that the attachments
proposed rule, claims attachments — HIPAA claims attachments proposed rule —
did go to OMB on May 30, and based on their normal review schedule, our
tentative publication date will be September 23. So, we ar happy that we have
been able to move that along.

The national provider identifier enumeration system did go into operation
on May 23, as planned, and at this point we have enumerated about 22,000
providers successfully. The majority of them, as you can imagine, are from
Florida, California, Ohio, New York, Texas and Tennessee.

This is a one for one enumeration. Almost all the applications were
received via the web based application system.

The bulk enumeration process where we will be able to enumerate groups of
providers will begin in the fall time frame.

We have revved up our outreach process as well, and I am happy to report
that last week we had our first HIPAA round table call that discussed only NPI
issues.

It was very successful. We had about 1,500 connections on the line, and our
next one is scheduled for late September.

In terms of HIPAA compliance at this point, again, over 99 percent of our
inbound claims are compliant. Eighty-one percent of our remittances advices
going out are in a HIPAA compliant format.

What that means is that 81 percent of our trading partners are able to
receive HIPAA compliant formats. Less than 30 percent of our coordination and
benefit transactions are going out in compliant format at this point.

It is primarily because we have recently switched over to another
coordination of benefits contractor, and a number of plans made the decision
that they only wanted to test once, and they were going to wait until the
coordination of benefits contractor was up and running, and then would do their
testing and go live.

So, we are seeing some increase over the past months, and we expect it to
rise sharply over the next quarter or two.

The real time 270-271, which is the eligibility query and response, is
undergoing testing at this point. We are testing with several very large
clearing houses.

The testing is going very well, and we are expecting that we will have a
regular EDI based real time 270-271 capability coming from the new data mart by
September.

Shortly thereafter, we will have a web based process where providers can
use the internet to do 270-271 queries as well, on a one by one basis.

So, that is compliance. Let me talk a little bit about complaints. At this
point, we have received a total of 334 complaints on transactions and code
sets. About 190 of them are still open.

The vast majority still are based on the fact that a compliant transaction
was rejected by a trading partner, although we are starting to see that the
transactions that are included in the complaint, that are the basis of the
complaint, are moving from the claim to the query response transaction.

So, we are starting to see complaints about 270-271, 276-277, which is
encouraging because, again, that is where much of the return on investment is
expected to be generated from.

Also, we have received a whopping big 13 security complaints since the
compliance date in April. Interestingly, seven of those were crossed over to us
from the Office for Civil Rights, based on our dual processing complaint
agreement. We are working through those.

Let me talk about e prescribing for a little bit. We are still working on
the final rule, and are getting much closer to working on the request for
applications for the e prescribing pilot that is to be carried out in calendar
year 2006.

We are working very closely with the Agency for Healthcare Research and
Quality, AHRQ, and they have helped us enormously with setting up the proposal
for getting the applications in.

They will be doing much of the vetting and scoring for us. So, we will be
using their normal process for doing that.

On the e health front, I am also happy to report that the Office of HIPAA
Standards is now officially the Office of E Health Standards and Services. Our
name change was published in the Federal Register, I believe, last month.

We are continuing to work on both strategic and tactical planning to pull
all of CMS’ e health activities together.

One thing in particular I would like to report to you is that we are
planning a CMS open door forum, which is similar to our HIPAA round tables.

Normally, open door forums are geared toward a particular provider or
population — hospitals, physicians, et cetera.

This one will be an open door forum on the concept of personal health
records, and what CMS’ role would be in the personal health records space.

We expect to have that, I think it is tentatively scheduled for July 21,
and Simon, I believe, is going to participate in that open door forum, to lay
the groundwork, based on the material that NCVHS has already gathered, in terms
of personal health records, so that we are not starting over.

We are using, again, as always, the NCVHS experience, and knowledge, to lay
the ground work, and we are going to be hopefully getting perspectives from
plans, providers, provider organizations, beneficiary organizations, vendors of
personal health record tools, to get a good idea of essentially where CMS could
play a productive role in helping to move along with personal health records. I
think I will take questions now, if you have any.

MR. BLAIR: Karen, thank you. It is really nice to see progress on so many
fronts. I have a question, but I realize that a lot of the members of the
subcommittee may not be familiar with either history or some of the terms, so
let me just do a very brief preface.

During the last four years, or five years, NCVHS has been very much
involved in evaluating, selecting and recommending standards, especially with
respect to clinical data, as well as the HIPAA, which is mostly financial and
administrative data.

Those standards have been evaluated and pretty much recognized as CHI —
consolidated health informatics — initiative standards, which the latest RFP
for standards harmonization indicates will be the foundation of how we move
forward.

So, now that you know what CHI standards are, I can ask my question to
Karen, and it will make some sense to the rest of you.

Karen, can you give us any kind of a — you gave us an update on the HIPAA,
the adoption rate of the different HIPAA transaction standards, and in short,
can you give us an update of the status of the CHI standards at this point, in
terms of who is responsible, how it fits into the broader picture, and how it
will relate to the federal health architecture, as well as to the new RFP for
standards harmonization.

MS. TRUDEL: That was a lot of big questions. I will supply part one of the
answer, and defer to Lee Jones, of the Office of the National Coordinator, who
will be speaking this afternoon, to supply his perspective on the issues as
well.

We do defer to the federal health architecture, and the Office of the
National Coordinator, at this point with respect to CHI, because the CHI
initiative has folded in as a work group under the FHA, which, if one stops and
thinks about it, makes perfect sense, because clinical terminologies and
messaging standards are a basic building block of any kind of an architecture
for health.

It is difficult to provide compliance numbers with respect to CHI standards
in the same way that we do for HIPAA.

HIPAA, if you will recall, was industry wide, and there was no kind of
phasing in. It was for certain specific administrative transactions.

The implementation for CHI was deliberately made longer time. It was to
minimize risk and to minimize cost. The concept behind it was that we would
only implement, or look to implement, CHI standards in systems when those
systems were up for a major redesign or a new system was being developed.

So, because I don’t have the denominator, it is very difficult to give you
a progress report. I think what I can say is that agencies in this federal
health space are definitely looking to make sure that they have incorporated
the CHI standards into their architectures, into their information technology
review processes, into their contract language.

I know CMS is in the process of doing many of those things. I know, for
instance, DOD has done many of those same things, too.

I would say that DOD and VA, in particular, are working on implementing CHI
standards, because they have certain specific program initiatives that they are
required to do by a date certain. So, that is really the best answer I can give
you, and maybe we can elaborate on it this afternoon.

MR. COHN: Thank you, Karen. Jeff, you can get a chance to re-ask it this
afternoon.

MR. REYHOLDS: Karen, as it relates to NPI, have most of the providers that
have gotten NPIs to date single providers, or have you seen institutions step
forward and, if they have, how do you see the make up of that versus the way
they used to do business, as far as numbers are concerned?

MS. TRUDEL: I am sorry, my numbers don’t break down that way. It is just by
web and paper and which the top states are. I can’t answer it, Harry, sorry.

I would guess that many of them, though, are individual providers, because
there is some question in some providers’ minds as to how they are going to
structure themselves if they are institutional providers, in terms of
requesting numbers. I know that medicare has not put out its guidance on that
yet.

MR. FITZMAURICE: Thank you, Karen, for the good update, very comprehensive,
as usual. For years, CMS has had an internet policy for submitting claims, but
has not implemented the policy.

I wonder if CMS is moving in the direction of permitting claims to be
submitted through the internet. Do you have any pilots or plans to let the
contractors or the intermediaries, the carriers, do this? How does that stand?

MS. TRUDEL: That is really a very big question. When you look at web
enabled transactions, there is a huge infrastructure that goes under it, in
terms of data centers and security and other things.

What I will say is that we are definitely moving in that direction. We do
have a couple of pilots that are already happening which are not accepting
claims over the internet at this point, but are providing better service to
providers in web enabled areas, like claim status information via the web, the
ability to download a remittance advice in a PDF file.

We are definitely moving in that direction, and I think the overall
strategy that the agency is working on to modernize medicare fee for service,
to modify our infrastructure, will inevitably lead us to the place that we will
have a much larger web presence than we have in the past.

MR. COHN: Thank you, Karen, very much. Sue McAndrew?

Agenda Item: Privacy Rule Compliance Update.

MS. MC ANDREW: The privacy team within the Office of Civil Rights continues
to work on reinventing itself. Part of our move forward, I am very happy to
introduce Patrick Hadley, who has joined us. This is his first week. So, he is
getting to meet and greet lots of people.

Patrick comes to us from the Indiana state department of health, where he
was the privacy officer there for two years.

He is taking over the outreach function and the public education function
within the privacy team. So, hopefully we will begin to be more proactive in
the areas of our outreach efforts, and how we communicate with not only covered
entities, but with the public at large, and will have a much more structured
agenda for speaking engagements, and turning out responses to correspondence,
and other inquiries that we get, and will stay on top of our technical
assistance.

So, he will be wearing many hats. He is getting used to them all, and we
are going to try to treat him gently for the first couple of weeks, so that he
thinks this is a really great job that he has gotten. Then the reality will set
in.

MR. COHN: So, we shouldn’t ask him any questions yet.

MS. MC ANDREW: We are very happy to have him. If you — this is really the
position that Kathleen Pfyffe had in the early days of the team, before she
moved on to Dr. Brailer’s operation.

Okay, I am trying to remember my timing on this. Earlier this month, we did
issue some new guidance on the web concerning how protection and advocacy
programs that operate in all states, I believe, can achieve access to protected
health information in order to do their interventions and advocacy on behalf of
mentally disabled and other persons in need.

They — essentially, the protection and advocacy statutes do require
entities to share information with them. So, most of what they do will meet the
permission in the privacy rule where required by law, disclosure.

We have made that clear in an FAQ, and hopefully this will ease some of
their access problems to information, so that they can effectively advocate on
behalf of their clientele.

On the other policy front, I would say the common period closed last week
for the HIPAA enforcement rule. This is the rule that will govern how we move
forward jointly, both CMS and OCR, on both claims management as well as working
up a case for a civil monetary penalty and notification requirements to
entities, as well as hearing rights, if we do impose a civil money penalty.

I understand that we received somewhat less than 50 — around 50 comments
on this rule making. So, we are looking forward to being able to move rapidly
through the common analysis and coming to a final rule on schedule, which will
hopefully be out this fall.

On the privacy complaint side, in addition to identifying and referring
seven security rule complaints to our friends in CMS, to date, as of the end of
May, we had received over 13,000 complaints.

I ran the numbers this morning, and we really are up over 13,600
complaints. We have continued to maintain a closure rate of 65 percent.

MR. BLAIR: These are complaints of what nature? I don’t understand.

MS. MC ANDREW: These are complaints alleging privacy rule violations.

MR. BLAIR: From any and all sources, 13,000?

MS. MC ANDREW: Yes.

MR. BLAIR: So, it is the whole bucket.

MR. JIM SCANLON: Cumulative.

MS. MC ANDREW: Cumulative, yes, since April 2003. So, that means that to
date we have closed some 9,000 complaints.

The allegations continue to run to form. Again, impermissible uses and
disclosures continue to top the ranks of the things most complained about, as
well as the lack of adequate safeguards.

We still get complaints about access, denial of access, to write to their
records, and we are getting an increasing number of complaints about the fees
that are being charged for the access to records.

The fourth most frequent thing complained about are potential violations of
minimum necessary, and concerns that authorizations were not obtained when they
were needed.

There has been no change in the types of entities complained against. That
continues to be private health care providers and general hospitals and
pharmacies, outpatient facilities, as the four top entities, and then group
health plans continues to be the fifth most complained against group. We have
referred 211 of these complaints to the Department of Justice for potential
criminal prosecution.

In terms of trends, I mean, for most of this year, we were running, on
average, between 140 and 145 complaints a week, and this is distributed across
our 10 regional offices, although Atlanta continues to get the lion’s share of
these complaints.

I think they still are running fairly true to the population distribution
that is reflected in our 10 regional offices. So, it is not like people in
Atlanta are more cranky than other people, or more privacy prone. It is just
that is where the population is.

In June, there has been a slight downtrend in the number of complaints, and
we are averaging only a little over 100 a week.

So, I don’t know whether that is because the numbers aren’t quite complete
for June, or whether the summer is beginning to set in, and we may get some
relief in terms of the influx of complaints. We are seeing just a mild
downtrend and we will see if that holds.

MR. COHN: Thank you. Questions?

MR. HOUSTON: I will ask my typical question, which is any news on
statistics that we had talked about before.

MR. JIM SCANLON: A little louder so we can hear you?

MR. HOUSTON: A question regarding on any update on statistics we have asked
for before?

MS. MC ANDREW: I think only — the only hope on the agenda in that area is
that we do have vacancy positions out.

It also is summer. So, we have summer interns. So, we have this additional
manpower from unusual sources, which we can — which we are going to be using
to work with the complaints data base, to see —

MR. HOUSTON: You have my suggestions, still?

MS. MC ANDREW: Yes, I still have your suggestions, although they are in
danger, because one of the things we are doing is, we are moving offices. So, I
am trying to make sure that I don’t lose important pieces of information.

MR. COHN: You have asked that for how many years now?

MS. MC ANDREW: Not years, but about a year.

MR. BLAIR: What was it that you are asking for trends on?

MR. HOUSTON: There was a variety of just trends in terms of types of
providers, just information on types of provider types of complaints, just to
get a sense of where really the focus of issues were, so as the privacy
subcommittee sort of explored and continued to deal with this issue, that we
could try to understand really where were the issues arising, and try to just,
again, figure out what our agenda should be.

By the way, if you do have interns, I would be more than happy if you would
like to engage me, I would be more than happy to talk with them, work with
them, in terms of trying to put the statistics together.

MS. GREENBERG: Pro bono?

MR. HOUSTON: As a member of this committee, I would be more than happy to
spend a little bit of time to make sure we get the statistics right, or the
queries right.

MR. BLAIR: That is a generous offer.

MR. TANG: I have a question. What do you anticipate the impact of the DOJ
ruling about whether an individual can be prosecuted or not, what is your
interpretation and how do you think that will impact either the complaints or
the resolution of those complaints?

MS. MC ANDREW: I am not sure that it will have any impact in terms of the
complaints that we are receiving. I think the referral percentage was not that
— the criminal area was not a large proportion of those claims in any event.
So, I am not sure that that is going to have much impact in terms of what OCR
is seeing.

In a sense, I think that, because of the peculiar relationship between
OCR’s civil jurisdiction and the justice’s criminal jurisdiction, that their
clarification that that also — the criminal jurisdiction is also limited to
actions against covered entities.

We will push some types of complaints back over strictly into the civil
arena. I think, though, they have made clear that, although it is — I mean,
the statutory interpretation is that both jurisdictions look to covered
entities as the actor for both sets of sanctions, that this is not — that
individuals can still, in many ways, still be culpable, and subject to criminal
sanctions. Under HIPAA in terms of, however, a corporate entity, it falls out
in terms of individual responsibility.

MR. COHN: Sue, can you get closer to the microphone? I think I am hearing
most of what you are saying.

MS. MC ANDREW: In many of the criminal cases that have been referred, I
think people need to remember that there are other kinds of criminal statutes
besides HIPAA that would apply to many of those actions.

I think identity theft or just general theft or fraud statutes may well
continue to implicate some of the individual bad actors.

MR. ROTHSTEIN: Sue, I could be wrong, but I don’t recall your mentioning in
the past that minimum necessary was the source of the complaints.

Maybe it is something that the level has increased that you have noted. I
am wondering whether you could characterize those complaints for us and,
assuming no — because it is such a broad area — I was wondering whether you
could just pull out those complaints and have someone take a look at it.

Our subcommittee on privacy and confidentiality is planning to hold
hearings in the fall on minimum necessary, and it would be very valuable to us
if we could have a better sense of the nature of those complaints that you have
been receiving.

MS. MC ANDREW: I think it really has always been the fourth major area of
complaints for some time. So, it is not that it is new or increasing.

I can check the numbers to see if it has — I don’t think it has
necessarily spiked more recently. The only thing that I recall off hand in
terms of the characterization of those kinds of complaints — and we can have
someone look into that for the committee — is that the — it came up a lot in
the context of incidental uses and disclosures, where there may have been a
complaint about activity in a waiting area, or someone in line in the pharmacy,
and whether or not the disclosure was properly within our permission for an
incidental use and disclosure, which is conditioned on having observed minimum
necessary standards and appropriate safeguards with respect to the underlying
disclosures.

For instance, if someone complained that a receptionist was speaking in too
loud a voice and was revealing their health information in an area that wasn’t
sufficiently private, the complaint would be categorized as potentially — lack
of safeguards and potentially minimum necessary.

MR. ROTHSTEIN: So, you don’t have a separate category for violations of the
incidental disclosure. They would be captured under minimum necessary.

MS. MC ANDREW: I think it is likely those would be — the issues would
break out into a possible impermissible use and disclosure, a possible
violation of minimum necessary, a possible violation of safeguards.

MR. ROTHSTEIN: That is helpful, and we would very much appreciate any
breakdown you could give us.

MR. BLAIR: We have Bob Hungate, and then Harry Reynolds and Jeff Blair, and
then we are going to need to move into the next area.

MR. HUNGATE: Susan, maybe you can help me with an answer that I would like
to be able to give. I tell people that I have a little involvement with HIPAA,
and I immediately get all these daggers thrown in my direction.

It is my feeling that, as we have moved from paper processing into this
more electronic world, we have given a lot more visibility to complaints.

So, when you hear a number of 13,600, that sounds like a lot of complaints.
If you thought about the total number of transactions that went on, it is a
very small percentage.

Do we have any feeling for what the real base is that this percentage
relates to? Is there any way of really saying what the relative significance of
this number is? I think it is very, very small, the percentage of events.

MS. MC ANDREW: I think it is small relative to the millions of providers
and the counts that we made there, and the thousands of health plans, or
hundreds of thousands of health plans that are out there.

So, compared to the potential universe of just entities that are potential
covered entities, the number is not that great.

You magnify that by the number of transactions that any doctor, pharmacy or
health plan engages in, in any given day, and that further would magnify it.

We certainly have not seen to date any kind of core repeat offenders. So,
most of these complaints are against the provider A and then fixes that and you
don’t hear back anything further about that provider. Other than a few, for
instance, pharmacy chains, there is not a lot of repeat complaints.

MR. REYNOLDS: I want to play off John’s continuous question, which we all
agree with, but I think it might be perceived that this is really needed just
for the committee.

I think, more important, what we found in transactions in code sets, CMS
has been very, very open in their communication and willingness to share the
information and what is going on, and that has allowed the industry to learn.

So, the 13,000 complaints, then, get dealt with, with individual
institutions and they learn. There is no learning out there on how to deal with
the privacy of significance. It is everybody interpreted it and then they went
and did their thing.

I think what is more important with this information getting on the street
is that it will be a way for institutions to learn and prove themselves.

I think every institution that implemented this really wants to do it. They
have spent a lot of effort and time, and they also want to learn, as to where
they might have thought of it differently or, whoops, that is not what
everybody meant it to be. I think that is really going to be the ground swell
positive of the report, not making John be quiet.

MR. HOUSTON: That will shut me up.

MS. MC ANDREW: I would certainly agree on both points. One, what we have
found through our complaint process is entities are very cooperative, and they
really want to do the right thing and resolve the complaints and get to yes.

So, I think that has contributed to our ability to have closed as many
complaints as we have had, is based on the cooperation of entities to do the
right thing.

We certainly also agree that there is a lot of good information that will
inform policy as well as practice in those complaints, not only the closures,
but some of the open complaints.

We have had an interest in being able to tease out that data and find a way
of communicating it in a useful manner, and it helps, though, I will say, to
have the committee’s nudge to keep that in front of us as we try to sort
through all of the priorities that we are dealing with on a day to day basis.

MR. HOUSTON: I will be happy to continue to ask the question.

MS. MC ANDREW: I look forward to that every time I come here.

MR. COHN: Jeff, I think you have the last question in this session.

MR. BLAIR: Thank you. Susan, you have had a difficult job to do with
respect to these things, and thank you very much for keeping us updated on the
status of the legal complaints.

You just mentioned that there is a new entity that is now going to be
available, which is going to be responsible for education and outreach.

I think you mentioned, I think I heard you say that that would be to the
public at large. Could you tell me what the purpose or the message is?

I think it is a good thing. I just want to make sure that I understand the
purpose and the message and the scope of reaching out to the public, to try to
help the public understand that there is something that has been done to
protect the privacy of their personal health care information.

The only survey that I know that tried to measure public trust in having
their health care information form compare to the value of electronic health
records seemed to indicate that the public at large was divided, almost half in
half, which I think is a major concern to us moving forward to transform health
care into the information age, if we cannot significantly increase public trust
that their health care information is being protected. So, can you tell me a
little bit more about the outreach and education that is being planned?

MS. MC ANDREW: I just would clarify for you, Jeff, that what I was
announcing is the fact that we now have Patrick Hadley joining the OCR team to
lead that effort.

That additional resource will allow us to pay specific attention to shaping
the message going forward, not only for the public at large, but also how we
communicate and what we need to communicate to the various industry sectors
that are covered and have to comply with the rule.

I would hasten to mention also that this is Patrick’s first week, and Simon
had promised to hold all hard questions until perhaps our next meeting.

So, I would defer your question until that time, where we may well have a
report for you about what those priorities are.

MR. COHN: Susan, thank you for that very deft handling of that last
question. We don’t want to scare him away since he is just starting.

I want to thank all three of you. This has been a very interesting
conversation. I do want to apologize to committee members because of the time
frames. My job is to keep everything on time, or close to it, anyway.

I am reminded, in September, we will provide more time for this particular
session, so that we can really spend some time talking through some of the
issues.

I think we are all a little frustrated that there really was not enough
time to really get into much here. So, we will just make sure that we start
adding more time to this starting in September.

Having said that, we are going to move on to the next topic, which is an
update on the Board of Scientific Counselors, and Ed Sondik, welcome, we are
pleased to have you, and June, I think we have already welcomed you both as the
liaison and to give us the briefing. So, thank you for joining us.

Agenda Item: Update: NCHS Board of Scientific
Advisors.

MR. SONDIK: Thank you. I have the very pleasant task today of introducing
the chair of the Board of Scientific Counselors of NCHS.

I am not sure I have met all of you, but I am Ed Sondik of the National
Center for Health Statistics, and now we have met.

When we have talked here before, and I have updated you on activities in
NCHS, we talk about the roles of the National Committee on Vital and Health
Statistics, and the NCHS Board of Scientific Counselors.

Our goal is to make these two organizations complementary and close to one
another, and I am very pleased that Dr. Cohn attended the last meeting of the
board of scientific counselors and Dr. O’Neill is here, and we are both going
to be attending the meeting later this summer, the executive subcommittee.

I think I am very pleased about this because I think it puts us headed in
the right direction. Then I would like to make one other comment, actually,
just before we break, if I could, very briefly.

I would like to introduce Dr. O’Neill, who is the Wallman professor of
economics and finance at the Baruch College, the City University of New York.

I know I mentioned this before, but I will just emphasize it again. When
this board of scientific counselors was created, one of the changes in a
proposed roster that was made here in the department was a very strong
suggestion that the roster include people with an economics and health
economics background.

That turns out to have been, I think, an exactly right move. It has been
very useful to our discussions, and I think it has added a perspective to NCHS,
while we report data on health economics, our actual direct involvement with
that, our involvement with the health economics community has not been as
strong as it could be.

So, we have changed that. In fact, there is a major meeting taking place in
a couple of weeks from now, where we will be — a health economics meeting —
where we will be fully represented, I am happy to say, and we will be
discussing what NCHS and the data that we have can do to help health economics.
So, with that, Dr. O’Neill.

MS. O’NEILL: Thank you, Ed. I, too, would like to thank Dr. Cohn for
attending our BSC meeting. I think it was helpful in forging closer
relationships.

I also would like to thank Vicky Mays, who has attended our meetings from
the inception, and her participation, we have also really appreciated that.

Aldona Robbins was our representative to the National Center for Vital and
Health Statistics and Aldona has now transited off the board.

We have staggered appointments and hers happened to come up, but we will be
identifying a new liaison to the NCVHS.

Now, in terms of BSC activity, I will very briefly summarize. We haven’t
been around long enough to be reinventing ourselves. We have been trying to
invent ourselves.

It is always a difficult task for a new group that is not quite sure how
you can be useful, and we spent really the initial meetings — I guess we have
had — when did we start, 2003 — so, we haven’t had that many meetings —
acquainting ourselves with the national center.

I think everybody on the board of scientific counselors has had familiarity
in one way or another, but we never really knew about all of the activities
that go on at the national center, because they are large.

The health statistics have become really a vast statistical enterprise, and
given the importance of health generally in the economy, that was bound to
happen.

At any rate, so our initial discussion was sort of finding out what was
going on, and taking up some issues that came up along the way.

One was the obesity issue which was, I guess, to some extent an
embarrassment of the data being used initially by a government official in a
way that turned out to be not correct.

You know, thinking about this particular episode, I think is useful as a
way of, how does information get spread around.

It is one thing for a reporter to say something that turns out not to be
correct, but for an official to make a fairly dramatic statement that turns out
to be not correct, is somewhat more — and the issue is still percolating.

I think the current issue of Forbes Magazine has an article bringing it up
and rehashing it again, and interpreting it as an effort by CDC to get more
funding by coming out with a dramatic announcement.

So, the issue is by no means dead, and I guess that is something that both
we and the NCVHS should be sort of thinking about, trying to — I think just
the episode in itself is going to have a good effect on announcements being
checked carefully or things that are written in prominent places being given
careful checking out.

We have recently embarked on what we expect to be sort of a major portion
of our work as scientific counselors. We should be applying scientific
standards to reviewing the various activities and programs in the national
center.

We are beginning to do that. We are starting first with vital statistics,
and the mortality component, which seems to be more self contained, as a first
excursion into doing an evaluation.

It would be one that is sufficiently contained that we felt we would be
able to handle it, and learn from our experience doing this.

At our last meeting, we began — we developed a protocol way of evaluating
programs, and we expect at the next meeting to begin this evaluation and to
appoint reviewers, which I will come up with in a minute.

Now, these would involve an external board of reviewers with expertise in
the particular field, who are representative of important users.

We will probably have three for the mortality, for the vital statistics on
mortality. We would be happy — we haven’t yet appointed these reviewers, but
would be happy if anyone had suggestions for someone who is an expert in
mortality vital statistics, who would be a good reviewer.

Now, the particular protocol that we developed, we are looking at three
dimensions of the program — program activities, the information product. The
second is the capacity resources of the center for dealing with it, and the
third dimension is the efforts to improve.

Within each of these dimensions, we will ask — the review panel will be
asked to address three questions. The first is the current status, where are we
now, what is the program doing.

The second one is quality, which may be a really important one, is how good
is what we have been doing, are doing, with this, in terms of the program.

The last one is responsiveness; to what extent are we meeting the needs of
the users. Now, during the summer, we hope to get this underway, so that at our
September meeting we may be able to get a preliminary report of the reviewers
and, if all goes according to plan.

Then we will continue from there for a final report, and perhaps start with
another review. So, that will be a large chunk of what we are doing.

I guess those are sort of — we have also been concerned, generally
speaking, with the resources available for health statistics, and how we might
impact on that.

From my experience with government statistics before with the budget, the
easiest thing to cut during a time of budget crunch are data and basic
research, but data in particular because it really doesn’t have a lobby group
out there, or lobby groups, that can effectively lobby for resources.

It is the public as a whole, and they can’t come to congress. In fact, the
public as a whole probably isn’t really quite aware of the use of statistics or
the importance of statistics. It is not something that the average person deals
with.

Of course, there are users and, to some extent, they are organized, but
professional associations typically don’t like to lobby and really can’t be
counted on.

So, it is an issue. We, as a committee, that might be something that we
would think about, if we felt that resources seem to be short changed, because
the health statistics needs are growing. They are not shrinking.

It is important, and that might be something that we could do, together
with the NCVHS. That might be one thing. At any rate, are there any questions
that I might be able to answer?

MR. SONDIK: I would direct the board to I guess it is tab three, where the
roster of members of the board of scientific counselors is contained.

I would say, just related to resources, I think it relates actually to the
next agenda item right after the break, in that one of the ways that the board
of scientific counselors, in addition to the detailed review of what we do and
how we do it, that one of the ways that the board can be helpful to us, as well
as NCVHS, is in helping us to make trade offs.

The agenda being proposed in the next report, I think, is an important one.
I don’t think it is overly ambitious, actually. I think it needs to be done.

Given the reality that June just mentioned, of the budget, it means that
there are trade offs that we have to make, and both of these organizations can
be very helpful to us in helping us determine how to make — giving us advice
on how to make these trade offs.

Just one other point about the obesity issue that was mentioned, what I
would say to that is science marches on.

It is extremely important in NCHS that we have a strong science component,
and I must say it is one that I am very proud of and, in discussions with Dr.
Gerberding very recently, I must say she is also very proud of that component
as well.

We continue to use our resources in new ways, and to try to get at the
issues that are really of critical importance to policy makers.

It is science, and things happen in science in which new results may look
very different when compared to older results. That is why we do that in a
public forum, in fact, to debate these issues.

MR. COHN: Just speaking as an individual consumer as well as everything
else, I want to thank you for the publication of your results. That is a
personal view.

MR. STEUERLE: This is a question for you, and I guess it is a question for
Simon, because I have posed the same question to him.

In so many areas of life I think our principle problems often come, not
from knowing what to do but not doing it, but not knowing what we don’t know.

In the area of health statistics, it seems to me that all of us probably
around this table have some area where we really think there is some statistic
that must be gathered, but it is simply not.

You heard a very minor example just a second ago with respect to more
broadly the issues of the cost of HIPAA and how these privacy things are
playing out.

Are data being gathered there? I have a complaint that nobody could even
tell me, with health costs going up by eight percent a year, who is being paid
what. Do we have eight percent more providers, or what providers are being paid
more? We don’t even have that statistic.

You will hear later some concerns about the populations subcommittee about
data that we are not gathering on the allocation for health care.

I wonder, between our two committees, I mean, who sits down and actually
sits down and not just sort of looks at particular pieces of data and examines
how to refine them and inform them, but I really wonder if we have some
organized way to ask these questions, at a crucial level, what data aren’t
being gathered, so that your committee or our committee can actually make those
recommendations to say, here are some vital pieces of information that are
missing.

This is an organizational structural issue, but it has bothered me. I
haven’t quite figured it out, maybe just because I am naive.

MS. O’NEILL: That is a really good idea, I think. It is possible that,
within each of the existing programs — and the third component of these
reviews is what should be done to improve — and one of the items would be data
that are not collected.

It may be that there is no program that could encompass certain kinds of
information, and I think that would be a useful thing to do, but we should talk
about that.

MR. SONDIK: I think it is an excellent suggestion. We have actually formal
ways of doing this within the center for the various components, but in a
sense, it is component specific, program specific.

We also have a more overall approach when Health U.S., which actually
conceivably could report some of that information, that we would work with our
colleagues in other agencies to develop.

It is conceivable it could be in Health U.S., and there is a formal process
for the review of that, but it strikes me that it would be very worthwhile to
discuss this, perhaps at another meeting, as to what mechanisms we actually are
using, and how we could be sure that we are asking the question, if you will,
the old Mayor Koch question, how am I doing, that we ask it in the right way
and in the right venues, so that we get the things that — so that we get at
pieces of information, the questions that may not fit the current structure.

MR. COHN: Certainly, Gene, that question makes me very happy that you are
on the population subcommittee, because I think that is one of the focuses of
that subcommittee.

MR. STEINWACHS: I was looking for an update on the how the reorganization
is going on in CDC, and affecting NCHS, and also I guess the question of
whether or not the board of scientific counselors, if that is one of the things
they are looking at, too, is the organizational positioning and the
interrelationships between the center and the new structures.

MR. SONDIK: I am happy to answer, very briefly, having just returned from
Atlanta hours ago. Actually, the board of scientific counselors has heard a
great deal about this.

I have been wearing two hats over the last eight months or so. I have been
the acting co-head, really, of the coordinating center in which NCHS now is one
of the three components, along with two new centers, one on health marketing
and the other on health informatics.

We have been standing up these centers, as I think you have heard before,
and looking for heads for them, and I am happy to say, I think we are getting
— I know we are getting — close to the heads of these two new centers.

So far, I think this has been very positive for NCHS. Our budget has not
been affected in any way. We continue to have very strong support.

For example, in 2006, the budget for CDC is projected to go down, but the
budget for NCHS is flat. So, you have to look at that as positive. It is not
what I would like, but it is positive.

Given how much the CDC budget is projected to go down, it actually is a
very positive statement. I have a number of discussions going on that relate to
informatics and NCHS, which I think is very important.

I talked to Dr. Brailer, for example, and his relationship between
informatics and CDC and what it is that we are doing in NCHS, and I think that
is all very positive.

So, I would say so far I think things are fine. Our mission, if anything,
is stronger because of the new goal structure for CDC that is being developed.

It is very clear that we have to have an independent arm that will tell us
how well we are doing — we being CDC, but also the country is doing toward
these goals.

The goals, I believe, are going to relate very much to the health people. I
think they will perhaps be formulated in a little bit different way, but
clearly they are not going to go off in any brand new direction.

I think things are really coming along. What we talk about now is the new
CDC as opposed to the futures initiative, because all of the structures are —
well, essentially, they have all been put in place now.

Now it is a matter of doing business with a new budget structure which is
aimed, by the way, at guaranteeing that our program will not be tapped to
death, as happens in federal programs, and other programs, for that matter.

The program funds are now very explicitly outlined as opposed to before, in
which they were intermingled, if you will, with the business services and other
funds related to leadership. This breaks them out. So, I think we are doing
fine.

MR. COHN: Great.

MR. SONDIK: Just before we break —

MR. COHN: Carol, real quick, did you have a quick focused question?

MS. MC CALL: It is actually more a comment, and I will be very brief. Just
a follow on to the question asked earlier by Eugene, which really had to do
with some themes that we discussed at our quality summit.

We had a two-day summit earlier, actually, this month, and one of the
things that we found in this area of not even we don’t know what we don’t know,
that will always be the case and there will always be new discoveries.

We discussed at length the need for, and the desire for, mechanisms that
actually explicitly and formally transfer the new knowledge and share it as it
is, in fact, discovered, that that becomes a very important part of the whole
HIT effort and a lot of the statistical efforts.

It is very much related to standards, to your point, and in a scientific
world, standards will emerge, things will change. They won’t necessarily be
gradual.

So, as we put forth our work plan, we are very interested in mechanisms
that are in place today, and how they are working and what seems to work well
and what doesn’t work well and kind of who is doing what out there, as we move
forward in our own work plans and work toward some recommendations.

MR. COHN: Thank you for the comment, well said. .Ed, I am going to give you
about — I hope you are making a brief final comment.

MR. SONDIK: Fifteen seconds. Marjorie, did you mention the publication of
this volume?

MS. GREENBERG: I didn’t.

MR. SONDIK: This volume called Health Statistics, Shaping Policy and
Practice to Improve the Population’s Health, has just come out, edited by Dan
Friedman, former member of the NCVHS, Ed Hunter, who lives down the hall here
and at NCHS, and a former CDC-er, Gib Parrish.

This grew out of the work of this body, and the data council, and I am
really pleased. You all should feel like new parents, in a way.

It has a stellar set of authors here, including Ms. Greenberg. We hope that
it really will help with the foundations for health statistics, and will really
represent the academic, if you will, foundations for this and be very, very
useful to us as we move this enterprise and profession along. So,
congratulations to you all. If you didn’t know that it was coming, here it is.

MS. GREENBERG: A number of the authors are either former NCVHS members or
staff to the NCVHS, possibly as much as half, or people who have presented to
the NCVHS. We will plan to order copies for all the members.

MR. COHN: My congratulations to all. It looks like a wonderful book.

MS. GREENBERG: Just plan to read it on the way back to San Francisco.

MR. COHN: Exactly. What I want to do is give everyone a break. We are
running, as you can tell, a little bit late, despite my best efforts here. We
will take a 10-minute break and come back at 11:00 o’clock.

[Brief recess.]

MR. COHN: The next session really deals with two reports. The first piece
is the population report, eliminating health disparities, which is an action
item for this committee meeting.

I just want to welcome Vicky Mays back. Thank you so much for being here,
one of our former members, and I guess now a consultant working on the project,
but really, one of our former committee members, and Don Steinwachs.

Also, after we are finished with that discussion, we will spend a couple of
minutes talking about the NCVHS 2003-2004 report.

Don, I think I will hand it over to you and let you sort of give some
people some high level perspectives on this, and then we will talk more about
it.

Agenda Item: Populations Report – Eliminating
Health Disparities.

MR. STEINWACHS: Thank you very much. I appreciate all the input of all the
members of the whole committee, and very much the hard work of the populations
subcommittee.

I told Vicky that she ought to feel like a mother that she brought forth
this — we figure it is just a four year gestation period. So, not bad.

MS. MAYS: Not even elephants gestate that long.

MR. STEINWACHS: Let me just give you this high level overview, and then we
will open it up for comments, and I am hoping that we are very close to closure
on this. I know that there is some specific word smithing and so on, and we
welcome very much all comments.

The first hearings by the population subcommittee actually date back to
June 2001. Then, in 2002, hearings were held that talked about federal issues
and the federal perspective on the capture of race and ethnicity and the use of
the data.

Also, a hearing was held in September 2002 in Denver, focusing on American
Indians and the capture of information that could be useful in looking at
health and health status issues for American Indians.

November 2002 there was a hearing in Philadelphia on the state needs for
race and ethnicity information, and some of the issues that states face in
trying to develop useful information, and this got into geocoding, and issues
of geography, as well as the capture and access and use of data.

In May 2003, and in November 2003, hearings were held that were
specifically concerned with the capture of information on health for Native
Hawaiians and other Pacific Islanders, and part of this got into the
recognition of how heterogeneous these groups are, and some of the very
specific challenges of having data that are thick enough, and ones for which
privacy doesn’t really become an issue, that they could use in order to
understand health issues, and whether or not health is improving.

All of that is brought together in this report which has two major
recommendations. As you have seen, one recommendation specifically talks to
enhancing the quality, reliability and completeness of data collection and data
integration on race, ethnicity and linguistic subpopulations in the United
States.

The second recommendation talks to improving the infrastructure so that it
is possible for people to get the maximum use and access to the data and that
there are ways to disseminate the information so that it maximally gets to
users.

Within this framework of the two recommendations, we recognize there is
some overlap when you talk about the issues of quality integration and you talk
about infrastructure.

Our foot forward, based on the hearings and the considerations of the
subcommittee is a series of strategies recommended that include strategies that
talk to what can be done within the department, between the department and
other government agencies, the federal government and the states, and with the
private sector.

So, these strategies really are quite far reaching. We have tried to make
them as specific as possible, so that they provide useful guidance and, again,
if you look at the appendix and the materials that are on the web site,
actually, they are all very well anchored within the context of the hearings
and what came forward to the committee around all the special populations and
both federal and state needs in this area. So, let me stop with that and open
it up for comments.

MR. COHN: Let me start by just sort of giving everybody how we are going to
discuss this. This is not an occasion for word smithing at this point.

I think whatever we pass or decide to vote on will, of course, be subject
to further word smithing coming forward.

This is a time, if people have conceptual issues or conceptual problems
with the document, things that are beyond word smithing or questionable in
their significance, I want to assure you if you don’t like a word, or you think
a sentence is off or it needs a paragraph placed or a comma, we can handle that
off line. So, with that, we will open the floor up for comments.

MR. TANG: I congratulate the subcommittee for a really, really fine job and
fine report. It was a good read. When I think about this and reflect on what
you said, I see four categories in terms of gathering this data.

One is how to ask for it. Another is how to collect it and store it in a
way that usable. A third is how to interpret it and a fourth is how to protect
it.

I think you addressed all four of those categories in the report. The only
thing I would submit for your consideration is to emphasize a little more on
one and three, which is the asking problem and the protecting problem.

The asking problem, it seems like — and you called it out in terms of ways
to increase self reporting — it seems like that is a major obstacle.

Clearly, we have to deal with the information and the granularity and the
specificity and the standardization that you are requesting, but how to get
people to self report, I think you can see both ends of the spectrum, people
who are afraid of being discriminated again, as well as people who don’t even
want it to be considered at all even if it could favorably enhance their chance
as some thing, and then there is the middle.

It seems like that is a major barrier, and I don’t know to what extent you
can explicitly ask for studies to look at how to encourage those things. You
did talk about it, but again, it is just a matter of emphasis.

Then, on the other side, how do you protect it once you have gotten it,
coded it, and used it, in formulation of health policy, certainly, in the
privacy subcommittee we hear about how other health information is maybe used
and reused in different ways.

It is certainly something that could be of concern to a population, and how
can we work on assuring them that their information is protected, and helping
them understand for what purpose it is going to be used, and for what purposes
it can’t be used, those kinds of things. It is a matter of emphasis.

MR. STEINWACHS: Let me just pick up on that and make sure — we have tried
to address those. I think what you are saying is that there could be a
different kind of emphasis placed on some of these.

At the same time, I guess, we felt we could only go so far based on the
hearings and what we had heard at that point in time, and this really brings
together about three to four years of that.

I am just, I guess, throwing this back to you, and again, this may not be
what you think is the appropriate thing to do.

The points you have made also, it seems to me, play into things that this
population subcommittee might address as it moves on, because this doesn’t end
the issues that relate to race and ethnicity.

This capture, I think, has done just what you said, identified there are
some serious problems, and we talk about people’s willingness to do it.

If it was just — I was hoping — and you can correct me — that if it was
somewhere either in conclusions or executive summary, a little bit of word
smithing, we would very much welcome that.

I was hoping it wasn’t a matter of trying to reshape specific strategies
here at this point, or the overall recommendations.

MS. MAYS: I thought your suggestion is a very good one. It is in there, and
what I hope would be is that someone either like NIH would pick it up as a
research agenda — because we actually suggest it as research.

Also, if the linkages that are suggested here take place, say the linkage
between HHS and the Bureau of Census. The Bureau of Census actually has some
work on this. NCHS actually has dealt with some of these issues in terms of
their studies.

I think that the strategies that have been suggested, that if they were to
be put into place, would actually answer what some of your concerns are.

I agree, probably the two biggest issues are if people will tell you their
race and ethnicity, and then what do we need to do to assure them that they are
not going to be treated differently because we have that piece of information.

MR. STEINWACHS: At the very least.

MR. COHN: I guess I should ask, Paul, I am seeing you nodding your head.
Does that mean what they have said is sufficient, or does there need to be, at
this point, some changes to the document?

MR. TANG: Yes, and again, it wasn’t something that was not in there. It is
a matter of emphasis and perhaps a way of diffusing questions that could be
raised as you read through this the first time. I think that is more my point.

MR. COHN: Maybe there is a way of framing the executive summary.

MR. STEINWACHS: Anita and I were whispering here. A little word smithing, I
think, will do what Paul is suggesting.

MR. COHN: Paul, thank you. I think, once again, it might help improve the
executive summary, which is really the place where this all gets set up.

MR. VIGILANTE: This is, by no means, criticism of the report, because I am
on the committee and I wouldn’t criticize it.

This is something that is in the report that I just wanted to bring into
somewhat bolder relief in light of Jean’s comments, actually, about where we
should be looking for things where we think we may not know enough.

The report, one of the main themes in the report, or suggested strategies,
is to produce greater linkages between different kinds of data sets.

It does recommend a linkage to the Department of Education. This is one
that I would just like to, while Dr. Sondik is here, to kind of pull out a
little bit.

As many people sitting here know, one of the best predictors of the health
status of a population is their highest level of educational attainment, on
average.

The strong association, some have suggested that there may be even some
causality associated with actual education in achieving health status, and have
posited that one way to improve health status is to actually just increase, not
the health intervention, but increasing level of educational attainment.

By and large, the same populations who have health disparities have
educational disparities. So, I think that particular linkage is extremely
important, both in the government space, to be linking health data and surveys
with educational data and surveys, and also in the academic environment.

The more we can link those, the more I think we can identify strategies for
improving health disparities that are somewhat outside the health bucket, and
health people don’t necessarily always think of them.

You go to a baker, you get bread. You go to a health person, you get a
health solution like access. Really, the problem is more holistic than that.

By incorporating educational interventions in our unending quest to improve
or mitigate against health disparities, I think, is an important national
agenda. One person’s point of view.

MR. COHN: Maybe I should let Don or Vicky try to respond. I am trying to
see whether it is in there.

MR. VIGILANTE: It is in here.

MR. STEINWACHS: I think it is in here. Kevin is putting some additional
emphasis on it. Very clearly you see in this report that we ought to be doing
linkages that get out of just health, and you could think of linkage as labor,
education and other areas.

MS. MAYS: I would just say, I think we have listed several different
linkages that could benefit, and I think what Kevin is doing is emphasizing the
one with education.

I think, again, this is like one of these wonderful moments in terms of
having Dr. Sondik here, because it is not just work to send to the Secretary,
but it is the emphasis that you see in other areas, like the work of NCHS.

At least when I was on the committee, we would get U.S. Health. I think you
said earlier that may be a place that, when this comes, to actually see if any
of those types of analyses are there, and to send it back and suggest, if they
are not, to do them.

MR.COHN: Well said.

MS. GREENBERG: I just can’t resist comment on this as sort of the committee
historian around the table, not just to give you a little history lesson, but
also to think about future agendas.

I believe it was in 1992 that this committee recommended that there was
essentially a lack of any kind of socioeconomic variable in the uniform data
sets that were used for administrative data, hospital and ambulatory, et
cetera, and that looking at what the typical ones are — and of course those
are discussed in the report — the one that is a high predictor and perhaps the
most feasible to collect would be highest attainment of education, seeing that
it was unlikely that you would start collecting income or even — with all the
problems with coding — occupation, et cetera.

That, I don’t think that recommendation was ever adopted in these
administrative data sets and, of course, one solution is these linkages, if
they are possible.

Also, now that we are moving more into electronic health records and
looking at the sort of core data you might want in a personal health record and
an electronic health record for quality, et cetera, I think it is worth
revisiting some of those earlier recommendations, because the committee has a
long history of feeling that that would be a positive thing.

Obviously, we have moved beyond that to socioeconomic position, et cetera,
and there is a whole lot more to collect in surveys.

When you get down to administrative data, or when you are very limited in
what you can collect not in a survey environment, then it is a good thing to
revisit.

MR. COHN: That is a comment; right?

MS. GREENBERG: I think it could be on the agenda of several subcommittees
in the future.

MR. COHN: I just wanted to clarify. Ed, I think you had a question or
comment.

MR. SONDIK: Just a comment related to these. I may be missing it in the
report, but while there is discussion of linkage, it comes across as linkage
within the department, as opposed to the point that you were making, at least
as I interpreted it, that there could well be data sources outside.

Then, of course, there is linkage and linkage. One of the real challenges
is in linking surveys in which the respondents aren’t the same, but that is
just a challenge. That is all that is. Clearly, it can be done.

In fact, in one survey, the survey on family growth, the last production of
that survey had an allied data set. I always blank on the name of it, that was
a data set that gave information on the locale, on resources.

MS. GREENBERG: Oh, the HRSA data set, the ARIAS?

MR. SONDIK: They particularized it so that it could actually be used with
the data that was actually collected in the national survey on family growth.

I thought that was a terrific step forward. I can’t tell you at this point
exactly how it has been used, but I think it is very important, because
particularly in that survey, it gave information on the educational facilities,
the health facilities, and a variety of other things that would conceivably be
important as you look at these patterns.

My point is, I think you could make a stronger point in here about linkage
on both levels, outside of the department and the challenge of it, which fits
definitely within the structure, and the fact that there is linkage and
linkage.

We ought to really be pursuing how to make the most of the data that does
exist. I am convinced we don’t always have to go out and collect new data. It
would be ideal, but clearly we can’t do that.

MR. STEINWACHS: We very much agree with you. We tried to capture that, but
I think you are saying it could be strengthened.

On the bottom of page 15, top of page 16, where we talk somewhat about
socioeconomic status, and variables, as well as others that could be found in
the Census, the American community survey, current population surveys, and try
to begin to talk about linkage to put in some of those. I think what you are
saying is this could be strengthened.

MR. SONDIK: I think it would add another flavor to it, to mention surveys
that are not the census activities.

When I think of the census, I think of something that is very broad brush.
When I think of something from the Department of Education, for example, of
Justice or whatever it might be, I think more of specific topics, if you will,
thank demographics.

MR. STEINWACHS: Let me just finish. Maybe, I think, again, we could make it
clearer, but we also talk about surveys also should capture information on a
range of contextual variables found to be explanatory, health differences such
as social support, social networks, social cohesion, community involvement,
perceived financial burdens, differences in health status, foreign born, U.S.
born individuals, and so on. Maybe what we can do is take this and —

MR. SONDIK: I though the way Kevin said it was compelling. I think the way
it is written is less so.

MR. SONDIK: We can do some editing here, word smithing.

MS. MAYS: Probably the word smithing is linkage. I think the way that you
said it allows there to be an emphasis of, it is not just across agencies, but
the linkages that have nothing to do with collecting extra data, but have to do
with facilitating the ability to be able to do linkages across surveys. It is
very friendly word smithing. So, I think it is fine.

MR. COHN: Vicky, I guess I would ask on this one, do you feel that that
information is already in here?

MS. MAYS: Again, I think it is one of those where you put another sentence
that is explanatory to the front of it, and you give an example of a couple of
data sets.

MR. COHN: Okay, well said.

MR. STEUERLE: I was just going to say, just follow up on that, maybe we
should just put in some parentheses, a couple, two or three examples that
people might suggest to you.

One of my favorites is, I have been involved with the linkage of the survey
of income program participation with social security records, and we have been
able to figure out the effects of mortality on benefits.

It is not a pure health issue, but health is there, but we haven’t linked
to the medicare records. It is an ideal example of something that would give us
a lot of information.

It has education status, it has lifetime earnings, and if we could link it
to the medicare records, we would have at least some health outcomes, although
we wouldn’t get the younger population. We could give three or four examples
like that. I think it might make clear that there are different types of
linkages.

MS. MC CALL: Very quickly, I think that the structure of the strategies and
the recommendations are going to be well suited to enhance this.

If you look at essentially one-A and look down at what is listed there in
one through eight and, in particular, in probably the first four, it is really
about conferences to get people together so that best practices are shared.

Maybe just adding some specific recommendations, if you look at number
four, this is really about mechanisms, to work not only with other agencies, we
could broaden that, and it is also on practices, not only on methods for
collecting, but also on classifying, and cross walks between one type of
classification in an existing data asset and another, so that they can become
linked and, therefore, looked at and understood in combination.

So, if we just enhance them in those specific ways, maybe again with some
specific examples of what we mean, I think that the way that this is laid out
can naturally be enhanced to call forth those types of partnerships and those
types of linkages.

MS. CAIN: I had just wanted to comment that NIH has been taking that
approach in several different areas for several years, and a couple of
examples.

We are collaborating now on the ECLES B early childhood longitudinal survey
birth cohort, which is a Department of Education survey, had very little health
information in it, and NIH has sponsored the collection of health information.

Another one that we have, many years ago, co-sponsored were the Bureau of
Labor Statistics surveys, national longitudinal surveys.

Again, at that point, there was very little health information. We
supplemented it, and have been long-term sponsors of those to include health
information.

MR. COHN: Thank you. Were there any hands? That is how it is with reports
sometimes. After so much, it is hard to focus on them.

I want to just sort of comment from my own reading of this. Obviously,
there is word smithing that needs to be done, but overall, I think it is an
excellent report, and I think it has come a very long way and has gotten very
well focused.

So, what I am hearing is probably that last percent here that we are sort
of dealing with at this point, as well as recognizing that there are other
things that are beyond the scope of this document.

I guess we should ask, I am hearing things that are probably — Don and
Vicky, give me your sense. It sounds like a little bit more than word smithing,
what we are describing, but are these things that we have just talked about
things that could be worked on in the subcommittee and brought back, just to
show how those changes would be incorporated?

MS. GREENBERG: Do you mean tomorrow?

MR. COHN: That is what I am wondering, or should we take a different path
on this one, or if you feel they really are word smithing, then we can sort of
deal with them in another method.

MR. STEINWACHS: I guess I mainly saw it as word smithing.

MR. COHN: If, indeed, it is word smithing, one option that we have is to
actually pass this, refer the changes to the executive subcommittee, let them
do the final fiddling and then we can be done with it. I see people nodding
their heads at the second one? Jeff, please.

MR. BLAIR: This draft letter has been worked on for quite a long time, and
I think that everyone who has read it feels like it really is done very well.

Could I express my sense that, even though there might be some word
smithing, that we would make every effort to try to get the full committee
approval for this at this session, so that it is not deferred another three or
four months.

MR. COHN: Jeff, am I hearing this as a motion to pass?

MR. BLAIR: No, maybe what I was expressing was more of maybe a strategy,
that if there is — it is that idea of let’s not let the perfect be the enemy
of the good. I think this is already very good.

MR. COHN: Okay. Jeff, I think you may have derailed us a bit, because I
think what we were moving toward was the idea of potentially bringing this
forward to a vote at this point, with the idea that the executive subcommittee
would do further word smithing on it and approve it.

MR. BLAIR: May I withdraw and I apologize?

MR. COHN: That is fine, but if you have an alternative motion, we are happy
to consider that, or make that motion.

MR. BLAIR: I would like to move to approve this draft.

[Motion seconded.]

MR. COHN: With further word smithing to be performed. Is everyone
comfortable with that? I don’t think there will be changes that occur by
tomorrow that are going to make any significant difference in this.

If anything is beyond word smithing or as Kevin described it, emphasizes
something that is already there, it will come back to the full committee.

MR. SCANLON: You mean to the executive committee.

MR. COHN: Well, no, if there is anything that is a substantial change, it
would come back to the full committee. If it is word smithing, an extra
sentence here or there that just emphasizes things, the executive subcommittee
will handle it. Is everyone comfortable with that? Is there a second?

MR. HUNGATE: I second.

MR. COHN: Very well, all those in favor?

[Vote in favor of motion.]

Opposed?

[No voices heard in opposition.]

Extensions?

[No voices heard.]

Well, congratulations.

[Applause.]

MR. STEINWACHS: Let me just add my thanks to staff, because there was
tremendous work, along with Vicky, and we had a writer, Anne, who were working
to bring all this together. So, there was a lot of teamwork.

MR. COHN: Again, the chair and the full committee express great
appreciation to both you and Vicky for your work on this.

MR. STEINWACHS: Simon, I don’t know whether we have time now, but if we
did, the subcommittee would very much welcome suggestions for how we can most
effectively disseminate this report.

At least our sense of the audience — and I think Ed was getting at this —
is the department is important, within the department, but to get outside to
other departments within the federal government to be able to disseminate to
states, to interested groups in the community who might see this as providing
some direction for how they can work with government agencies to better use the
data and get the access that they need, and the ability to analyze and
understand relevant data.

MS. MAYS: I just want to make one request, because it is something that we
heard really clearly in our hearings, particularly with the American Indians,
is that we not just have it in a form that is up on the web, but that we
actually print it up.

One of the comments we got was, especially for a document that will be kind
of this size, that they were just not able at times to rely on technology as
the only way to receive information.

I think if possible, Marjorie, I don’t know whether or not, as reports are,
to have a little executive summary and then the whole report kind of thing, so
that it can actually be mailed out or given to people.

A lot of the people that came are like some of the community groups. If
that is possible, as part of a dissemination strategy, that we heard from our
audience that it would be really useful.

MR. STEINWACHS: Certainly if we could find a way to disseminate it in a
hard copy form that is nicely packaged.

MR. SONDIK: I was just going to say that the committee could certainly send
it to Kathy Walman at the OMB for distribution to the federal statistical
agencies.

She meets regularly with those and chairs the interagency council on
statistical policy. It would, I think, be at a minimum very interesting for
them to see the work of this committee on this topic.

That would disseminate it throughout the federal statistical system. It
could also take another channel — this is obviously up to the Secretary — but
at the cabinet level.

As a product of this committee, you advise the Secretary, and the Secretary
could share it. Certainly by going to the ICSP, it will go to the other
statistical agencies, including Census, the Center for Education Statistics,
and so forth.

MR. COHN: Other thoughts or suggestions?

MS. TRUDEL: I just wanted to follow up on something that Ed said. I am
looking at the Secretary’s 500 day plan, and this report certainly does link up
with the idea of closing the health care gap and eliminating inequalities in
health care. This fits right in here.

MS. GREENBERG: That is a good suggestion for including in the letter of
transmittal.

MR. COHN: Other thoughts? I guess I would sort of pipe in that I know that
NCHS has a users meeting. It may be something to —

MS. GREENBERG: Are we having one in 2006?

MR. SONDIK: Yes, we are.

MS. GREENBERG: We could certainly disseminate it there.

MR. COHN: Things like that, as well as the public health data users group,
which I think you are one of the founding members of, might be a useful place
also to get it out.

MS. GREENBERG: We exhibit at various meetings, like the National
Association of Health Data Organizations, APHA, et cetera.

So, if we can get it reproduced in a hard copy, then we can have some
copies there, and refer people to the web as well.

MR. SONDIK: The data council, of course.

MS. GREENBERG: Of course. The transmittal letter will be to the Secretary
with a cc to the data council. I think, as we have done with other reports, it
would be a good idea to ask Don to present it to the data council, and possibly
bring in Vicky for that as well. Jim isn’t here right now, but we know the
executive secretary of the data council would agree.

MS. MAYS: One more suggestion I would have is that most of the individuals
that came to the hearings — Audrey, am I correct — we have e mails for them.
It might be useful to be able to just send them an e mail telling them of the
availability, and they can either ask for it or go to the web site.

MS. GREENBERG: Who is this?

MS. MAYS: I think we have probably a different group of people who actually
came to the hearings. I mean, we had one of the hearings where we probably had
over 100 people attend, we had other hearings where we had a lot of community
groups attended.

Each time they signed in, they got e mails for them. I think it is like
giving back the report so they can see it.

MS. GREENBERG: Actually, if we reproduce it, we can send copies to all of
those people. We have certainly done that in the past, and I think it would be
appropriate.

MS. MAYS: Thank you.

MR. STEINWACHS: Thank you very much.

MR. COHN: Thank you. Congratulations.

MS. MAYS: Thank everyone for their hard work on this, also the staff. I
also wanted to make sure they were acknowledged in terms of helping bring this
together.

MR. COHN: Now, our next item is the 2003-2004 report.

Agenda Item: NCVHS 2003-2004 Report.

MR. COHN: I am actually divided. I am uncertain of how best to bring this
forward to you. Let me tell you my sort of blunt analysis of it, and then I
need your guidance in terms of how we bring this forward.

I think overall this is very good, but I think the recommendations for HHS
policy research agenda and the looking ahead need some significant redrafting.

MS. GREENBERG: And we need the preface and the forward.

MR. COHN: You need the preface and the forward and probably a picture of
John Lumpkin and you need all of those other things.

I think, given that, I think we will maybe have this be an actual action
item for September, but I think we wanted to get confirmation from all of you
that the first part, which is the great bulk of the document — really goes up
to page 16 — is really fine, which is my assessment at this point, but we do
want to not have to re-discuss that in September if we can avoid it.

MS. GREENBERG: Particularly the subcommittees, we have had some interaction
with you all, obviously to try to make sure that it reflects your
accomplishments and agenda, et cetera.

That would be all the way up to page 16. So, we will — unless we hear
otherwise today, we will assume that it does, and then we need to work on those
last pieces.

MR. COHN: Anybody have any comments on this? Maybe we can talk about the
research and the looking forward.

MR. STEINWACHS: Simon, I would agree. I thought mainly, at least when I was
reading it, the looking forward, I thought, was something that each of the
groups would want to pay some attention to, to make sure that really, certainly
for the populations subcommittee, that is part of it, and I am sure the quality
work group, too, we would like to make sure are in here.

The accomplishments, I thought, were well stated, and the role of
populations in this I thought also came across very nicely.

MR. COHN: Okay, good. Any other comments on the first 16 pages, and then we
can talk about maybe the research and then actually looking forward and then
back to research.

Does anybody have any other comments about the first pages? I thought
standards and security looked well represented, privacy did well, quality I
thought reflected accurately what was going on. The NHII work group, obviously,
was also referenced. I think it is actually very well put.

This actually may be some help that maybe we could ask the population
subcommittee to think about a little bit. Now we are talking about the research
agenda.

I know we had gone from trying to list out every research item in the last
five, six, seven years in any of the documents in here, which didn’t come out.

At least from my view, it didn’t sort of make sense. These were like
bulleted items pulled out of various reports.

MS. GREENBERG: It was out of context.

MR. COHN: It was out of context, and some of them looked sort of very dated
in the recommendations. It is really not what we wanted to talk about.

I guess to me the real question is, I think we are all in favor of a more
robust research agenda relating to HHS information policy, but then the
question is, well, what are we talking about.

I guess I would look maybe to the population subcommittee. Once again, it
is something that is maybe a little different than just reflecting on previous
documents, that isn’t a litany of very specific items, but is more either high
level things that we need to be looking at or whatever.

I am sort of thinking of sort of bullets with a sentence or just bullets or
whatever, either as examples or whatever, that might help finish this off.

The wording in here is really not bad. It is just that it sort of doesn’t
come to a conclusion, as best I can tell, in terms of a research agenda. I
guess maybe if we could get some help, would that be a reasonable request?

MR. STEINWACHS: I am sure we would be happy to do so, certainly.

MR. COHN: Especially with bounding the activity.

MS. GREENBERG: The other thing is, it does strike me that a lot of the
populations letters or reports that are referenced here, I think you picked up
on the recommendations that you thought were the most salient or whatever in
this report now.

I think not only the population subcommittee, but all of the subcommittees
that have put forward recommendations for research in the past need to maybe
periodically revisit those, and see whether this work that they want to do to
try to take this to the next step, or to bring it up again.

The way this all started was a discussion that we had at the executive
subcommittee, and there are very specific recommendations that are made, and
particularly in response to a request from the department or from congress for
recommendations.

Generally, we know what happens to those, or at least to some extent, and
there is a more direct response, but with some of these research
recommendations, which you can’t just implement on a dime, they kind of are out
there in cyber space, and there is not a good sense that they have a home or
that they are responded to.

So, I think that it is hard to capture. I think the language that is here
attempted to capture that to some degree, but I guess I still feel it is
appropriate for the different subcommittees to look back at some of these and
say, is there further work we need to do, first of all, to find out has any of
this research been undertaken and, to the extent that it has, learn more about
what the findings were and, to the extent that it hasn’t, do we want to raise
this again in another venue, so that they don’t die.

MR. COHN: But that is not really a part of this. That is not this report.

MS. GREENBERG: That is not this report, no, and I mean it might be the way
to just deal with it. I think it relates to looking ahead, actually.

MR. COHN: You are right, that may. Obviously, I am thinking of this one at
the level of, we might have privacy or — Jeff, maybe you have some help on
this one.

MR. BLAIR: I don’t know if I have help so much as sort of a basic question.
We have different mechanisms for providing status information, reference
information and other mechanisms for making our recommendations for action.

This report confuses me a little bit, because I have always thought of this
as kind of a status or reference document.

It may be a weak mechanism to make any kind of recommendations and, in this
case, recommendations for a research agenda.

So, if this is a good mechanism to set forth those recommendations, could
somebody — can somebody clarify that, as to why we would be doing those in
this document?

MR. COHN: Jeff, you bring up a point for all of us to ponder.

MS. GREENBERG: Interesting point. We have, in the past, we have used the
annual report as a way to highlight — I remember a special section we did on
socioeconomic, I think, status in one report. So, we have done that. So, there
is some precedent for that.

What you are saying is, this is maybe — I guess I was kind of saying that,
too, although you said it better than I did, that this is maybe not the best
mechanism.

I am thinking that maybe, when we did think about using this mechanism to
try to highlight some of those research recommendations, it maybe wasn’t the
best way to do it.

That is why I was suggesting that another way would be to revisit some of
them and then maybe resurface them as a letter recommendation or something like
that, where they would get more attention than in a document which is primarily
historical, although we do always have something in it about reflecting on not
only the past but also the future.

So, I think I agree with you, that if there are specific recommendations
that have been made in the past and we feel they have languished, this may not
be the best way to revitalize them.

MR. SCANLON: Yes, this is a way to guarantee they will continue to
languish, especially on page 17. I think the other issue is that, you know, in
a way, by trying to highlight them here, it is sort of suggesting that these
have priority over — that these are the only ones, and these have priority
over anything else, and I don’t think that is the case.

I thought we talked about using this as a basis for, if you are serious
about an analytic agenda, that you would use that as the basis for moving
forward.

Some of these, honestly, were not taken up because there was just no
interest. Why would you come forward again, when you probably have some new
ideas now, after a benefit of the year or so. I honestly don’t see the purpose
other than documentation, to highlight these.

MR. BLAIR: Could I then make a suggestion, given the reactions to my first
question. I think maybe the linkage is that, in order to make a compelling case
for investment in research, the information, the historical information in this
report could be helpful.

So, maybe, if we later have a separate recommendation letter, with the
single purpose of setting forth a research agenda, that this report is an
attachment or an appendix to support, and put in context, the need for the
research agenda.

MS. GREENBERG: I know some of the subcommittees right now, like the NHII
work group, are looking at contributions to such a research agenda.

I think Jim makes a good point, that this was kind of an exercise in which
we tried to go back to see what was there. It may serve a purpose for a future
research agenda, but it may not add that much to this report.

MR. HUNGATE: I want to try a different tack on the committee, and think
about what I regard as a centrality of the Healthy People 10 year program,
around the health of the population.

We are talking about population health, and it seems to me that we are also
strategically talking about public private partnerships.

I would like to find out if the healthy people structure of looking at the
health of a population is used in any other way by other organizations.

In other words, there is a way of looking at the health of the population
as put in the Healthy People 2010, and it is a repeated way of doing it.

It deals with race, ethnicity, the variables that are within that. That
structure, it seems to me, could be useful in the private sector for people to
look at the health of their populations.

I would like to find out — and this is a macro kind of a question —
whether that is happening, whether that occurs. Does that make any sense?

MR. COHN: I hear what you are saying, Bill, but I think you are beginning
to convince me that this is not part of the biennial report, but is a separate
investigation if we would decide to go forward on it.

I mean, that is what I am hearing. I don’t in any way disagree with what
you are saying, but as I am listening to it and looking at that, that isn’t
this report. So, I agree, and you are beginning to convince me that we should
take the whole section out.

MR. STEINWACHS: So, Simon, I wonder, can we drop this section or can we
just have something that indicates that, within all of the reports and
recommendations and so on, there are also considerations given to what are
needs for new research, new methods, new information?

MS. GREENBERG: And if the committee really does want to take this seriously
in the future, or make a serious effort, it could just be referred to in the
looking ahead section.

MR. COHN: I think what we can do is — I think what I am hearing is, we are
not going to spend time with the population subcommittee trying to come up with
a research agenda.

We will look through the first couple of paragraphs here. If there is
something still left, that sort of talks about the importance of research, but
leave it at that level, and we will see if that is even valuable. Otherwise, we
will remove the section, and we will bring that back to you in September and
discuss it with the executive subcommittee between here and there. Does Susan
have a comment on it? I think that is where I am sort of coming to with this
conversation.

MR. STEINWACHS: That would make sense to me, at least.

MS. KANAAN: This is Susan. I do strongly favor the idea of removing this
section. I think it is anomalous in all sorts of ways.

It was worth the effort. It seemed like a good idea at the time, but I
think it is clear to everyone that it doesn’t really work very well. It needs
much more development to be meaningful, and the more it is developed, and the
better it is in its own right, the less appropriate it is for this context.

I like the fact that you are thinking of creating a separate document for
discussion for the research agenda. Certainly a reference to the importance of
the research theme can be included in one or two places in the report, even if
we remove this entire section.

MR. COHN: I think we are all smiling, and I think you have all helped us to
remove a problem. Carol, did you have a question?

MS. TRUDEL: I am in full agreement with this particular approach.

MR. COHN: Okay, now let me then move on to looking ahead. Obviously, I
think it is important for us to have a looking ahead section.

My own view is that it needs to be informed by the agenda and the sort of
work plan of the subcommittees and full committee for the next year.

So, rather than it reflecting certain things — a hearing that we may be
doing or an item that we have already just finished up with and whatever — I
think it is the place where we sort of lay out the types of things that we are
going to be working on, really, going to the future.

I realize there is a little bit of a disconnect, that this will be
September 2003, whereas this is 2003-2004, but this is the art of writing, of
course, we know, and the art of putting together reports. My own thought is
that, as you all know, the executive subcommittee is meeting in August.

MS. GREENBERG: And Susan will be there.

MR. COHN: Susan will be there, and part of that work is to really look at
what our work plan is going to be, going forward.

So, the plan would be to have that for August, get that into the looking
ahead section, so it doesn’t become specific hearings, but more initiatives and
things that we are going to be looking at, areas that we are going to be
investigating, whatever, and that that is what is here. John Paul, you are
looking at me like you disagree. So, go ahead.

MR. HOUSTON: I am just wondering if we try to segment it more specifically
by committee or work group, because I think — there is over-arching strategic
direction of NCVHS, but then I think each committee probably sort of has its
own.

It is not clear, when I read through looking at this, it is sort of like a
rambling this is what we are going to do sort of thing.

MR. COHN: You mean, like it is now? That is right. That is why we are not
passing this today.

MR. HOUSTON: I mean actually subsetting it out, sort of a subsection by
subsection.

MR. COHN: You know, John Paul, I agree with what you are saying, which is
probably there needs to be notation of which committees are taking which leads.

I think one of the things we are trying to do this year is to bring
everybody sort of so that we all look like we are one committee, and be able to
talk about sort of global and various other pieces. We will see how that works
out.

MR. HOUSTON: I agree with you. I mean, I think there certainly needs to be
the over-arching strategic direction of the committee, but I still think there
are things that are happening within the different subcommittees that are very
separate and distinct.

MR. COHN: I guess, are you willing to have those be reflected in the
looking ahead section but reflecting on the specific subcommittees?

MR. HOUSTON: I think so.

MR. COHN: Then I agree.

MS. GREENBERG: Another alternative is — well, you can do both things, and
we have done this in the past, and I think Susan and I talked about the pros
and cons.

There are these sections of the report which are basically topical but
aligned with each subcommittee or work group.

At the end of those sections, one could put some subcommittee or work group
specific kind of future things, and then have a looking ahead for the whole
committee.

I am not necessarily recommending it, but I am saying that one could do
that, if you wanted to emphasize that.

MR. COHN: We can figure that one out. I think either way would work with
John Paul’s suggestion. Harry, you had a comment?

MR. REYNOLDS: Yes, I worry a little bit about the looking ahead. If you
just take the events of the last three weeks, I think what is important is,
obviously, we talk about what we did in 2003 and 2004, and the agenda, and say
what we are doing now.

Looking ahead, a little bit along John’s comments, we have subjects, we
have responsibilities, we have coordination efforts and other things.

I think, as you look at where everybody is going to play going forward —
and that is one of the issues that we had as we looked at AHIC and other things
— being at all specific in that category, if somebody were to pick this up, it
could look like we are out of the mainstream.

It could look like we are going the wrong way, because this is moving so
fast, and the actual directions and the subjects and the issues are changing
continually, and one that wasn’t a priority two weeks ago, all of a sudden, may
become the same issue, and it is not even mentioned by us. So, it is like we
looked ahead and really looked the wrong way.

MR. COHN: We were facing backwards when other people were looking forward.

MR. REYNOLDS: I think the accomplishments stand on their own. I think the
structure of the committee — kind of what we did for the Secretary, the
structure of the committee stands on its own. There is what it is here for.

I hesitate very much to really get specific by committee, and I really
hesitate to get real overly specific about actual subjects or functions,
because we could look like we diverted clear off the track.

MR. COHN: I hear a first and a second, we have Carol and we have Don, and
then the good news is that we can refer this over to the executive subcommittee
to figure out what we are going to do.

MS. MC CALL: One opportunity, to play off what Harry was talking about, is
to, in any sort of looking ahead section, I would recommend, at best, we
foreshadow some of the themes, given what is happening out there, and how
dynamic things are right now.

There are some specific themes that we know we want to pursue, and I think
that we can use this to call that out.

To go into too much detail not only begs this looking in the wrong
direction fatality we might incur, but it also buries the lead.

When we do have those work plans and over-arching themes across NCVHS and
also details within each subcommittee, they will deserve to see the full light
of day in their own right. I would hate to see them as a coda on the end of a
document that really starts out by summarizing the past.

MR. COHN: Carol, thank you for your comment.

MR. STEINWACHS: This was Don’s tongue in cheek suggestion. I know in some
branches of science, the scientists are smart enough that they do the research
and then they write the proposal to fund that research, but that allows you to
do the next research to write the next proposal.

So, if we move this report slowly enough, we will say we look forward from
2004 to the future in 2005, and it turns out that is exactly what we did.

MR. COHN: I think with these comments, I want to thank you all. I think you
are providing much better thoughts than I had had when we started this
conversation.

For example, removing things is always a great joy to someone who is
fundamentally something of an editor in one life, as well as, I think, the
concept of I think high level looking ahead.

It does — to try to do with themes and all of that, but short, is probably
an appropriate way to end a document like this.

So, I think we will work on it. I think you provided a lot of very good
guidance on this. The executive subcommittee will review this, and hopefully we
will have a finished document.

Really, the only thing we are talking about on the last couple of pages,
and given that we have gotten rid of pretty much a whole section, probably the
last couple of paragraphs, and we will bring that back in September for action.
Finally comments, and then we will take a break.

MR. STEUERLE: I sort of heard Don saying — I don’t know — that maybe it
might be better to go ahead, like last time, if we are not going to change the
substance, to go ahead and give you permission to get it out without coming
back in September.

MR. BLAIR: I would support exactly what Simon just indicated.

MR. STEUERLE: You do want to see it again in September.

MS. GREENBERG: What is Gene suggesting?

MR. COHN: Gene was actually suggesting that this actually be passed with
the executive subcommittee working on the looking ahead section. That is what
he was suggesting.

MS. GREENBERG: I would rather bring it back myself. I mean, if we weren’t
meeting again until November I would say yes. Since there is less than a month
— in fact, that is a little bit of a concern — Susan, I hope you are able to
work within this time frame — but we are meeting the third week or something
of August, and then we are meeting the second week in September. So, the timing
is such.

One thing that I think the executive subcommittee can, I think, decide on
this, but the forward obviously, being from John, will be more reflective on
where the committee has come and all of that. it will not be looking forward,
really.

Sometimes the preface or the forward by the current chair is an opportunity
to kind of look ahead, and you wouldn’t have to have a looking ahead portion in
the report. Just do that in the preface.

MR. COHN: I think it is time for lunch, everybody. There is nothing here we
are voting on today. I want to thank you all. We will adjourn for lunch and
reconvene at 1:00 o’clock.

[Whereupon, at 12:05 p.m., the meeting was recessed, to reconvene at 1:00
p.m., that same day.]

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

MR. COHN: We are pleased to welcome David Brailer, the national coordinator
for health information technology.

David, thank you for coming and joining us. I think I have said this before
in public fora, but I really want to again congratulate you on both the great
work you did in developing the framework and, really, beyond that, turning it
into actual deliverables, strategies, work that is really beginning to
accelerate what is going to be going on with health information technology
going forward.

Obviously, we are delighted that you are here to join us, and I am looking
forward to having you update us on sort of what has happened over the last
couple of months, please.

Agenda Item: Update on Office of the National Coordinator
for Health Information Technology and RFI.

MR. BRAILER: Thanks, Simon, and thank you all for having me. This has
clearly been a very busy few week period with respect to health IT, and I know
that, in the spirit of NCVHS and probably your all’s longest standing goal in
driving this forward, I just want to thank you and congratulate you for the
work you have done in really bringing this forward.

I know, when I talked to your executive committee, I learned a new term
that I have been testing with some of my friends.

If you are all not schlepping yackas, then I encourage you to do so, over
the great work that is being done by so many people.

Also, as you know, the announcements that have come out have been the
result of a very large number of very talented federal leaders that have, I
think, been struggling somewhat in the wilderness up through the past year.

One of the challenges and the real privileges we have had is bringing that
group together to be a very focused and enabled group to really start driving
real results. So, I think there is a great deal of excitement overall.

Let me play backwards now and talk about kind of where we are and how we
got here. Three weeks ago, we released a summary of the RFI that was put out in
November 2004, asking for a lot of feedback about the framework for strategic
action and the related activities.

That RFI summary completed a setting of a foundation. I view the foundation
for the actions that have since been announced to be three-fold.

The first is a clinical foundation, and this clinical foundation has been
boiling forward in the past six years, since the Institute of Medicine report
that came out about medical errors, and the indelible linkage to health
information technology that they made.

It has been enhanced by the administration in its outlook for the use of
health information as a driver of consumer choice, the promoter of safety of
the American public, and as a mechanism for ensuring that we can begin getting
new market forces put into health care.

This clinical foundation has become apparent to many people, but we have
supplemented that with two other activities.

The first was a business foundation. Last month we released the health care
leadership panel report and this, as you know, was the report from the CEOs of
fortune 100 businesses, where we went to and asked to questions:

Do you, as large employers, believe that health information technology is a
necessary and urgent investment to help us deal with issues around health care
quality and cost efficiency;

Secondly, do you, as leaders of industries that have had substantial
industry transformation around the use of information at the point of service,
believe that health care will follow the course that you followed, and deliver
the kinds of sustained productivity growth of many of your industries —
retailing, telecom, banking, financial services, financial services, et cetera.
Would you enjoy those same benefits.

The answer from the health care literature panel, to both questions, was
yes. Yes, we do think that there is a need and there is an urgent opportunity,
a chance to transform the industry and get the kinds of results. Secondly, IT
can do that, and we think that we don’t see fundamental differences.

That report is on our web site, at hhs.gov/healthit. It is a very
thoughtful summary of the economic issues surrounding health and IT but, in
many ways, this laid a very solid sense that health IT is not just about
quality, it is not just about safety.

Those are obviously hugely important, but there is an economic component
here regarding the competitiveness of our economy and the use of scarce
resources.

Finally, the third piece, which is, if you will, a technical foundation.
Many of the questions that were asked, and certainly the comments that came
back, really helped us understand the boundary of reasonable thinking around
technical issues.

The process of reviewing it, with nearly 200 federal employees working
intensively over the course of several weeks, helps stimulate a level of
dialogue and a level of collaboration that I think was unprecedented before in
any of the efforts that we have had, in terms of the federal vehicle coming
together and understanding what it could and should do.

While many people who read the RFI summary that we published saw it being
followed only three days later by RFPs, I think it is fair to say that we were
looking at those RFI summaries very early on, as early as February.

The RFPs that flowed, flowed directly from those, and we saw months of
analysis and discussion that led to the direct linkage between those RFPs and
the RFIs that came out.

There are a few take always from the RFI summary. First, health information
sharing should be decentralized using the internet, make sure that it is not
centralized data bases, and let’s certainly not build over again what it is
that the internet brought to us.

We should use uniform communication standards that are open, to be able to
allow for the kinds of structure of health information.

We should have a governance process that reflects the needs of both public
and private stakeholders. This should not be government dictated, nor should it
be just left to the devices of the health care market.

Information should be patient-centric, and we should evaluate the
safeguards that are in place to protect privacy and that, over time, incentives
that drive adoption need to be considered.

The announcements that we made following that, as I said, flowed directly
from them, and they were mechanisms to address the market failures that have
resulted in the non-adoption of health IT.

We think that these actions will set the framework for a very significant
public private process that will allow infrastructure to be developed, that
will allow processes to unfold, and key drivers of interoperability and
ultimately of adoption be put in place, without the need to have new
regulations or requirements, or to dictate the outcome of the process in a way
that would traditionally be seen as our role.

The announcements were several-fold, and I will just highlight each one.
First, we announced the formation of the American Health Information community.

This is a federal advisory committee that will be comprised of 17
commissioners, roughly half federal agency heads and the other half from the
private sector.

We are still working on membership criteria, but we want this to be a place
where public private decision making comes together.

While this invokes the federal advisory committee process to make it
completely open and transparent, this is a body which is collaborative, a
decision making body that uses a recommendation vehicle.

We see this being very closely aligned with other efforts that we have
underway, not the least of which being NCVHS, federal health architecture,
consolidated health informatics, and clearly the RFPs that we issued.

We will be releasing the charter for the AHIC shortly and, from that, there
will be a call for nominations, and we want to seat that commission as soon as
we can, certainly in fiscal year 2005, if not with a month or two to spare
before fiscal year 2005 comes to an end.

We announced an RFP for standards development organizations to come
together with doctors, hospitals, laboratories and other users of health
information, and develop a process to harmonize standards.

This RFP asked for processes to be developed and evaluated, so we can
understand how we can build on the respectful standards development
organizations that are in place, and allow us to have an accelerated process
for having a uniform and single set of standards, and a road map for those
being put in place quickly.

We released an RFP for a process to be developed and evaluated relating to
the certification of technologies, starting with ambulatory electronic health
records, but moving through other types of health information technology and
ultimately infrastructure that connects them all together, the architectures.

This RFP asked for entities to determine criteria, to subject actual
products on the market to those criteria, and to report to us what they found,
not only about the products, but about what that changes in the market and how
we can build upon that.

We have an RFP out asking for entities to come forward with proposals or
architectures that allow nationwide connectivity among certified electronic
health records, a capacity to have seamless sharing of health information, as
would be wished by the patient or not, in those cases, that allow a single
point of connectivity for labs, pharmacy, imaging and related information.

It is our expectation that we will award up to six contracts to have a
diversity of architectures developed in the public domain and to have
prototypes actually tested, and those can be then subjected to an evaluation
process, so we can understand what the nation’s capacity for health information
sharing could and should be.

We have an RFP out to convene state leaders, to begin exploring state level
and enterprise level variations in security and privacy, the challenge here
being preservation of the flexibility that is inherent in state and federal
law, that does not impose a single regimen for privacy and security, yet allows
enough standardization or harmonization of those practices so that we have
seamless interoperability.

We want to avoid the paradox that flexibility comes at the cost of
interoperability, or interoperability comes at the cost of flexibility, as we
advance the nation’s security and privacy regimens.

We already have underway a project with AHEMA, to begin developing modern
fraud detection techniques that are using electronic health records.

The question here is how we can take advantage of an emerging health
information infrastructure in the United States to begin developing much more
forward looking fraud prevention mechanisms that can work at the point of care.
So, we don’t have to rely on fraud prosecution long after the fact. We can make
this a lower risk activity for anyone in the private sector.

We also are looking at following through on the other recommendations that
we have made around developing architectures for the storage, management and
accessing of medical knowledge part of the national infrastructure, and
exploring the economics of the adoption gap, understanding how the gap between
large providers, who adopt electronic health records, and small providers can
be closed in a way that levels the playing field, brings these technologies
into common place, and helps us understand how to do so in a way that
stimulates competition and health information technology, and ultimately
competition or performance value that uses these technologies.

Finally, we will be continuing our efforts to study and monitor health
information technology adoption. There are a number of surveys that are
underway.

These surveys have highly disparate findings, all suggesting low levels of
adoption, with an adoption gap that is stratified by large versus small.

We don’t have a consistent and regular mechanism for tracking adoption. So,
we will be coming forward with further specification on how we will be doing
that between now and the end of this fiscal year.

This is a very busy time. Many of the things that my office has worked on
since the day I came to the federal government have happened in the past three
weeks.

We are now following through to ensure that the RFPs can be completed and
contracted before the end of the fiscal year, that the AHIC becomes
operational, and the key mechanisms for tying it to the RFPs and to the other
government apparatuses are underway quickly, and we can take advantage of the
environment that has been created by the very strong support that health
information technology has gotten from people in cities and rural areas, in all
quadrants of the United States geography, from both political parties, from at
least now two branches of the federal government, and from state and local
government leaders, as well as the private sector.

So, thank you all for your vision and your leadership, your steadfastness,
your support of my office and what we have been trying to do, and very much for
your leadership going forward.

I think it is fair to say that the dynamics of this will continue to
accelerate for the foreseeable future, and your activities will be called upon
more and more, to be able to make sure that we are going in the right
direction.

In the end, we have pursued an interoperability forward strategy, which
means that we are putting much of our effort in ensuring that, as we begin to
close the adoption gap in the United States, it will be based upon truly
interoperable health information, that we have the capacity for doing that out
of the box.

So, this will take a great deal of work for all of us to be able to achieve
that. Thank you all very much for your time.

MR. COHN: David, thank you. Questions? Comments?

MR. FITZMAURICE: You mentioned, David, a standards road map, and we will
hear later on from the council on the systemic interoperability, which is
charged with developing such a standards road map.

Is there coordination and collaboration between your office and this
council, so that whatever they take can be used within the federal government?

MR. BRAILER: Very much. The commission on systemic interoperability has
played very much hand in glove with what we have done, and I will call out two
specific ways.

One of the things that we felt was critically important to be done was to
have a very compelling end stage vision for what it is that health information
technology will do from the perspective of the patient or the consumer and/or
from the end users even the professions.

I think very much the commission is going to be able to chart that, and to
define that will be very important, and we see that as being one of the key
hand offs to the AHIC.

In many ways, the AHIC would be the successor to what the commission’s work
has done, to be able to see that through and implement it.

Secondly, I am certain that the commission will come forward with a variety
of recommendations, that we would see the AHIC filtering and prioritizing and
making implementation decisions on, or making recommendations to agencies or to
my office or to our contractors, to be able to follow through on.

So, we certainly await their report, and look forward to translating that
into the actions that are necessary in the context.

I think very much it is a very critical piece because, if it wasn’t done by
the commission, I think the AHIC would have months and months of work to be
able to do that same work, which could delay the activities that we want to get
underway.

MR. ROTHSTEIN: Thanks, Simon and David. I have two questions. One deals
with the transitional issues that are going to be very difficult in terms of
moving extant paper records to an electronic file, or do we start today and
just forget everything in the past.

I was wondering about whether there was some process or work group or way
that those issues were going to be resolved.

The second one is, in the RFP that you are talking about for architecture
design, is an issue to be considered adopting contextual access criteria for
medical and non-medical uses? I haven’t seen that, and I was wondering where
that is.

MR. BRAILER: First, regarding transition, we have not made that an element
of our, if you will, federal or national plan.

We have looked at a lot of organizations, some of which are represented
here around the table, and how they have gone about the process of going from
paper to electronic.

Some are more or less detaching their future electronic infrastructure from
the past. Others are having really heroic efforts to convert the legacy past
into an electronic future.

Others, in what seems to be predominantly taking advantage of the first
visit with the patient to bring key elements left to the judgement of the
physician.

This is, in fact, one of the reasons in most research that there is a
transitional productivity decrease for clinicians, because of the one time
transition of records into the electronic infrastructure.

We see that really being a process that is left to the private sector to
determine the best way to make that transition.

I don’t think we add by being proscriptive about how that should be done.
We may be able to add by providing ideas or processes or suggestions about best
practices.

We are also watching what federal agencies are doing. You know, at least
two federal agencies are involved in transitions from paper to electronic
process now. They seem to be following that same middle road.

So, we have not defined that as an element, but we will certainly take that
under advisement, to go back and double check to make sure that we haven’t left
something that is, if you would, a critical national enabler that we should
look at.

With respect to the RFP, I just want to first caution that I can’t go
beyond any of the text that is in the RFPs to provide any commentary except
what is there.

I will say that the architecture RFP starts with the presumption that we
don’t know what we don’t know. Those RFPs ask for architectures to be defined,
as well as business processes supporting those, so that we can compare the
multiple ones that are developed, and begin understanding what it is that we
need to know to be able to succeed in this effort.

Unlike electronic health records, where I think it is possible to have a
very meaningful discussion about what are the elements, features and functions
of an electronic health record that we like, and what we don’t like, and what
should be there and what should not, every time I have had the discussion about
connectivity architecture, it is a highly hypothetical and theoretical
discussion.

So, we want to start bounding it by real reality. Since reality doesn’t
exist, we have to create it. This is what those efforts are like.

Therefore, with your question, along with very many others, we did not
specify what has got to be there and what doesn’t, because we don’t want to
preordain the outcome.

We see these as very focused, innovative research, to come back with what
the issues are. So, we can then begin defining the questions for further
efforts.

Suffice it to say that one RFP will not create the infrastructure that we
need, but this is the critical enabler to be able to do that.

MR. ROTHSTEIN: Let me just say that I appreciate your not wanting to tie
the hands of the architecture designers.

It may be that, at some point in the future, to build in the necessary
privacy and confidentiality protections, that your office may have to be
somewhat more prescriptive, in the event that those designers don’t put a
priority on incorporating those features that we deem essential.

MR. BRAILER: Yes, I appreciate that, and let me just say two things about
that. Actually, I will say three. I certainly hope that anyone who is involved
in the development of that architecture, regardless of whether they respond to
our RFPs or not, read the enlightening reports that have come from both NCVHS
and particularly the privacy subgroup.

I think that it raises a lot of questions that ultimately, I think,
innovation and software have to answer, to some degree.

Secondly, there is a dependency that we called out in that RFP between the
architecture innovation and the certification process in another RFP.

We expect the architectures to be handed off, to be reviewed by a separate
group, by the certification collaborative, to be able to determine what it
taught us about our ability to specify what the functions and features of an
architecture should be.

I would certainly expect that group to not be bound only by what is put
before them. We want them to be more normative, but this creates a starter kit.
To that extent that they can do that, great.

Also, the AHIC will be watching this process, which is an end stage group
of users who are connected to not what can be done with technology, but what
needs to be done to have a meaningful protected asset for the American people.

From that perspective, there is at least built into this process two levels
of check, to make sure that things that, in a more narrow sense, architecture
thinkers didn’t consider, that they get bolted back in.

We will see how that process goes. We are going to be managing it to make
sure that the result comes out with at least the right questions being
addressed, and we will evaluate then where we are with respect to the need for
more iteration.

MR. REYNOLDS: Thank you, David. I have enjoyed hearing you a number of
times. Now I am actually getting it. You mentioned three foundations, and there
is one that keeps coming up in the discussions I am in that may fit into one of
these but it doesn’t appear to right now for me, and that is called the
culture.

You have the situation — and Mark touched on it some and you touched on it
— where we need information to do the right kind of medicine. We need
information to make the right kind of decisions, whether it is e prescribing or
anything else that is going on.

You have got people who may want to hold back information. You have got the
liability of the doctor, you have goth the liability of the patient, you have
got the liability of the other people involved.

So, the whole culture, we are looking at business, clinical and technology,
but there is a whole culture that is going to have to adjust to this whole
thing.

The American public, in many ways, deals well, and not so well in other
ways as technology takes off, and there are plenty of risks and plenty of
benefits.

So, where does that fit in here, and the education of that, and really
bringing people not just that the RFP works, but that this is really something
that is going to make a difference.

MR. BRAILER: I think in a way it is kind of the real question here. I view
— my view of what it is we are here to do, I think, will provide some
commentary on that question, although I think, in the end, I have made this
comment in the public before.

The years that I spent at the Wharton School taught me, if nothing else,
that no strategy or no policy can change culture. It is the other way around.
Or, as is commonly said, culture eats strategy for lunch.

I think this is the case, but in many ways these cultural issues in health
care are what are really at question.

What I see as being the absolute back stop of cultural change is young
physicians and young consumers. I won’t define what I mean by young, but
remember that interns who started an internship this year were born the same
year the IBM PC came to market.

I view this group as the absolute back stop on not tolerating what we
tolerate in health care on a daily basis. They have come to a world where
everything that they do is on line, is connected, is shared, is socially
networked.

I cannot imagine that they would tolerate in their clinical practices
anything else. Likewise consumers, who are making treatment choices for
themselves, who have reported in surveys their great and growing
dissatisfaction with showing up to a doctor’s office, an emergency room, a
hospital, a site of care, and have them fumble around and not know information
about them.

It will be the ultimate back stop on whether or not the consumer would
ultimately allow this to occur. So, in many ways, the question that I face is
two fold.

First, how do we create the enablers, so that that cultural phenomenon can
take center stage. In many ways, I see health IT as an enabler of that. It
allows it to happen.

To me, a great short coming would be if we came to a dawning of recognizing
that we could have a better way in health care, that the culture wanted it, but
it couldn’t be delivered because of technical capacity, we would have failed
today.

The flip side question is, how do we accelerate the cultural phenomenon. To
some degree, there is a little bit of build it and they will come.

If people can see the future before them, it accelerates it. Luckily, in
health care, we have at least 10 percent of our providers starting to do, if
you would, the right thing, electronic environments.

It may not be fully interoperable. It may not have the kinds of clinical
decision support back stops that guarantee better value, but it is a step in
the right direction.

So, a lot of our efforts are not just on making it possible, but making it
accelerated. I don’t know that we want to wait for the whole cultural
generation change to come through.

I know that is very much where you are. So, I see the chance for us to
create, if you would, tipping points, or flexion points that could accelerate
this, but I have not stated direct accountability, because so many of the
factors for that piece are out of our control.

I think, in the end, the health care industry has to decide what it wants
to be. Does it want to be consumer focused. Does it want to be market driven or
does it want to be increasingly a government agency.

All of these things rolled together, I think, are going to make
determinations, but I am pretty optimistic that the factors that we see are
getting more and more resonance with the public.

Just this month nearly every major news weekly had major focuses on health
information technology, and they did what we want them to do. They talked about
this from the perspective of what it means to real people in their lives.

I am just astonished at how many people come to me now with personal
stories about how their personal health record or their physicians e mail
communication or the e prescribing that they got did something real and
meaningful in their life.

Those stories are so tangible and so real that I can’t imagine that they
won’t circulate at least through the, if you will, a large sector of people who
regularly consume health care. In the end, there are factors that are out of
our control, and we just have to accept that for what it is.

MS. MCCALL: Thank you, David. A couple of things. First, just to set the
stage, we had had a wonderful two day summit here, and heard a lot from people
that are wrestling with the very same things that you are seeking to transform.

One of the things that we heard from Dr. John Helumpka(?) — and he is the
new CEO of this Massachusetts REO — and he has a gorgeous system there,
interoperable, at least within the state.

He came to us and he said, you know, it is exquisite, and yet I still am
missing something, and what I am missing are a lot of measures and metrics
around quality and value and all of that.

We heard another gentleman, also very eloquent, say that when you think
about metrics, that as you design your system, you can design it along a
spectrum.

You can design it at one end for accountability and to measure. You can
design it at another end to learn, if that is its primary purpose, to begin to,
as you would say, fill in.

We don’t even know what we don’t know, and we can kind of at least begin to
know what we don’t know at some point.

So, all of that is kind of back drop to say, within the RFPs that you have
sent out, two questions. Where are you focusing on that particular knowledge
management discovery and how to incorporate that in.

Then a second question would be, I think about demand and I think about
ways that we can, to the cultural point, how can we ignite it.

If we can ignite demand on the part of a person, where is that in there.
Then I suppose last, what can we, in NCVHS, how can we best contribute, assist,
aid, align with this work.

MR. BRAILER: It is a great question. Let me first talk about, with respect
to reporting what is not in those RFPs. There are still pieces to come.

The implication of taking an interoperability forward strategy is that
pieces that do speak to demand are not there.

The reason is that, if you would — I think we have a unique opportunity
before the demand components take off, to get the pieces in place for
interoperability.

I say this because, while a good outcome would be lots of doctors using
electronic health records, a better outcome would be lots of doctors using
electronic health records to meet minimal features for security and having
clinical decision support in place.

An even better outcome would be doctors using those kinds of products that
are connected to a back bone that basically lets information be shared as the
patients allow it to be shared.

MS. MC CALL: I actually meant demands on the part of a consumer.

MR. BRAILER: Okay, good, I appreciate that. So, to the specific question
for reporting, I see — and many people here do see a direct relationship
between pay for performance and IT adoption in two ways.

First, many of the pay for performance programs that are being tested, if
you would, not just under government oversight but just in the private sector
have line items.

Ten to 20 percent of the performance increment is based on health IT use,
and that clearly becomes part of the subsidy or part of the, if you would,
offset for using those tools.

The flip side is, it is very clear in those programs that you can’t really
have substantial reporting requirements without having infrastructure in place
in the practices to do the reporting.

The challenge there is agreement on what metrics are to be reported. That
is, again, inherently not a technology question.

I think it is, through our discussion, a cultural question about who are we
watching and in what way. I think that there is clearly something there, but I
think there is a bigger question that I will just focus on, which is should the
capacity to report data be an attribute of the electronic health record.

Should it be an attribute of the architecture that connects them. This is
one of the questions that we would like to have an answer to.

I am concerned about a large number of different hopes and expectations for
how, when physicians have electronic records in place, we will get vast,
precise amounts of timely, quality metrics.

We will get substantial amounts of information about what is going on with
the drugs they give their patients and the potential for adverse events.

We will get lots of information that will help us monitor outbreaks,
manmade or natural, and you know, having made many statements like that, and
then have software engineers walk away from me rolling their eyes, we get to a
world that I call tyranny of the denominator.

What I mean by that is, it is pretty easy to figure out how many patients
are on a certain drug, how many people have a certain symptom, all the things
that we like to count.

The problem that I always see us coming back to is, what is the universe of
people who could have this, so you can begin measuring rates, whether it is
people on a certain drug, people who are walking in with certain symptoms.

That data often requires gyrations or tasks performed on information that
are very difficult to do. In an electronic health record, with its
computational power, the data that is available and the content around it, you
can make significant assumptions about how much data is structured versus
contextually reported.

Therefore, I think we should be cautious about our expectations. One of the
things we will want the AHIC to look at, and certainly, I hope, your third
question, that NCVHS will look at, is what are reasonable expectations around
the capacity to report across these various areas, how those are done over
time.

I also think a separate question that we are going to be asking our
contractors to look at, and we will be dialoguing in AHIC and I hope here is,
is that something the electronic health records should do anyway?

If we are going to be building a national architecture, shouldn’t it be
handling reporting, so that we don’t have this overhead imposed on the
physician’s practice, or overhead that is imposed on these products that we are
trying to lower the cost of, so that they work at a price point that doctors
can afford them.

I don’t know the answer. I am just concerned about the question, but you
are very much striking to the very heart of what we really will get out of this
from a public health value over the course of time.

I think there is real value there, but it has been shown that we have got
to be, I think, realistic about what we can report over time.

MR. COHN: Do you have time for one more question? I think Gene Steuerle had
a question, and then I think we will wrap up.

MR. STEUERLE: Thank you, David, and congratulations, again, on all the
progress you have made. It is quite remarkable.

This ball that a lot of people have been pushing up the hill, particularly
you and your staff lately, is starting to roll down the hill.

You mentioned that demand may increase fairly rapidly in the future, and
you are hoping to get slightly ahead of that demand curve in terms of some of
the things that you prepare.

One area where the demand is increasing, if you don’t mind my raising it,
is in the political sphere. We now have at least two potential presidential
candidates quickly claiming that they want to be leaders in this area,
including Frist and Hillary Clinton.

We have Newt Gingrich jumping in. You have a lot of politicians jumping in,
and you have even your own budget and the Presidential budget going from $87
million to $125 million.

I see this budget as potentially increasing fairly rapidly. At least, from
my experience, the way to claim you are a leader in this area is to spend
slightly more than someone else does.

I am wondering if you have given any thought — I don’t mean that entirely
cynically. I am just wondering, have you given some thought to how that part of
the ball rolling down the hill might be guided, in terms of, if there is going
to be additional money that is going to be increasingly put into this, even if
it is only in the tens of millions.

How can that best be spent, not only with respect to RFPs to outsiders, but
perhaps spending within government agencies, and to make better use of the
learning within VA or the Defense Department or other departments.

I am just curious whether that is part of what you are dealing with, and
whether you have any strategy or tactic for going forward.

MR. BRAILER: Gene, I am pondering, not what the answer to your question is,
but what share of it I can actually say.

By the way, I apologize that I never got to answer the question you posed
to me at the federal reserve conference a couple of weeks ago, because of all
the other questions, but that one I would rather answer than this one.

I am, to this day, I marvel at the level of support and the increasing
senior political figures that view this as an important area.

I think one of the enduring successes that I wish I could take credit for,
but I think is perhaps more happenstance than anything else, is that there is
an increasing level of interest in doing something here, not just federal
figures, but state governments, local politicians and others.

I think to some degree it is because of the components of a clearly defined
problem and a pretty clearly defined solution, although I think I would be the
first — and maybe of you would be probably even ahead of me — to say the
problem is not quite that clear and the solution is clearly relatively fuzzy,
because health IT is a means to an end, and it is not an end.

Having said that, we have been so much in a mode, since almost the day I
started, of keeping the agenda protected and moving forward, and marshalling it
in the face of just unparalleled kinds of adversities that we have come across
with our appropriations, collection related things, and transitions, that I
have not stopped to ask what happens if we come to a period where our ability
to be creative and resourceful is the rate limiting step, and not our ability
to get the resources to succeed.

I will say this. The RFPs that we have put out, these are well thought out.
I think the federal team that worked on these spent a lot of time making sure
that not only each piece worked, but the system of pieces came together to
create something, and that it nudged the private sector in the right direction,
and played the role that both the President and the Secretary have laid out for
us to play, which is a catalyst, but there is a lot more to be done.

I think the same is true with the issues on the adoption side. While that
has not been the focus of what we have done, there is a lot to do.

So, I think the very specific questions will come down to what we learn
from this process. Where will we go with an architecture that I think that is
going to be substantially expensive to build.

The vision I have is that it won’t be using public dollars. I view the
capacity of commercial markets to invest and, to my perspective, we want to
create a market where smart capital would invest hefty sums to create a
national infrastructure and have that compete in a way that it gives us the
kinds of cost performance, the kinds of non-proprietary domination that we come
to expect with cellular telephony and various other things.

I haven’t thought about the world where we would have a lot of federal
capital to put into that, because I don’t like the federal control that comes
with that happening. So, that is an issue that is worth discussion.

There are two other areas that I would call out, where I think there are
going to be substantial needs. The first is in the safety net and in rural and
underserved clinics.

I think the financial proposition there is challenging at best, and I think
we have a responsibility to ensure that they come along.

I think that health information technology delivers a real health status
benefit to the patients that it is used on, which also means that we have to
make sure that everyone has got it.

Second, I think we are going to face a real challenge with very small
physician offices, and not just financial support, but how the kind of know
how, the kinds of implementation change comes to exist for them is still a
question that is mostly economic.

I think we have a long way to go, and I certainly would welcome the chance
to address that question for real, because it would mean that many of the
things that we have tried to do to make this issue irreversible have come to
be.

MR. COHN: David, thank you so much for joining us. Once again, we applaud
your leadership and the success of your efforts.

Obviously, we look forward to a close, ongoing working relationship with
you, as well as with the new initiatives. So, congratulations.

MR. BRAILER: Thank you, Simon.

MR. COHN: Our next presenter is LeRoy Jones, who is from ONCHIT, and you
are going to update us on what is going on with the federal health
architecture. Thank you very much for joining us.

Is the computer all set up for what you need? Should we give everybody a
five minute stretch? Okay, why don’t we give everybody a five minute stretch.

[Brief recess.]

MR. COHN: Once again, we are pleased to have a presentation on the federal
health architecture from Mr. LeRoy Jones. I want to thank you for joining
us, and I will let you get going here.

Agenda Item: Briefing on Federal Health
Architecture.

MR. JONES: Thank you, Simon, and the committee, for having me here today.
My name is Lee Jones, and I am with the office of the national coordinator, Dr.
Brailer, who was just in this seat.

I am one of his senior advisors. I used to be called senior technical
advisor, but I guess an advisor is an advisor after all.

Today, I am going to talk about the federal health architecture, and I am
going to spend most of the time, essentially, talking about what it is and some
of its history and those sorts of things, inasmuch as I am not sure how
familiar this audience is with that, as opposed to, say, just an update of its
activities, although I will wind that into the talk.

I am going to use essentially an off the shelf presentation to do that, but
I will embellish on different points to make it more relevant to things that
are going on today.

With that, I am going to discuss essentially what the federal health
architecture is meant to address and what it is exactly, how the process works
within the federal health architecture, and then some about the work groups
that exist therein and the benefits.

Then lastly I will just talk about some of the issues that we face. As you
might imagine, all the different things that Dr. Brailer just talked about and,
to some extent, all the things that have been going on in the office of the
national coordinator over the last year, really affect what happens in the
federal health architecture, and its role going forward.

So, when we look at the federal space as it pertains to health, there are
many different stakeholders, many different kinds of activities, many different
agendas.

By and large, they happen autonomously within an agency or a department.
So, what the federal health architecture is, is several different things.

One, it is a forum for all these different stakeholders to come together
and to inform one another about what is going on with respect to health in
their corner of the federal government.

Two, beyond just informing one another, it is an opportunity for them to
collaborate together in order to come up with common target architectures that
can leverage the best of what everyone is doing.

So, the challenge that we are attempting to meet is how we can share
information and resources to improve care and protect citizens.

This is sort of the gentle path that led to where we are today, and I will
talk a little bit more about some of the potholes there.

The consolidated health informatics is listed on this slide because it
became part of the federal health architecture.

It is hard for me to pinpoint an exact date that that happened. I think you
can count from different points along the way, but somewhere over the course of
the last few months.

The work of CHI is probably more well known to this group than possibly the
federal health architecture, inasmuch as CHI has been actively engaged with
this group in sort of vetting the standards that were selected for the 20
health care domains that were identified by that group.

The federal health architecture was established as an e government line of
business, and it really seeks to unify the conversation and architectures
across the federal government as it pertains to health, and is a subset of the
federal enterprise architecture in that sense.

April, May 6 in particular, when Dr. Brailer was appointed, and that whole
period leading up to July 21, the office of the national coordinator was
established, and the federal health architecture was deemed by HHS, who is a
managing partner of that effort, to most closely be aligned with the objectives
of the office of the national coordinator. So, it came under our umbrella in
that time frame, and has been integrated into what we are doing.

The things that aren’t shown on this brief road map are all of the
different activities associated with the establishment of the office of the
national coordinator that had an impact on the continual progress of the
federal health architecture, and the consolidated health informatics
initiative.

What I mean by that is, when it changes hands from one entity to another,
there is some period of time where there is an integration.

Then, in addition to that, our office has had a particularly interesting
road to get to this point. That point, being as interesting as it was, has
sometimes served to obscure some of the things that have been going on with the
federal health architecture and consolidated health informatics in particular.
So, one thing that I will talk about at the end, in the issues, is how those
things impact us going forward.

When our office published a framework for strategic action last summer, in
particular there was an action, a strategy that was associated with our second
goal, that is to coordinate the federal health information systems.

We thought, in ONCHIT, that this is a key portion of realizing the dream or
the vision that the President has laid out for interoperable electronic health
records.

We wanted to make sure that all of the health information technology
dollars in the federal government were going to support or at least be
supportive in a direct or indirect way, to that vision.

In order to do that, we had to have a means to coordinate those
investments, and to coordinate the architectures that resulted from those
investments.

So, along those lines, we included this strategy as part of the goal, and
it was a natural fit for the federal health architecture and CHI.

So, the federal health architecture has been around and has the vision of
providing safer and healthier citizens who have improved access to health
related information and services.

We have the goals of trying to coordinate and improve coordination among
all of our different partners and their corresponding solutions, and then
improve those solutions to the extent possible by taking advantage of the best
of what everyone has to offer.

It includes the — it is a cross agency, cross departmental initiative. The
Department of Health and Human Services is the managing partner.

We also have two other lead partners in the Department of Defense and VHA,
the Veteran Health Affairs, and together they form sort of the triumvirate that
represents the most spending in health IT across the government. However, there
are other partners who participate actively, and certainly are at the table.

FHA, I am often asked, what does it really do, and what is it trying to
produce, and what is its output? So, a simple way of thinking about what the
FHA is, is a blue print of who, what, where, when, and how and why of the
federal health enterprise, meaning, we want to understand all the things that
are going on, and all the processes that are involved in creating this federal
health enterprise, and then ultimately talk about where should we evolve that
federal health enterprise to.

More specifically, we try to identify the strategic business drivers,
document the business processes, define the information that is associated with
those processes, make sure that we are able to deliver the necessary services
across the federal health sector. We want to inventory everything that we have
and measure how we move toward our target architecture.

When we look at what we are really ultimately doing, we are trying to
document where we are in terms of delivering health care services as a
government, and where we would like to be, and then ultimately what is our
transition to those things.

I will talk a little bit about what we ask agencies, specifically, to do
when they participate in the federal health architecture.

So, there is a process that we espouse, and I will show some of the steps
involved in that process in subsequent slides.

Suffice it to say that the federal health architecture is espousing a
process by which we develop our target architecture, by analyzing what the
requirements are for the federal health space, and then trying to make sure
that we address all of the areas in a systematic way that will lead to a
transition toward an improved architecture, if possible.

So, we have some federal health architecture process, and what we typically
see is that there are agencies and departments who may participate in the
federal health architecture, but they have their own agency specific health
architecture process that they are beholden to. So, they sort of participate in
the federal health architecture in a tangential way.

What we are ultimately trying to achieve is to see that every agency
integrates the federal health architecture process into their own health
architecture process.

If every agency and department were able to do this, then as a government,
across the health sector, we would be employing the same set of methodologies,
the same set of techniques, and arriving at our architectures, as well as being
able to share architectural components.

We realize that that is no easy feat, because the health architecture
portion of an agency is usually a subset of a larger architectural mission that
any given agency or department has.

So, we understand that often health is captive to larger concerns. Even
within that, there may be some areas that are not aligned with the federal
health architecture, nor are they aligned — rather, they have some autonomy
from the process that an agency has as it pertains to health.

When we thought about what it means to really participate with the federal
health architecture, and align oneself to it, we thought there were three
components.

The first of these components is a commitment to the FHA process, meaning
that we want everyone to have buy in that it has value for us to come together
as a health community, and to have a set of common processes to lead us toward
target architecture.

So, as we started to figure out our health alignment, the first component,
again, is process commitment, and we asked each agency to do several tangible
things.

One is to offer a memorandum of understanding that declares a commitment to
the federal health architecture. So, we want them to be engaged in more than
just sort of a lip service.

Two, we want to incorporate the FHA into the formal architecture process
that exists within each agency. So, we want to become integral to those
processes, and not just something on the side that someone has to coordinate
with.

Then we asked them to champion the FHA concerns within their agency itself.
So, it is not just something that a certain set of people do, but it is
something that is known and understood within each of the agencies.

Then, of course, we want to understand the role that each health
architecture and supporting group within the agencies has within their
organization, so that we can understand how to best engage with each of our
partners.

Secondly, as we see that commitment come about, and people commit to the
federal health architecture as being integral to their own process, we would
expect that that would reflect itself in the architectures that those agencies
produce, starting to align more closely with what the target architectures are
that FHA produces.

So, as there are subsequent or ongoing versions of the federal health
architecture that are published here, 1.0, 2.0, et cetera, we would expect that
all the different architectures that exist in different agencies, wherever they
align currently with respect to the federal health architecture, they would,
over time, start to move in and be more closely align and overlap in
appropriate portions with the target architectures as espoused by the federal
health architecture.

As you can see, as they all come toward center and align with the federal
health architecture, they also come closer to one another and can take
advantage of best practices and, sometimes in some instances, even shared
technology and technology paradigms.

So, the second component of what we call alignment with the federal health
architecture is really an architectural commitment.

That consists of, published target architectures from agencies have FHA
incorporated in them, and identified in an explicit way.

We have a progressive expansion of the relevant elements of FHA within the
agency architectures or, said another way, as architectures within agencies
evolve, those elements that pertain to health should start to resemble the FHA
more closely as time goes on.

Then, all the artifacts that are produced, or the deliverables or outputs
of the agency process for architecture, as they are relevant to the FHA, become
part of the FHA repository for reference.

So, if we have a commitment from each agency to participate in the federal
health architecture, and then we have a commitment to integrate their
architectural process with the federal health architecture and architectural
products, we would expect that to ultimately be reflected in the systems that
those agencies produce.

So, each agency has some architecture, and they have systems that are based
on those architectures, or they may be contemplating systems that are in the
future, and aren’t currently associated with an architecture.

So, what we would expect is that, because the federal health architecture
has, as a major tenet, that we are seeking a target architecture, there are
some systems that may never evolve using what is espoused by the federal health
architecture.

This is just sort of a fact of life, but then there are other systems that
will move from their current architecture that they are based on to some future
architecture of the agency which, in theory, would be more closely aligned with
the federal health architecture, and new systems also could target the future
federal health architecture.

So, this is really the third component of being aligned with FHA, and that
is an implementation commitment. We would expect that each agency can publish a
time frame with milestones for migration, and express a plan for moving toward
the architecture, and calling out those elements of FHA that are relevant that,
once that plan is published, we can monitor progress against the plan for each
of the relevant systems.

Then we can describe and catalogue all the system elements that are
relevant to FHA that exist within the agencies.

So, when we talk about being aligned with the federal health architecture,
it really consists of these three components: a process commitment, an
architecture commitment, and an implementation commitment.

The partners in the federal health architecture have come together and
partitioned the federal health space into five different domains that
categorize different activities associated with health across the government.

They are access to care, population health, consumer safety, health care
administration, health care delivery services, and health care research and
practitioner education.

This was recently revised over the course of the last year, and has really
been scrutinized and there is a hard fought agreement that these are sort of
the umbrella that comprise the federal health enterprise.

FHA has work groups, then, that operate within those different domains and
currently has five that I will talk about here.

There is a food safety work group, and I will talk about the positioning of
the diagram in a moment, but there is a food safety work group.

They have really been taking on looking at the import process and really
have had a lot of success over the last year.

There is a public health surveillance work group, and they have been doing
a lot of good work in understanding what the public health surveillance
business drivers are and processes are across different agencies.

There is an EHR, electronic health record, work group, and they have been
busy trying to track what is going on in the private sector, and also map what
the federal government is doing in relation to what is happening in the
standards world.

There is consolidated health informatics, which has just recently been
considered a work group of the federal health architecture. It is probably an
atypical work group, in that integration into FHA is still ongoing.

Then there is an interoperability work group, which is concerned about
technical interoperability among health care applications.

So, the green spikes that are going down are much more topical versus the
two blue that are going across, which we believe are applicable to different
domains and different work groups altogether.

So, when you look at where these fit in, relative to the umbrella of the
federal health enterprise, we have these work groups that are portions of those
different domains that I described earlier.

So, FHA is able to coordinate all of those disparate agendas and disparate
systems that I mentioned at the onset, and we have really then taken another
layer of that, which is to weave in the objectives of the strategic framework
for action, to guide what we do in the federal space with respect to the
federal health architecture.

So, this diagram just tries to get at the idea that, as an input, we really
want to start with the business drivers, that each entity that is involved in
health across the federal government has, and their requirements, and the
things that are driving what they are doing with respect to health.

When I say what they are doing, I am not talking about what they are doing
technically, but what they are doing as a health operation.

We then take those business drivers and we try to document all the things
that are going on in terms of all the business activities and then the
supporting information and data that it takes to accomplish those activities,
what components of applications and other things support those, and then what
technology underlies the implementation of those activities.

Once we are able to document our baseline with all of those things that
comprise the architecture, we then sort of partition it through this filter of
where does it fit in each of the domains, and then how do we arrive at a target
architecture that leverages the things that are going on, the areas of synergy
that are going on across all the different activities in the different
constituencies.

We also have a filter now, which is the President’s vision, which has been
encapsulated in the framework for strategic action.

So, by doing all of that, at the end we arrive at a target architecture
that not only supports the President’s goal, but unifies and reconciles what is
going on in the health enterprise.

So, if we have two agencies that are doing essentially similar things, and
they are using similar technologies, we maybe have an opportunity to unify what
they are doing, and better spend the dollars of the federal government in that
area, as well as take advantage of lessons learned and best practices.

Ultimately, for each one of these layers — the business layer, the
information layer, the service component layer and technology layer, we end up
with a reference model which describes the target architecture, and allows the
architects within the individual partner organizations to go off and to build
their target architectures that are specific to their designs, and then
ultimately migrate their systems to those target architectures.

So, the benefits of the federal health architecture are that it promotes
interoperability by trying to unify and take advantage of the commonality that
different agencies have, and to express use cases that they can work toward in
a common way, expedite data sharing to provide complete information, and it
enables resource sharing and enhances collaboration.

There is no practical way other than these types of consensus groups to
really facilitate this kind of sharing of information across agencies.

It helps secure funding for projects. Some people might debate whether it
helps secure that or not, but it does in the sense that, if we can go in with a
unified front and put forward a target architecture everyone is moving toward,
that concept can be funded and the manifestation of the funding can happen in
everyone’s budget. It facilitates decision making and provides an established
channel for coordinating these efforts.

So, that is sort of the nutshell of what the federal health architecture is
at a high level. There are some things that we have been really working to get
a handle on over the past few months.

One is what I described to you as alignment with the federal health
architecture is sort of our recently adopted view in FHA of how one aligns.

It is fairly new. So, we have to continue to define that and get buy in
from all of the participants, so that we can really have a unified position on
how one participates in FHA. Then we have to obviously be able to monitor that
alignment, and be able to measure progress against it.

Two, we have to understand how FHA and CHI relate to this new world order,
that Dr. Brailer just talked about a few minutes ago.

What does it mean in the face of having standards harmonization and product
certification and infrastructure certification.

What does it mean for the federal health enterprise, and how is the federal
health architecture and consolidated health informatics really integrate into
that world.

Then, as I alluded to, CHI’s integration into FHA is a fairly new thing,
and has had some obstacles, in the sense that our office just doesn’t have lots
of people.

We don’t have lots of excess capacity to do a lot of the work. So, it has
been an ongoing effort for us to try to integrate CHI into FHA.

So, I think that these are some of the things that we are working on as we
go forward. So, hopefully that gave you some idea about what the federal health
architecture is, and I think that one thing that we are also trying to
understand, although I didn’t list it as an issue is, as we start to integrate
the FHA and CHI into this new world order, what is the most effective way that
we can interface with this group, NCVHS, so that we can have as strong a
partnership as CHI experienced in its heyday.

MR. COHN: Lee, thank you very much. That was a very useful briefing on
this. Questions? I feel I should let Jeff ask the question he asked earlier
today. Do you remember it, Jeff?

MR. BLAIR: I am trying to remember.

MR. COHN: You asked Karen Trudel a question earlier about CHI.

MR. BLAIR: Oh, the status of CHI, yes. Lee, by the way, thanks so much for
being here and sharing the status of the federal health architecture with us at
this point, that you have at this point.

Clearly, there is a lot — you have so many things that you are trying to
integrate that architecture to, and have it responsive to, that it seems like
every constituent group is saying, how are you going to wind up doing this
without impacting things too much.

With respect to the consolidated health informatics initiative, maybe the
way I ought to ask my question is, within the FHA group right now, what is the
perception of what the CHI standards are. What is their value? What role do you
think they play in the FHA?

MR. JONES: The adopted standards themselves, or the group.

MR. BLAIR: Thanks for asking for that clarification, because I will just
speak for myself, the feeling I have is that the CHI standards are not just a
laundry list of standards.

They were developed from the standpoint of how do they meet specific health
care needs, and they were also developed in terms of their likelihood of how
they begin to create the information infrastructure, how they relate to each
other.

The example I would give is the way the core set of clinical data
terminologies were identified in a manner where they would be the reference
terminology, and a lot of other terminologies that can’t be migrated or changed
quickly map to those.

So, it provides a lot of the harmonization and systems integration in the
future, as well as identifying the standards that meet specific health care
needs. Maybe by giving you that explanation I wound up revealing what I hoped
you would say.

MR. JONES: So, all the things you said, that is my — no, I guess I would
answer that this way. I think that all of the work that was done by the CHI
group, certainly everywhere that I have gone has been held in high regard.

People have had high expectations for the ongoing CHI process, and really
have embraced the work that has already been done.

In fact, when I was talking anecdotally, I was talking to some members,
some people at a conference I was speaking to recently.

They asked me about the CHI standards and said — these were private sector
people — and they were saying, we were following what was going on, and we
really were encouraged by what CHI did, and we were waiting for sort of that
next step so that we could pick up those standards and move forward with them.

I think that that is what we want to happen. We want others to sort of take
the lead, or pick up the mantle that the government throws down, if you will,
in the form of those standards, and to adopt them even more broadly than just
the federal government.

So, the context of the office of the national coordinator, certainly we
have that same objective. Now, the other aspect to that is, are they complete,
meaning the CHI standards.

Are they complete? If they are, then complete with respect to what. I think
that CHI did a good job of outlining what they were trying to do, and choose
standards for.

What our office is trying to do. in the context of these RPs that David
talked about and other things, is to really establish what use cases the
industry values or prioritizes closely, to identify what standards are relevant
there, and where there may be gaps.

So, what I would hope would happen with CHI is CHI would be foundational to
any such discussion. In terms of how FHA views CHI, I think that, inasmuch as
the person responsible now for CHI is the same person responsible for FHA, Mary
Forbes, you know, I think she is not very schizophrenic in how she views those
things, but she views them as sort of hand in glove, the same process that is
ultimately supporting the goals of the national coordinator, and now Secretary
Leavitt.

So, that is a long winded way of saying, I don’t think that we have tried
to change what is the common or popular perception of what the promise of CHI
is.

We are just trying to figure out how does it fit in, not only with FHA, but
also in the larger context of what Dr. Brailer is charged with.

MR. BLAIR: Can I add one other piece, if I may? I am sort of jumping ahead
a little bit. One of the explorations and projects that we would like to move
forward with at NCVHS is building on those CHI standards, especially the
clinical data terminologies, the UMLS and how it links to all of the other
terminologies with an additional use case vision.

This use case vision is a very broad one. Actually, it is probably a set of
use cases, a broad set of use cases.

I am mentioning this for you to keep in your mind because, by the time we
come out with these recommendations, it may be many, many months.

We are calling on, you know, one of the individuals on the NCVHS that is
especially respected in the industry for his expertise, and that is Dr. Stan
Huff to take this lead on this entity, and that is to look at the fact that the
CHI Standards would get us close to having clinically specific data at the
point of care for the first time, and having it in a robust, comprehensive way.

Once we have that as a foundation, where you have it for patient care
purposes, for the first time we could begin to look at using derivatives of
that information captured once at the point of care, use derivatives for
reimbursement and for clinical research and for public health.

If you think about that vision, this is another, maybe, example of where
NCVHS — we will see how it plays out, but is offering some strategic guidance
and vision in terms of how health care information and policy can flow
together.

If you think about that vision for a little while, you begin to think of
tremendous cost savings and efficiency savings and time savings.

I am mentioning it — I am being an opportunist, because you are beginning
to think of where you go with the federal health architecture, and you are also
probably going to be maybe one of the folks who begins to evaluate the
responses to the standards harmonization RFPs, and you are going to be looking
at the use cases.

So, I thought it would be maybe helpful or useful for you to be aware of
the fact that we are heading down this path.

Now that I have said this piece, Simon, do we have the latitude of inviting
Stan to add any additional comments or thoughts to this particular direction?

MR. HUFF: He probably can. He can also invite Lee and Mary to join and
participate in some of the discussions, if they are valuable to you. Stan, did
you have a comment that you wanted to make?

MR.HUFF: I am happy to comment. I certainly support the idea of clinical
data re-use. I had a different question swirling in my mind related to CHI and
these other activities.

Don’t take this the wrong way. You are doing the easy part right now, which
is setting the standards and talking about it.

I have seen a certain tendency with the CHI activities and other
activities, for people to think — even agencies that participated in CHI to
say, well, that is for the other guys.

So, when it comes actually time to change what they buy or what they do or
what they implement, they think, well, but you didn’t really mean that I would
change what I am doing to conform to the standard.

To me, that is the real challenge, is what is the motivation for people to
change really, and do you have — I mean, in some sense, it starts at the top,
if people in these various federal departments and other things aren’t really
willing to change what they are doing, then this isn’t going to have the impact
that we hope it would have.

I mean, do you see a way forward where you could really have, if you will,
authority and responsibility for this in a way that you can affect change
within agencies that tend to ba autonomous at some level within the federal
bureaucracy?

MR. JONES: Well, yes, in the following sense — and I think I will try to
wind it back a little into the previous comment by Jeff.

Standards, by themselves, are not enough. At least that has been our
position. Usually when we make that statement we say that they are necessary
but not sufficient, and we go on to talk about infrastructure, et cetera.

Another portion that we don’t often talk about is this migration process
that you are alluding to. I think that also gets to the relationship of CHI to
FHA, inasmuch as FHA will incorporate the standards that come out of CHI into a
version which becomes a baseline.

Now, as I showed in my diagram, the vision is tha people’s architectures
start to come closer to the published FHA architecture.

At the end of the day, FHA or those standards are, one, forward looking for
target architectures, and not meant to be retroactively applied, necessarily,
and two, CHI has voluntary standards.

So, people are not forced, if you will, to adopt them. So, now, having said
that, that is in contrast to something, say, like a NIST FIPS process, where
there is a mandatory government standard.

Having said that, why come up with standards if you don’t plan on
implementing them. Well, it turns out there seem to be many different reasons
why.

MR. HUFF: To look good in public is one.

MR. JONES: Yes. So, I think what you are talking about is definitely an
issue. Two ways that we are trying to address it are, one, what I just talked
about, by really making the FHA process more integral with what the agencies
are doing internally.

So, it is not just a meeting that people come to, but rather, is written
into the DNA of how they do their own work.

Then, too, OMB is involved in this and has a stake. So, they, as an e
government initiative, they ask for regular reporting about what goes on in
federal health architecture and consolidated health informatics, and they also
take elements of what they believe FHA and CHI should be doing, and write them
into score cards for evaluation for different agencies.

So, that is sort of the enforcement part of it behind the scenes. Now, the
question is, how to make, how to balance that enforcement piece with the
practical realities of trying to implement things that are in target
architectures that, by definition, need some migration path.

It is not always straightforward to say when or how an agency should
comply, and you know, OMB often has a time based mechanism to try to move
agencies.

I think the agencies have been arguing to some extent that you need to have
some time based pressure, but you also have to take into account the steps that
it takes to get there.

What FHA is really trying to do is to illuminate what those steps are, so
that everyone understand what it takes to get there, and we can make some
rational decisions about how we migrate from one version of the architecture to
the next.

MR. COHN: Paul, I think we will let you be the last question.

MR. TANG: It mainly picks up on the two previous questions. It is still
around CHI. You mentioned this merging of CHI into FHA as an issue, and I think
you alluded to resources.

I guess, at first glance, one would have thought that, if you brought the
CHI activity into the FHA umbrella, you would have brought the resources in
with it. That wasn’t true? Is that the implication?

AUDIENCE: We have lots of money but no staff.

MR. TANG: I thought people were detailed into CHI.

MR. JONES: CHI was — so, people provided a lot of in kind sort of
services, as far as I understand. You can certainly correct me if I go wrong, a
lot of in kind sort of assistance and participation in CHI.

The actual footing the bill of running the program was largely borne by
HHS. It was sort of borne in a side kind of way.

We did successfully get some money that could potentially pay for
resources, but as was said, there is the circumstance of being in our office,
the office of the coordinator.

We don’t really have positions or billets where we can hire people to do
that work. We did approach partners and others about details and that sort of
thing, but resources are scarce all over.

So, people are willing to participate, but I think if you are talking about
dedicating a person who is going to spend all their time doing that, it was
difficult to find people who had resources who weren’t actively engaged in
whatever their day jobs were.

MR. TANG: So, they weren’t so kind.

MR. JONES: I don’t think it was for lack of desire. I think it was that
everyone is really busy.

MR. TANG: Then the second thing is a bit of a nuance on what Stan said. You
talked about actually a side effect of Thompson declaring that CHI standards
would be the federal standards.

The private sector said, oh, I had better pay attention. So, the double
edged sword of bringing it into the FHA is that it may appear more like a
federal health architecture, and of less relevant to the private sector.

Do you see what I am saying? There may be a little bit of an unanticipated
double edged sword, because part of the enthusiasm you reacted to, you said,
was people were coming up to you from the private sector saying, hey, I have
got to pay attention to this.

I wonder if that might get diffused a little, especially given what your
answer to Stan was, which is, you are supposed to go there, but there is no
enforcement behind just exactly when and who.

MR. JONES: I don’t know if I would say there is no enforcement, because OMB
certainly does participate actively, and they are very interested in people
adopting those standards.

I do think that is a fair point, though, about the perception that CHI has
sort of gone federal, if you will, and I think that is an issue with — I think
we would be more worried about that issue if it wasn’t for the FHA itself being
a part of the office of the national coordinator, which then has a very strong
private sector focus.

So, we are really trying — maybe I should have listed that as an issue
also, is this continual blending of what FHA is into what ONCHIT is trying to
do, and hopefully it would mute that kind of a response.

MR. COHN: Well, Lee, I actually want to thank you. I think this has been a
very interesting conversation. Obviously, I think the briefing is very useful.
I think you are hearing a set of issues and discussion items.

Now, we would like to have a close working relationship, and I am not sure
if we should call it CHI or FHA, reflecting the blend that we were just talking
about, but you have obviously had a lot to do with laying the foundation for
that.

Obviously, we are all aware that there are still outstanding issues there,
and we want it to be successful. Our subcommittee on standards and security has
been the group that has traditionally spearheaded that.

You heard part of the conversation from one of the co-chairs, Jeff Blair,
who was just talking, as well as Harry Reynolds over here.

I think we will be asking them to be in communication with both you and
Mary, because I think it could be something that was more thoroughly explored
in subcommittee work, where we hold hearings, have more involved conversations.

Clearly, there are a number of different things going on here, some of
which are like, well, gee, there are all these questions left over from last
time. Whatever happened to them.

It wasn’t just for standards. It was really a work in progress. So, we
obviously wanted to figure out some ways to be supportive and help make it
successful.

MR. JONES: I appreciate that.

MR. COHN: We are happy to help and you have our support. I really want to
thank you for taking the time, and obviously you have our support. Mary,
anything we can do to help also. So, thank you.

Now, with that, I think we will transition to Scott Wallace. Scott, do you
need a minute or two, or is everything set up? Okay.

Welcome, Scott. Scott is the chair of the Commission on Systemic
Interoperability, as well as the president and CEO for the National Alliance
for Health Information Technology.

As I disclosed in my disclosure period earlier today, I am actually a
member of the commission, and I want you to know that it has been a great
pleasure and delight. Scott is the chair, and he has done a great job.

I think we all sort of have to recognize this commission has not been
around for very long, and it is already being called upon to make a report in
the very near future.

I think that, given those time frames, Scott has been doing a great job. We
are obviously very pleased to have you joining us today to give us at least a
flavor of where the commission is now, and a view of where it is going to be
going.

Agenda Item: Commission on Systemic
Interoperability.

MR. WALLACE: Thank you, and I appreciate the opportunity to come and speak.
Simon and I talked a little bit before I agreed to do this, just because the
commission hasn’t issued its report yet.

The report will come out in October. I am not in a position to talk about
any of the recommendations that we are going to make because, as we speak,
there is an ongoing process of trying to define those recommendations and to
articulate them.

The journalistic dimension of not wanting to scoop oneself notwithstanding,
I couldn’t scoop myself if I tried. So, what I will do is kind of give you an
overview of the process that we are going through, what we are talking about,
the areas that we are focused on, and then hopefully answer questions, if you
have them, following that.

As you are likely aware, the commission was created in section 1012 of the
Medicare Modernization Act. It was really an effort on behalf of a number of
different interest groups to avoid a situation in IT that they saw having
happened in HIPAA, specifically that the federal dimension of it went forward
very quickly without, in their view, sufficient input from the private sector
side.

So, this commission was created as an exclusively private sector entity, to
really offer to the Secretary, to the Congress and to the President
perspectives on how this process of health care IT ought to work.

We have evolved very clearly toward trying to articulate this vision of
health care IT. Dr. Brailer, as is typical, was far more articulate in talking
to the end state of the consumer vision and all of this.

Really, it is this notion that, if you are in this little clique that many
of us are in, you talk about health care IT and you talk about standards, ad
you talk about interoperability and, if you talk to anyone outside of the
clique, they have no clue what it is that you are talking about.

So, if there is really one thing that I think the commission can do, it is
to broaden the appeal of this, not just to consumers who are non-initiated, but
to some of the thousands of staffers that are up on the Hill, and to other
people who are involved in government and involved in health care.

We have divided our function really into four pieces. There are slides. It
is kind of an evolving notion. So, there are slides to address three of them.

The consumer piece, there is a lot that we are looking at on the provider
piece, and then on the financing options.

We are trending toward — I will keep looking to Simon to see if he nods,
to see if we have got that vote lined up — we are trending toward having a
fourth section that looks at the government role as well.

The real idea around the consumer section was that there is an enormous
amount of work on pushing health care IT. How do we get doctors to use it, how
do we get clinics to pick it up, how do we get hospitals to deploy these
systems, how do we get the payers to come in, and what is the role of employees
in putting in money, and where does the federal government go.

As we stopped and looked at that, we realized that there was very little
pull. Most broad based technologies don’t get there strictly through a push.
They get there through a pull.

Ivan Seidenberg, who is chairman and CEO of Verizon Communications, always
holds up a cell phone and said, you know, we built a network for these things
and the federal government didn’t put in a dime.

We built this network because we put devices in people’s hands, they saw a
value in that. They send us money every month, and we use that money to keep
expanding the system.

So, there is this idea that, if we can articulate the value proposition to
consumers, maybe we can do a little bit more to pull this technology through,
instead of trying to jam it all through the keyhole.

The consumer issue, we think, really breaks down into kind of three
dimensions that we spent a lot of time looking at.

The first is what one of the witnesses that came in front of the commission
referred to as the document game. This woman named Peggy Franks has a
22-year-old daughter with a chromosome disorder that I believe is unique in its
description.

As a result, her 22-year-old daughter has been hospitalized for extended
stays 13 times. Peggy, in pretty moving words, said, every time Ashley finishes
a hospitalization, we begin the document game again.

Everybody kind of looked and she said, you know, the game that you have to
play to get the documents together. She said, I am one of those chronic care
parents. I have my daughter’s wheel chair that I push with one hand, and a
trolley that I pull with the other hand, carrying all of her records around.

Just getting those records requires an enormous amount of gamesmanship, and
it shouldn’t. So, what we started focusing on is not just these questions about
technology and interoperability and standards, and not just the issues around
confidentiality, but how much are we hurting regular people, not killing them
because we made an error, but hurting them in their everyday life because they
don’t have access to this technology, because the systems are set up without
them in mind.

So, a lot of the focus of the report is how do we end the document game.
The second piece of this is that nonpartisan in Washington means D versus R in
the rest of the world.

There is nobody, as Ed said, against this. It is just that no one really
understands what it is that we are trying to do and why it is important to
them.

So, how do we articulate that, in a way, and really exploit the fact that
there aren’t enemies of this. It is about as motherhood and apple pie as you
can get.

We decided that the best way to do that, really, was a lot of personal
stories. So, our staff has been out interviewing individuals, kind of regular
people, in their use of IT, their experiences in health care without IT, their
experiences pre and post-IT, really just to try to get this picture across, so
that it isn’t just about the sterile words of interoperability.

Clearly, the major fear factor in everything we do is this issue of
confidentiality. We have had the wonderful good fortune of conducting our
meetings during the course of the disclosures around mastercard and lexus
nexus, and it seems like — I can predict the next one, because out next
meeting is July 12. So, the next set of stories is going to break July 11.

It does highlight the question of what are we going to do about
confidentiality, how are we going to address this, and how will we assuage the
fears of people about this unknown system, and what impact it will have on the
confidentiality of their data.

I hope that you note that I am using a different word than is typically
used, and it is by design. We are thinking of this issue, not in terms of
privacy which, in Washington and elsewhere, is a very loaded political word,
but in terms of confidentiality.

The point of creating an electronic health record is not that it not go to
anyone else. We don’t take doctors notes and send them to Fort Knox. You take
doctors notes and all the other medical records, and we want to share that, but
we want to share it in a very controlled way.

So, the issue isn’t specifically privacy. The issue is confidentiality. How
do you control that disclosure, not how do you always unequivocally prevent
disclosure.

Then the final point is this major question around connecting patients and
data. It, as well, has the third rail word of UPI. We will probably stay away
from that phrase.

By and large, there is a major uniform patient identifier, the national
patient identifier, all the other — I get kind of jittery if I even utter them
in this building.

There is clearly a major question that comes up, how will we link patients
or consumers and their information. So, there are a lot of issues that have
been raised on that. We think that there is probably an opportunity to make a
recommendation in that area.

The provider issues really get to something that Harry Reynolds raised
earlier, this cultural issue. From our point of view, the cultural issue really
is one of consistency, and we speak of it in terms of standards, the verb,
rather than standards, the noun.

Everyone right now talks about standards, which do you transfer data at 32
bits or 64 bits, and on and on, and the technical standards.

What we are really looking at is, you can’t deploy consistent information
technology systems into a world of completely diverse care processes, because
you are trying to use a standardized tool for a non-standardized process.

So, we are spending a lot of time looking at how do you address that issue
of consistency. Again, without kind of wallowing in the really nitty gritty
details of how it comes across inside baseball circles, but really how do you
address it in a way that regular practitioners understand.

Spending a lot of time looking at the business case for quality, it again
is one of those dichotomies between people on the inside and the rest of the
world.

If you track all of the consumer polls, the first thing that consumers
worry about is cost. The second thing that they worry about is access. The
third thing that they worry about — and it is about four orders of magnitude
below the first two — is quality.

There is no sense of the quality and that is part of the reason that that
is not a driver in a more aggressive way.

So, we are looking at what are the business case issues for quality, how
can we get those out there. Then a third issue that really gets at the heart of
the challenge of interoperability is that it has a dramatic impact on
competition among providers.

We think we ought to highlight that, we ought to talk about why it is
significant and why it is ultimately not the number one issue that providers
should be focused on.

On the financial side, consumers and the money question really gets at this
point that we — I tend to like the conversations that used to go on.

The alliance would convene these different groups, and you would have a
provider and a payer and an IT vendor, and you just give them each a big pile
of rocks, and then you stand back, and they just stand and throw rocks at each
other in this triangle.

One of the things that we thought about is, if consumers really see a value
for this, maybe consumers can help to pay for this, and then we can break this
triangulated rock throwing session of saying, no, you should pay for it, no,
you should pay for it. There really is a source of funding there that nobody
has looked at a lot.

The payers versus insurer’s point is that it is increasingly clear that
large employers have a point of view in all of this.

Ivan Seidenberg makes the point at least three times every meeting that he
pays $3.6 billion a year for health care.

That is a different perspective in his mind than Vicky Greg, who is from
Tennessee Blue Cross Blue Shield, and there are some issues there that we want
to really explore.

We have been doing some research at the staff level and trying to highlight
the role of health care in labor disputes.

Kind of anecdotally, I went back about five years on three major
publications and checked for every single labor dispute that was covered.

Ninety-eight percent of them, which was all but one, mentioned health care
as an issue in the labor dispute. So, clearly, there is a broader connection
point to be made here between the role of health care IT, making health care
safer and more efficient, and these broader issues around labor disputes.

The federal role in score keeping really comes down to this problem that we
have, that the government can’t differentiate between investments and expenses.

I am a business guy. I am not a health care guy. I came into this and was
shocked, when I sat down with Kerry Weems, to go through government accounting,
and to realize that they don’t have a category called investment.

You know, if you spend it today, then it is spent, and to think that we
have a federal government that runs on a cash, not accrual basis accounting
system, is pretty remarkable.

So, one of the things we are doing is looking at how can we advise the
congress on a more appropriate way to do the score keeping of the investment in
health care IT.

Then the last thing is, maybe typical of the way all of the world works,
people outside of our little circle are acutely aware of the failures of health
care IT, of the big CPOE disasters, and some of those things that haven’t
worked well.

There are almost no good stories out there that are broadly disseminated
about how health care has done IT really well.

So, one of the other pieces that we are doing, along with this consumer
piece, is to tell some of these stories in regular words, so that people
understand that, in fact, this does work, and it is workable, and we can get
some successes and some benefits.

The book that we are writing, the report, we really focus on a very short
set of recommendations. Dana Hazza, who is the director of the commission, took
all of the old reports, the IOM reports, and all of these other commissions,
and it is a fairly impressive stack. I didn’t realize that health care
generates quite so much paper.

They went through them — she came walking in. I was over at NLM and she
came walking in with this thing on a trolley, and I said, you know, is this
Peggy Frank’s medical record? She said, no, these are all the reports that we
have been going through, all the commission reports.

So, I went through them all, and pulled out all the IT recommendations, and
it made a stack that was a good inch and a half thick.

Out of them I think there were 10 or 12 that actually have been
implemented, and it was a little bit of a wake up call to all of us about,
let’s not worry about putting 150 recommendations out. Let’s see if we can get
five. Could we get five that we can agree on that maybe could be implemented
that we could measure, that we could do something with.

So, we really focused on this very discrete list of very short term,
actionable recommendations. We have hired a speech writer instead of a report
writer.

I spent a fair bit if time with Illinois’ former governor, Jim Thompson,
who was on the 9-11 commission, and he pointed out that part of the reason for
the success of that commission’s report was that you could read the book.

I mean, it opens — I don’t know if any of you have read it, it opens like
a novel. I mean, they are talking about the bright blue sky and these guys who
are walking through the airport. I am not quite sure we will get to that level,
but there is something to aspire to.

The goal really is reaching all the audiences, and we have spent a
prodigious amount of time talking about who are our audiences.

Clearly, it is the Secretary, clearly it is Dr. Brailer and Dr. McClelland.
Clearly it is the White House and the leaders of congress who appointed all of
us.

It is also more broadly disseminated than that, to all of the other people
in congress and in the broad health care community, the docs who tend to think
that IT is something that, if they ignore it long enough, it will go away, and
also to consumers. If we can’t make this message clear to people, then we have
failed.

The report comes out October 24. I realize that, in government calendaring,
a report that is released on October 24 means a report that is finished on
September 7, which costs us five weeks and a great deal of panic at one point
several weeks ago. So, it should be finished about the middle of September.

Dana is the director. You may recognize her from her maiden name, Dana
Pavey. She was the health care analyst with Newt Gingrich at — I forget the
name of Newt’s entity over there.

She is doing an absolutely extraordinary job, I think, putting together a
team in a very short time. This all started around January, and we are coming
out with a report in September.

She has got the team organized, and she is over at NLM. We are getting
phenomenal support from them. As Dr. Brailer indicated, we have a very
good working relationship with the ONCHIT office, and just extraordinarily good
help and free flowing help from the ONCHIT staff.

There is Dana’s contacts, in case you would like to send anything to her.
That is the overview. I hope that is helpful.

MR. COHN: Yes, Scott, thank you.

MR. STEINWACHS: You indicated you might add a chapter on the government
role. I was wondering if you were going to say anything about what might be
some of the thoughts in that.

MR. WALLACE: No, not right now.

MR. COHN: Well, that was quick.

MR. WALLACE: The difficulty here, many of you may know Gary Mecklenberg,
who is the CEO of Northwestern. It is at least a twice a week occurrence that I
get a phone call or an e mail from Gary and he says, this schedule is just
impossible, we can’t do this. This is an irrational way to work, this is not
logical.

I was just up and talking to Senator Frist this morning and he said, now,
you guys are going to be finished on time aren’t you? I said, yes, sir, we are
going to finish.

So, the things that I put on here are really things that — actually, Dana
wrote these slides up. They are things that I think there is pretty broad
agreement on, but it is not finalized.

The government piece, I think, is very much in flux at the moment, and I
wouldn’t really feel comfortable to go into too much of it.

MR. TANG: Since I have worked for Gary before, you can tell him I
understand accelerated time scales.

MR. WALLACE: But I don’t think he does. That is a 15-year strategic plan. I
am a business guy, and I have never seen anything like that.

MR. TANG: As I listened to you — and I think the report was excellent — I
see a lot of opportunity. I also like your approach a lot. I mean, it is
typified by your hiring a speech writer, and the stories, the personal stories.

I also see the opportunity in your short-lived tenure — because you
basically can talk about some of the hard issues and get out before the rocks
fly.

In a sense, you said you were a little scared about uttering UHI here. Try
Chicago, and I wasn’t even there.

So, it strikes me that you are on your list — we don’t know what is in
your report, but you have a lot of these tough issues, like the linking, like
state privacy laws that interact and contradict each other, like the need for
consumer pull.

That is not controversial, but you can make some recommendations, I think,
that can have some long lasting effects, partly because you aren’t long lasting
in the sense of having to live with local consequences.

MR. COHN: Scott might have to change his name, though.

MR. WALLACE: I have zero political aspirations. I told the Secretary, you
know, I am happy to take on any of these.

MR. TANG: I actually think it would be very good to hear solid and frank
and open discussion on some of these points that you raised in your
presentation.

MR. WALLACE: It is interesting, the challenge that we are confronting, and
we have been talking with a lot of the speech writing help, and some of the
more savvy policy and political analysts around.

The question is, how do you bring up those topics without making that the
focus of the report. Your report, through IOM, is a good example.

There was a huge amount of fight over whether the number was correctly
98,000 people. Well, if it is six, if you happen to be friends with one of
them, that is a pretty big deal.

That whole emphasis got lost, because the fight was over, is this the right
number or not. So, we are trying to figure out how can we make his broader
message without getting sunk on some of these more controversial issues.

It is just kind of a common sense test. I mean, when we go and talk to
regular people outside of health care about electronic health records, trying
to sense what are their concerns on the confidentiality side, and how do you
begin to assuage those.

MR. FITZMAURICE: Thank you, Scott. I appreciate as well your willingness to
come here and give a good presentation on what you are going about, how you are
going about it, and the issues.

Now, one of the things that I always thought the major charge to CSI was,
was to create a road map for health data standards development and
implementation.

I notice, by looking at your web site, that Bill Stedd(?) has developed a
model or prototype of one for electronic prescribing. I pulled it down from
your web site. I didn’t see it in your slides, and do you plan to have a road
map in your report for standards?

MR. WALLACE: I think that we will have several road maps. I don’t know that
they will be focused expressly on standards.

The logic of that, really, is that I guess I would describe it as statutory
interpretation on my part. When I have been up on the Hill talking to people
about what do they mean by standards, most of them don’t mean what, Michael,
you mean when you talk about a standard.

So, I guess two things came together. One was the realization that what we
really needed to do was articulate a broader consumer vision.

The second was the realization that, with the exception of a couple of
extraordinarily bright people like Simon and Don Detmer and Bill Stedd, most of
the people on that commission are not really standards — are not in a position
to articulate a grand vision of standards.

I, for one, am not. If you look at kind of the experience of the folks that
are on there, I think we are probably better off to articulate this business
rationale and this business case, and hand a lot of that standards piece over
to Dr. Brailer’s office, to this standards rationalization or harmonization
initiative that he put out in the RFP, and ultimately to AHIC.

MR. FITZMAURICE: I will say it is probably an impossible job to do, and to
do well, and an impossible job to do in a year. I think that, to make progress
and move us along would be a good accomplishment.

MR. WALLACE: Yes, we have nine months. I was really complaining bitterly
about nine months until my wife was telling me about pregnancy.

MR. HOUSTON: It was interesting, in your presentation you talked about
provider issues of interoperability and competition.

I think one of the things I guess I have a question about is the same
concept, but with regard to HIT vendors themselves, and what are the issues
that you see in terms of trying to provide interoperability.

I think we sense, at times, that the vendors don’t necessarily want to play
in the same sand box, let alone the providers or others. What are your thoughts
on that, or do you see issues in that regard?

MR. WALLACE: My own perception, as a purchase of technology in businesses
that I have built and run, is that consumers dictate markets.

I have never had a vendor of anything — hard technology, soft technology,
intellectual property — who really wanted to work closely with three or four
of his or her competitors.

So, my own take on this is that we may have some truly enlightened vendors
who, motivated by the spirit of good will and harmony and life, want to
collaborate and coordinate and cooperate with their competitors.

I think most of them aren’t going to be that way, and I think that
ultimately it is the demand for products that meet certain specifications that
will lead to interoperability.

If you follow that line of logic, what it suggests is that you have to
overcome the issues of why providers themselves may not be terribly keen on
interoperability.

One of those little whispered around secrets is that most physicians don’t
really want their patients to have portable data.

It is a whole lot easier, if you have an IDN, to keep it all in the family,
and keep people bouncing within your own system.

So, from our point of view, the early analysis was, we really need to focus
first on how do we address this issue of interoperability as a cultural issue
among providers, so that they start to spec it, and they start to demand it.
Once they start to demand it, the vendors will really not have a lot of
options.

MS. MC CALL: Thank you very much. This is absolutely fascinating. A couple
of questions. This has been a very compressed process.

Yet, for everything that you are signalling, it sounds like it is going to
be a very valuable product. So, my first question is, what were some of the
elements —

MR. WALLACE: We are just trying to boost advance sales of the report.

MS. MC CALL: That is right, I am sold, if I can get an autographed copy.
So, what was it about that process that made it so successful, because there
may be some things that we are going to do in the next year, so where some sort
of compressed process might be valuable to understand, but it may require
certain things. So, that is question number one.

Then question number two is, again, you get to go away and you won’t be hit
by rocks, we hope, but how would you define success, then, if you have a wish.
What is your greatest wish for change that you are able to catalyze.

MR. WALLACE: In terms of your process question, Dana and I spend days and
days and days, kind of, looking at this and then polling different
commissioners.

We had a pretty good sense of what we could accomplish, how much time we
could put into the investigative phase, how much research we could compile, how
many people we could talk to, how many pages we had to put up there.

Then we started talking about where the strengths and the perspectives of
the commissioners were, and also what was already underway, to Michael’s point
earlier.

I mean, there is an enormous amount of work being done around standards,
and some extraordinarily good work in terms of competitive in odd ways, but
between the CCR initiative, and the HL7 CDA initiative, and a bunch of pieces
along that path.

I think we started looking at what we were charged with when the statute
was written, versus where the world was when we started to convene and what the
needs were as we saw them.

In the early conversations that I had with Secretary Thompson and in
subsequent conversations with Secretary Leavitt, they kept coming back to this
point that we need a vision. There is no broad vision outside of the folks
within health care.

I think that really drove a lot of it. I think Ivan Seidenberg was
extremely influential in saying, I don’t know who you guys are looking at to
pay for this. Consumers will pay for it if they understand what the value of it
is.

That was, I think, a real epiphany moment, but mostly I think we just
focused on where did we think we could be effective, what did we think that we
could do, which kind of leads to the second piece, what would be success.

I would be very pleased — I guess one success is if I can get my mother to
actually say Commission on Systemic Interoperability.

We call it CSI DC. It sounds a lot more hip that way. It really is, can you
get people to understand the promise of electronic health records.

By people, I mean regular consumers. I mean, not patients, not chronically
ill, the parents of chronically ill children. I mean regular people who walk
in, who go to their physicians and say, I order my groceries on line, I pay my
bills on line, I schedule my PTA conferences for my kids on line, and I just
spent 45 minutes on the phone waiting for your scheduler to give me an
appointment three Thursdays from now.

This is nuts, and get physicians to like the idea that, rather than a paper
bag full of pill files, there is a record of the medications people are on.

I don’t think that as a group — we are so focused no how are we going to
do this, how are we going to get the technology there.

The technology is not that tough. I come from a couple of industries where
we have used technology really effectively. The data bases exist. You can put
it in, you can pull it out, you can ship it around.

I ran a mining company from a little tiny town outside of Chicago. I could
turn on production in South Africa and ship it to Namibia, and pull product out
of Namibia and get it into Peru before I had coffee in the morning.

Meanwhile, I have to go through 45 minutes to find out whether my kid has
had his inoculation so he can play soccer, or something. It just doesn’t make
sense.

I think what we have to do is get people to expect more. If we can raise
the bar of expectation so that, when people walk in, they ask their doctor, why
don’t you have this. I would love to have people start breaking the clip
boards.

MS. MC CALL: Like I am mad as hell and I am not going to take it any more.

MR. WALLACE: Right now, people don’t understand this. When we talk to them,
we talk to them about an interoperable data transmission system. What the heck
is that? Nobody knows what that means.

If you talk to them about, you don’t have to fill out forms any more, and
we will know if you have got the medications, you don’t have to remember which
ones you took, and we will give you the reminders, those kinds of basic
benefits, I think the web and electronic technology is at a point where people
can get that.

If you go back three years ago, nobody trusted on line banking. If you go
back five years ago, nobody trusted on line stock trading. All these things are
routine and common now.

We are at a point where people can get that, and it coincides with a need
within policy makers to make it available.

I think if we can spur the demand, if we can make it a common issue that
people will understand, we will have succeeded.

MR. COHN: Kevin, I think you have the last question, and then we will wrap
up.

MR. LOCALIO: Just a curiosity, because I think you are right, this is all
contingent on creating pull in the market, and unless we do that, we are always
going to be trying to push something that people just don’t see the value in.

You use the example of a mother with a special needs child, which really
illustrates the need, but of course that is a really small subset of people not
sufficient to create a broad enough demand.

However, I would think that, in the senior population, in which there is a
higher prevalence of chronic disease and frequent utilization, there is an
opportunity there, perhaps, to start creating this awareness and pull.

I am just curious. Did you interface with advocacy groups for the senior
population like AARP, and where are they on this?

As a matter of fact, they may have testified here. I don’t know, but are
they out there beating the drum for this with their constituency?

MR. WALLACE: I obviously won’t speak at all for the AARP. In terms of what
the commission did, we have done a little bit at the staff level.

We got, what was it, nine meetings, 10 meetings? So, we started out trying
to actually have people come and testify and present information and you guys
know first hand the tediousness of that, and the pace of it.

So, we haven’t done it through that means. We have engaged a communications
firm for the commission itself, to try to do some of that outreach, as well as
to help us choreograph the release of the report.

The real goal of the report is not to see if modern health care will cover
it, but to see if it will go in USA Today and whatever those morning news shows
are.

MR. LOCALIO: Your target constituency is your warmest group.

MR. TANG: The IOM was pleased when we got into Family Circle, because that
is the health care manager group.

MR. COHN: Well, Scott, I really want to thank you. This has been a very
useful and, I think, enlightening conversation, certainly for the committee,
and gives them lots to think about. I expect that we will be asking you to come
back in November when we actually have —

MR. WALLACE: When I have something I can talk about.

MR. COHN: Well, actually you had something to talk about, but actually will
have the final report. I know Carol said — I think she was thinking about the
success of all this stuff, well, we need to see the report to make sure, to
know what we have.

I think it is a very interesting process, certainly an accelerated process
along the lines of what we were talking about earlier today with the
Secretary’s initiatives, where things are really going to be sped up.

MR. WALLACE: I think Dr. Brailer has done a very good job of integrating
this into the broader plan. One of our initial concerns — and I have heard it
expressed in things I have read that you guys have done — is how do you make
sure that what you say gets some action. The creation of AHIC, I think, gives
us a vehicle to know that somebody is going to pick this up.

MR. COHN: Thank you very much. This, I understand, is the last full session
for today. What is going to happen now is that we will take a break for 15
minutes. The subcommittee on privacy and confidentiality and the NHII work
group comes back here.

The NHII work group, I think, will be involved with the first part of the
conversation around the letter, and then the privacy committee will be dealing
with plans for their future hearings.

That is sort of the plan for this room. Down in 305-A is the subcommittee
on populations. Just to remind you, we have got subcommittees on standards and
security at 8:00 a.m. tomorrow, as well as the work group on quality.

They are both on the third floor. The first one is in 325-A, the work group
on quality is in 305-A. Then we move into our sessions.

We are going to be having presentations pretty much until noon. There is
actually going to be a break between 9:00 and noon, even though it never showed
up here. You can be guaranteed that.

MR. BLAIR: Could you clarify, if I may, so you are saying standards and
security, as a breakout group, won’t meet until tomorrow morning.

MR. COHN: Yes, from 8:00 to 8:50. That was done with your permission, Jeff.

MR. BLAIR: That is fine. I think the agenda from last week, I think, was
different, and I just was making sure that I heard it correctly.

MR. COHN: Now the question I would have for you all to either decide now or
decide tomorrow morning, we have groups in the morning, and then we basically
don’t have any action items for decision, but we do have obviously report outs
from the subcommittees and work groups.

Now we can either, at noon, take lunch for an hour and come back for
probably another hour’s worth of work, or we can take a short break around
noon, come back, and finish up by probably 1:15, 1:20.

I would actually be happy to do either. I am only reflecting on this, it is
typically how we used to run the standards and security subcommittee, to try to
get people out in a reasonable fashion. What would be your preference? Would
people like to work through lunch?

MR. BLAIR: I move that we accept that motion.

MR. COHN: Okay, I am happy to run it either way. I just wanted to give you
an option on that.

MR. HUNGATE: I would like to make sure the quality work group has a little
more time than I typically take to talk about the meeting that we held earlier
this month.

MR. COHN: What does that mean, Bob?

MR. HUNGATE: We haven’t had our work group discussion tomorrow morning. So,
I can’t tell you what that is. I think we, as a work group, felt that we spent
a very productive day, much at your original suggestion.

MR. COHN: And I certainly think we can give you five or 10 minutes.

MR. HUNGATE: Five or ten minutes will do it, but it I trigger more
discussion than that, I won’t be blamed for it.

MR. COHN: Anyway, with that, why don’t we break and we will reconvene
tomorrow morning. [Dinner logistics.] We will adjourn the full meeting, then,
until tomorrow.

[Whereupon, at 3:30 p.m., the meeting was recessed, to reconvene the
following day, Thursday, June 30, 2005.]