[This Transcript is Unedited]

DEPARTMENT OF HEALTH AND HUMAN SERVICES

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

March 4, 2005

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

Proceedings by:
CASET Associates, Ltd.
10201 Lee Highway, Suite 180
Fairfax, Virginia 22030
(703) 352-0091

TABLE OF CONTENTS

P R O C E E D I N G S (10:05 a.m.)

Agenda Item: Call to Order

DR. COHN: I want to call this meeting to order. This is the second day of
meetings of the National Committee on Vital and Health Statistics. The national
committee is the main public advisory to the U.S. Department of Health and
Human Services on national health information policy.

I am Simon Cohn, the Chairman of the committee, and the Associate Executive
Director for Health Information Policy for Kaiser Permanente.

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

With that, let’s have introductions around the table and then around the
room. For those on the national committee, I would ask if you have any
conflicts of interest related to any of the issues coming before us today,
would you so publicly indicate during your introduction?

Obviously, after the introductions, we’ll talk about the agenda and other
issues for the day.

Jim.

MR. SCANLON: Good morning, everyone. My name is Jim Scanlon. I am with the
Office of the Assistant Secretary for Planning and Evaluation here in HHS, and
I am the Executive Staff Director for the full committee.

DR. HARDING: I am Richard Harding. I am Chairman of Neuropsychiatry at the
University of South Carolina, and a member of the committee. No conflicts at
the present time.

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

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

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

DR. HUFF: Stan Huff with Intermountain Healthcare and the University of
Utah in Salt Lake City, a member of the committee and no conflicts for any
subjects today.

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

DR. SCANLON: Bill Scanlon with Health Policy R&D, member of the
committee and no conflicts for today.

MS. BEREK: Judy Berek, CMS liaison to the committee.

MS. MC CALL: Carol McCall with Humana’s Center for Health Metrics. No known
conflicts for today.

DR. MAYS: Vickie Mays, University of California, past member of the
committee. No conflicts.

DR. LOCALIO: Russell Localio, University of Pennsylvania School of
Medicine. Member of the committee. I have no conflicts.

DR. LENGERICH: Gene Lengerich, Penn State University and former member of
the committee. No conflicts.

DR. ROBBINS: Aldona Robbins, Board of Scientific Counselors, National
Center for Health Statistics and – liaison to this committee.

DR. SONDIK: Ed Sondik, Director, National Center for Health Statistics,
liaison – is that the right term? – to the committee.

MR. MELNICK: I’m Dan Melnick. I am a consultant to ASPE, and I am here to
make a presentation a little later on in the morning.

DR. FITZMAURICE: Michael Fitzmaurice, Agency for Healthcare Research and
Quality, liaison to the committee and staff to the Subcommittee on Standards
and Security.

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

DR. CARR: I’m Justine Carr, member of the committee, Beth Israel Deaconess
Medical Center. No conflicts.

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

DR. TANG: Paul Tang, Palo Alto Medical Foundation, Sutter Health. Member of
the committee. No conflicts.

DR. STEUERLE: I’m Gene Steuerle from the Urban Institute. As far as I know,
I have no conflicts, other than I used to work with Aldona Robbins, and so I’ll
probably tend to agree with her. (Laughter).

MR. REYNOLDS: Harry Reynolds, Blue Cross and Blue Shield of North Carolina.
Member of the committee and no conflicts.

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

DR. LUMPKIN: John Lumpkin, Robert Wood Johnson Foundation. I have a
teenager, so I’ve got a lot of conflict at home – (laughter) – but none that
apply here.

MS. GREENBERG: That is an old favorite line here.

Marjorie Greenberg, National Center for Health Statistics, CDC, Executive
Secretary to the committee, and, fortunately, I do not have any more teenagers.

MS. DAYTON: I am Liza Dayton with the Agency for Healthcare Research and
Quality.

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

MS. WATTS: Patricia Watts, Veterans Health Administration.

MS. STITSEL: Kim Stitsel(?), Office of Disease Prevention and Health
Promotion.

MS. TRENTIE: Nancy Trentie(?), American Psychiatric Association.

MS. POKER: Anna Poker, staff lead to the Quality Subcommittee and staff to
the NHII.

MS. DAYTON: Do it again. I am Liza Dayton with the Agency for Healthcare
Research and Quality.

MS. PICKETT: Donna Pickett, National Center for Health Statistics, CDC and
staff to the Subcommittee on Standards and Security.

MS. BOWMAN: Sue Bowman, American Health Information Management Association.

MS. BURWELL: Audrey Burwell, Office of Minority Health and lead staff to
the Subcommittee on Populations.

MS. GRANT: Miriam Grant, Office of Minority Health.

MS. FRANKLIN: Angela Franklin, Blue Cross Blue Shield Association.

MS. HOLMES: Julia Holmes. I am from the National Center for Health
Statistics, and I am staff to the Workgroup on Quality.

MR. HITCHCOCK: Good morning. I am Dale Hitchcock. HHS, Office of Science
and Data Policy and staff to the committee.

MS. WILLIAMSON: Michelle Williamson, National Center for Health Statistics,
CDC and staff to the NHII Workgroup.

DR. EDINGER: Stan Edinger, AHRQ and staff to the Quality Workgroup.

DR. COHN: Okay. Well, welcome, everyone.

Before I start out with the agenda, I just want to take a moment and
acknowledge a couple of individuals, and, I mean, we talked yesterday about
people who were going to be finishing their terms on the committee. Gene
Lengerich was not there at that point. We did say nice things about you, but,
now, since you are here in person, we, obviously, want to thank you for your
contribution to the committee, and especially the Subcommittee on Populations.
So thank you for your contribution and participation.

DR. LENGERICH: Well, you are welcome. It has been my pleasure, and I look
forward to being that free consultant in the future. (Applause).

MR. SCANLON: We have a special appreciation from the Secretary.

DR. COHN: Okay. We actually have a certificate for you from the Secretary,
along with a letter, and it reads, “Dear Dr. Lengerich, it gives me
pleasure to award you this certificate of appreciation for four years of
service to the Department as a member of the NCVHS. This committee is one of
the oldest and most prestigious advisory groups serving the Department. Its
recommendations have helped shape health statistics, health data standards and
epidemiology for our nation and have had a profound impact on new legislation.

“Your knowledge, expertise and experience have contributed greatly to
the excellent work of this committee. We wish particularly to commend you on
the time, effort, leadership and counsel you provided as a member of the
Subcommittee on Populations, which we already referenced.

“Only the best are asked to serve, and we are proud to have had the
opportunity to associate with you in this endeavor. Should the occasion arise,
we would like to feel free to call upon you for further assistance.”

And it is signed Michael Leavitt.

MS. GREENBERG: That’s the clicker(?) last line.

DR. COHN: (Laughter). As Marjorie has commented, we don’t let people off
easy on this committee. So thank you, and this is your –

MR. SCANLON: We’ll give it to Gene – You’re in the reserves now.
(Laughter).

DR. COHN: Yes. Yes.

Now, I also want to acknowledge Aldona Robbins. I don’t know whether this
is your last session or not. We were unsure about that one, but you are,
obviously, as I understand, finishing your term on the Board of Scientific
Counselors and had been liaison to the committee, and, obviously, want to thank
you for your participation and involvement with us. So thank you.

DR. ROBBINS: Well, thank you. I have enjoyed it and learned a lot.

DR. COHN: Yes, and we may very well see you in June, too. So we’ll –
(laughter).

DR. ROBBINS: And you very well may, and if not me, someone even better. So
–

DR. COHN: Okay. Well, let me just talk about the agenda for just a second.

We have asked – well, actually, John Lumpkin, as retiring chair, has
actually asked to make a few comments, and we are going to actually let him
talk to us for a couple of minutes, right after the agenda, but I –

Obviously, John will start out. Then we will have a briefing, a report from
the National Center for Health Statistics, Ed Sondik, as well as an update from
the Board of Scientific Counselors, Aldona.

Then, we are going to be talking about geocoding, Dan Melnick and Andrew
Dent.

Now, I want to ask the full committee, we obviously have a couple of work
items following. Right now, we are scheduled to take a lunch break and then
deal with those. Would it be in the interests of the full committee to just
continue – taking like a five-minute break and finishing early? Would that work
for everyone?

MR. BLAIR: Yes.

DR. COHN: Well, as I said yesterday, we try to finish on time, and,
actually, in the tradition of our departing chair, we actually try to finish
early. So we will do the best we can. Obviously, I can’t tell you when the
final end time is. It will basically depend on the letters that we still have
to consider, but hope – we will certainly, hopefully, finish in the one-ish
time frame or whatever.

So with that, John, I am going to let you lead off, and, obviously, thank
you for being here this morning.

DR. LUMPKIN: Well, thank you. Certainly an honor to have the opportunity to
address you for one last time.

I guess I just want to start off by noting two significant events that sort
of bookend this committee. As Simon said, this is one of the oldest advisory
committees to the Department and consistently advisory.

When the committee was just started, the Chairman of IBM said, You know, I
think the worldwide market for computers is maybe about five, and at the other
bookend –

MR. SCANLON: 1949.

DR. LUMPKIN: That’s right.

MR. SCANLON: 1949.

MS. GREENBERG: 1949 he said that?

DR. LUMPKIN: Yes, he said that.

SPEAKER: Those were the card-sorter days. (Laughter).

DR. LUMPKIN: Yes. Obviously, he was wrong.

And then sort of bookend with the fact that I think it was yesterday or the
day before the second house in Tennessee passed legislation adopting a law to
have the government in Tennessee develop a regional health information network,
so that, you know, we have really seen a dramatic growth.

I came to the committee in 1996, and, for those of you who were there last
night, that was the days when we were talking about HIPAA. I think we referred
to it as Kennedy-Kassebaum, and we actually talked about it and called it K2,
and the reason why we called it K2 was because K2 is like the second tallest
mountain in the world, and so it wasn’t the highest thing to get over, but it
was pretty darn high, and it was the work of the committee – and Simon, last
night, erroneously gave me credit for the fact that I chaired the Standards and
Security. While that is true, it was Simon, it was Karen Trudel, Jeff came on.
I mean, there was just a whole host of folks, and that is probably an ongoing
theme about the work of this committee. It is actually relatively easy to sit
in the chair that Simon is now moving into, compared to the seats where you’re
at, and particularly in – you know – the people who are heads of the
subcommittees and the work groups, because that is really where all the work of
the committees has been done and continues to be done.

And this committee was recently reviewed – I think it was – was it GAO that
did that or OMB?

MS. GREENBERG: GSA.

DR. LUMPKIN: GSA, and they were looking at efficiencies of various advisory
committees, and this committee came out, if not on the top, pretty close to the
top.

Over 70 percent of the recommendations of this committee have been adopted
by the Department, and that is no small wonder that that happens, partly
because – you know – as we talked yesterday, there is a partnership between
staff on the committee and the members of the committee. It is an opportunity
to come in, and what has really been neat about what we have done as a
committee is that we have aided the Department in developing their mission and
their vision, and it is not antagonistic. It is a collegial partnership
relationship, and so it has really been an honor to have the opportunity to
address it, to first focus in on HIPAA, to change the paradigm and say that –
you know – it is great to enforce it, but let’s – you know, let’s have the
department lead by example, and the Consolidated Health Informatics Initiative,
which we partnered with them and passed the recommendations changed the
environment so that we went from a regulatory environment to push the health
informatics – health information technology world forward to a much more
leadership, and considering the fact that HHS, through its various programs,
provides or covers healthcare insurance for over 100 million people, where HHS
leads and the federal government leads, others will follow.

We are now in a very important time frame. You know, if someone would have
told me three years ago that the President of the United States would be
hitting the stump on health information technology, I would have really asked
whether or not they were – you know – not only smoking, but inhaling –
(laughter) – and we have seen that sort of transformation.

So it is really a point and a pause in time. This committee, through your
work, has made a major difference, and probably when we look back on this time
frame in history, we’ll see the work of this committee as being
transformational, not only for health information technology, but for
healthcare in general and the health of this nation and that this will be a
very important time frame that all of you have participated in.

I want to give special thanks to Jim and to Marjorie and to Mary Jo, also
to Bill Braithwaite and Karen Trudel, who were the staff who I worked with most
directly as I chaired various workgroups and subcommittees, but also to all of
the staff of the Department.

There is a bright future ahead of you. You’ve got a lot of hard work, but
you really should know that working on this committee will make a difference,
not just to you and not just to the industry, but to every single person in
this country.

So thank you for the opportunity of leading you and saying a few words.
(Applause).

DR. COHN: John – and I guess I should – we talked, obviously, last night
and did a lot of celebrating, but I think, as you know, it has been a real joy
and pleasure to work with you these many number of years. For all of you who
don’t know, he and I came on to the committee at the same time back in 1996,
and it has really been a joy to work with you.

Certainly, I think the committee, and really the nation, have really
benefited from your leadership on the committee. So thank you.

Now, with that, we’ll move back to the agenda.

Agenda Item: NCHS Update and Report From Board of
Scientific Counselors

DR. COHN: I think our first agenda item is an update from the NCHS and the
Board of Scientific Counselors. Ed, I think you’re – Sondik, you’re taking the
lead.

DR. SONDIK: Right. I can bring the picture back.

This computer was actually created back in 1950. Think it is so
inappropriate that this committee should have the support –

SPEAKER: Speak into the microphone.

DR. SONDIK: Oh, yes, well, what I am about to say was totally unimportant,
a gratuitous remark about how the committee should be supported by the latest
in technology, rather than something that is two decades – or two generations
maybe – old. In any case, enough of that.

It is a pleasure to be here and to update you on the National Center for
Health Statistics, what has been happening, some of the progress, some of the
challenges, and it has actually been a very eventful year for us –

DR. COHN: Ed, you’re still going to need to get closer to the microphone.

DR. SONDIK: Oh. I hear perfectly well. How is that? Is that better?

DR. COHN: There we go. Thank you.

DR. SONDIK: Okay. Been a very eventful year for us in many ways, both
programmatically and administratively as well, and I’ll go into that a little
bit.

Mr. Chairman, given that the agenda has moved a little bit, would you like
me to compress – Okay. Always difficult for me, but I will do that. (Laughter).

All right. These are some of the things that I want to talk about, and I
will – I’ll give you a set of the handouts from this later.

Let me talk first about this complex diagram, which I am not sure you have
seen before, but this is a view of – at least one view of what the new
reorganized CDC looks like. I could certainly talk an hour about all of this,
so I’ll try to just condense it.

CDC has gone through a major transformation to focus, as it says here on
the top of the slide, on customers, and not only the public-health channels,
but other channels as well – business, education, healthcare delivery, the
federal agencies, really whatever it takes to really make a difference in
health.

In order to do this, it has combined the various centers – not combined
them, but reorganized by putting them in coordinating centers, and you can’t
read all the small print here, but there are several coordinating centers along
this line here, including a coordinating center for infectious diseases, one
for health promotion, one for the environment, and injury, occupation, and then
there is this one that is in gold right in the middle, very prominent, and you
can see that to the right of that is – and there is the National Center for
Health Statistics. It is this center that is meant to provide a much more
effective link to the customer, to the public, to professionals than CDC has
done in the past, and two new centers are being created as part of this, one,
the National Center for Public Health Informatics and the National Center for
Health Marketing.

The National Center for Health Marketing does exist. The one for public
health informatics is about to exist, or, in the parlance of today, is about to
be stood up. I always thought that had to do with a date, but I was – I guess
I’m wrong or dated, in any case, and we are actively searching – in fact, the
searches have closed – for directors for those two new centers.

One of the major reasons for this change is that in the old CDC
organization, there was something approaching 40 people who were direct reports
to the director. This reduces that, but, at the same time, everyone who was a
center director still has direct access to the director.

One thing that doesn’t show on this that I think is important is that these
coordinating centers are actually located within the Office of the Director.
Whereas, the centers that are underneath them are not in the Office of the
Director. This is important for a variety of reasons, but, mainly, it is
important – I think the most important reason is that it empowers the centers.
It continues to emphasize their sort of single-minded importance in the areas
in which they are expert.

NCHS has a very prominent role in this, and, in that role, it continues to
maintain its position as one of the federally-designated statistical units,
like Census, the Bureau of Labor Statistics and so forth.

This is extremely important for the overall plan here, because one of the
elements that doesn’t show in this diagram is that there will be a set of goals
that the program will be aimed to achieve, and NCHS will play a critical role
in monitoring progress toward those goals.

So it is important that we be a – it be in a position of independence, the
kind of independence that the federal statistical agencies have.

There’s some new – also some changes administratively. There’s a new
business services support budget line and a leadership and management support
line, and decision-making structures have changed somewhat, but we really don’t
have time to go into that today, but I would be happy to do that in a later
meeting.

As it turns out that – for a variety of reasons, a number of the CIO
director positions have opened, mainly because of retirements, and there hasn’t
been a recruiting for these nine CIO director positions, not only the Marketing
and Informatics, and for the new coordinating center that we are located in
called the Coordinating Center for Health Information and Service.

I have been serving part time as one of the two acting directors for that
coordinating center. This has been of tremendous benefit to me to understand
the ins and outs of Hartsfield) Airport. (Laughter). Has to be a monument to
design. .

But, actually, it has been terrific in understanding – even though I have
been at NCHS for almost nine years – in understanding better the parent
organization, how it operates, the culture of CDC, and many of the challenges,
and it has really been very positive.

I cochaired a group working on goals a year ago that came up with a first
draft set of goals, and really met more people at CDC than I had met in all the
previous years – distance is difficult – and I think link those goals to
healthy people, which I feel strongly about as a prevention agenda – at least
an agenda that people can draw from.

So I have been spending about half my time there, and people in the center
say they just don’t notice any difference. Marjorie can speak to that.
(Laughter).

MS. GREENBERG: Where have you been going? (Laughter). We miss you.

DR. SONDIK: Thank you, Marjorie, for that. Let’s talk about some of the
major changes. A very significant change for us this year has been in budget.
This is what our budget funding has looked like over the last several years.
While it has gone up, certainly, it has by no means kept pace with what it
takes to run the National Center for Health Statistics, and I have talked to
this group many times in the past about what we have been cutting back. Really
significant cutbacks. We have cut weeks off the National Health Interview
Survey. We have made changes in NHANES, not in the sample size, but other
rather crucial changes, really, that are less obvious, but still are not the
kind of thing we would like to do to maintain quality. We have paid the vital
statistics program, instead of paying on a 12-month basis, we have done
something on the order of an 11-month or a 10-month basis each time bringing
the fiscal year back a little bit. There’s only so far that VISA allows you to
do that, I understand, and we really – we were at a point, until this year,
where, if we did not receive any increase, we were going to have to make a much
more serious set of cuts.

Now, we did get an increase this year, and it amounted to something over
$20 million, really unprecedented for us, but in order to show that to you, I
have to explain just a little bit, that in the new structure for CDC, there is
a new budget structure as well, and the program is being separated from what
amounts to the indirect costs – what I would call the indirect costs of running
the program, and so, in the figure for 2004, instead of being where you see it
here up around $120 million, actually falls back over here to something like
$80 million. This is more of a budget adjustment than anything else. This was
money that was not going directly to program, but was going to support program.

What happened in 2005 was we received this budget increase up to – now, the
figure we are quoting is $109 million as our budget, as opposed to the $40
million more than that which is under the old calculation, if you will, and the
budget for 2006 proposed by the President is to keep us constant. I’ll say a
word about that in a second.

I mentioned many of the things on this slide, but the key points are that
this increase of $19 million net prevents more erosion of what we have been
doing. It allows us to improve our position, but I must say not to the extent
that I would like, but we will do – clearly, we will do the best that we can
with this $19 million, but it is a significant – I can’t emphasize how
significant a change it is to the center in that we will be able to really keep
ourselves afloat.

I thought I had a slide in here on 2006. Maybe it moved a little further,
but 2006 keeps us at a level, but to put that in perspective, CDC’s budget for
2006 actually falls around, I think it is seven percent or so. So we are doing
well with that.

Now, this increase is due to many things, and many people, but it was very
gratifying that the Department was behind us. The Department – I think, through
the work of the Data Council, through the work of this committee, the
Department said this needs to be a priority for HHS, and we were in the – if
you will, the bottom line, a zero level in the budget, and that – for an
increase and that just hasn’t happened before. So we are very grateful for
this.

What this will allow us to do is – I’ll run through this quickly – is to
continue in our work to modernize the vital statistics system. We have been
working on reengineering this. There’s more work that needs to be done, and
more work that needs to be done in terms of a rapid release for data for
decision making.

The Health Interview Survey, this is going to stop us from – what is the
term? – eating away at it, and we are going to be able to restore the sample
size, and that, I think, is just very positive. The Health Interview Survey is
very much at the core of what the Department does in terms of data collection.

For those of you who don’t know, it is a very large survey, 40,000
households, 100,000 people. Many supplements are added to it. It is the model
for the California Health Interview Survey, and nothing would give me more
pleasure than to see the California Health Interview Survey replicated around
the country, so we have a national source as well as local sources and these
things melded together using the same rigor across the board.

We don’t support the California Health Interview Survey, by the way, except
in terms of sharing with them procedures and standards and so forth.

In NHANES, this will allow us to continue to have our full field operations
and provide more opportunity for us to work with our collaborators. We are very
important to NHANES to develop new components for the survey in the future.

It is the same kind of thing for the Health Care Survey. The Health Care
Survey, probably more than any other component of NCHS, has suffered over the
last several years. It was the easiest to modify, because the surveys are
relatively small, and we can simply take them out of the field. I don’t
consider that the most efficient thing to do, but when the money isn’t there,
you’ve got to make choices.

This will allow us to, I think, revitalize this, and a major planning
meeting was recently held by the new director, Jane Sisk(?), and there was
great – really a very positive response to this.

Here is the 2006 budget that I – and I really talked about this, that our
funding would remain level.

We have had a lot of staff changes this year. One, there was a major
emphasis on buyouts, and, actually, we lost a number of staff. I think 30
something, I think it was in NCHS alone, ten times that many, I think, in CDC.
Jack Anderson retired, but not because of that, and Jack was – and still is –
somebody with tremendous knowledge of both the technical side of NCHS as well
as the administrative side, and was, I must say, unflappable and just a
terrific guy, and we will miss him.

The deputy-director position, after some question in CDC as to whether or
not there would be such deputy positions, will be filled, which I am pleased to
say, but, at this point, I can’t say by whom.

We are in the very late stages of recruiting for the associate director for
analysis and epidemiology. This is the group that does many, many things, but
probably is best known as the group that produces the volume, Health U.S., but
does much, much more than that. I mentioned Jane Sisk joined us in the middle
of last year.

I have time for a little bit of this, I think. I certainly want to leave
time, number one, to talk about the BSC and, secondly, to allow questions.

The reengineering of the vital statistics system is really coming along,
and we still don’t have the funds to give the states what they need to
revitalize their programs, but there has been a lot of model development, and
there’s a prototype system that is being developed. The birth side is in pretty
good shape. It is the mortality side of the ledger that is really – suffers.
Someone once said to me – perhaps in this meeting, I’m not sure – said it is
really horse and buggy, and the person said, you can say that literally,
because there are parts of Pennsylvania where, in fact, it is horse and buggy,
and I always refer back to that statement, but it is very – many of you know
that the system for reporting deaths is really kind of archaic, and,
fundamentally, it is an administrative system. Same thing for births, and yet
it really is the foundation for what we know about health status in the
country.

I have had difficulty with this for my entire career, and we have not been
able to make major changes in this, but I hope – perhaps when HIPAA gets less
on the agenda, this is something that we can bring to this committee, because
it really is the foundation for what we know about health in the U.S., and we
can do a better job. It would certainly fit with the NHII, and it fits with the
vision for health statistics for the 21st Century.

In the modeling that has been going on, this is an example of one of these.
This is called the back-office-use-cases diagram, and these have been laid out
for the entire process for vital registration. So these, as it says on the
slide, have been finalized, and they are now on the internet for review and
comment by the vital statistics programs.

There was prototype development. It is underway, but it is on hold at this
point waiting to see if we have the funding to move it forward.

An interesting, very interesting update that you may be familiar with is
that in the recently-passed Intelligence Reform Act, it authorized grant
programs to strengthen state registration and certification for identity
purposes. This, without a doubt, would have a very positive effect. With money,
this would have a very positive effect on the vital statistics system.
(Laughter). I have a meeting this afternoon and we are going to talk about it
without money – (laughter) – but preparing for that moment when, in fact, it is
there.

It is really fascinating. This involves at least six different federal
agencies, as well as, of course, every state, and this could really be the shot
in the arm that we need.

Lots of news this year. Probably one that got most attention was that the
infant-mortality rate rose. Now, it looks as if it is actually going to drop
back from that rise, but we won’t know until we actually see the final data.

Another program underneath the vital-statistics program, which is led by
Charlie Rothwell – the overall vital-statistics program – is the National
Survey on Family Growth, and its 2000 data was recently released and had a
great deal of attention, particularly on the side of contraception use and
sexual activity – teen sexual activity, especially. We changed this survey from
an episodic, if you will, periodic survey to one in which we plan to do this on
a continuous basis. I think it is very important. It is kind of a – it is
related to the vital statistics, but it is also related to everything else that
we do, but it happens to be under vital statistics and is doing very well under
vital statistics.

The great majority of this survey, by the way, is paid for by others and it
does not come directly out of NCHS funds.

This is an example of one of the articles here. Most U.S. teens are
delaying having sex. This was in the Washington Post. Fewer women using birth
control. Again, this happened to be in the Post, but was widely covered.

In NHANES, some of the developments over the past year were – and I’ll
start at the bottom here – We have added new components to the survey developed
over the last year that are now in the field right now. If you are going to be
in Atlanta, by the way, over the next month, NHANES, is set up at Turner
Stadium, and if you are interested in actually touring one of the NHANES sites,
while it is there, I would be happy to arrange that. If you are interested in
general, I would be happy to work with you on where it will be when, but we
have three of these centers – bubble(?) exam centers touring the country on a
very rigorous statistical design, and the information that comes out of that I
don’t think is matched by any other – certainly any other program in the world,
given the number of people that have come to NCHS this year for help on
designing their own work, including Canada and other countries.

So I mentioned – I didn’t mention, but digital images of the retina are
going to be collected, as well as more information on allergies.

We also – I should say the New York City Department of Health and Hygiene
under Tom Freedon(?) completed its own version of NHANES, called Community
NHANES, or they called it NYC NHANES this past year. We worked very closely
with them, but it was their money. Although, we did do some software
development that will be very useful elsewhere, people who want to do a
smaller-scale version of NHANES, and the strategy behind this is to provide a
solid clinical set of measurements – as opposed to self-reported set of
measurements – a solid clinical set of measurements that uses the baseline for
several years and then redo the survey, and with my proselytizing hat on, I
would love to see more people involved, more locales involved in doing this,
not only on a geographic basis, but also on a racial/ethnic basis or some other
demographic basis.

We were talking last night, actually, about Appalachia, for example.
There’s been lots of talk about the Southern border. Okay? There is also the
Mississippi Delta area and just up that – what is the name for that corridor?
Up the Mississippi?

SPEAKER: The Bible –

DR. SONDIK: No. No, it’s the area with a great deal of environmental
problems. I’m blanking on what the term is for that, but there has been a good
deal of interest in doing NHANES there as well.

HIS continues to be, of course, very, very productive. One of the things
that that program is very proud of is the early release estimates that put data
out – that release data that was collected in January through June in December,
and that really is unprecedented, and they have been doing this now actually
for the last – oh – year-and-a-half or so, I guess.

We also conducted a survey with Canada, and really on more of a research
basis, to see if we could conduct exactly the same survey in both countries,
minimizing any kind of bias and see the feasibility of doing surveys across
countries. There’s lots of cross countries comparisons in terms of health
status, but a great deal of it is suspect because of the way questions are
asked, and, actually, WHO has done some very good work under Chris Murray when
he was there in looking at exactly that point, and some of the differences,
particularly across Europe, are really startling, about how you get such
different answers to the same question, and you know there can’t be such a
different health status.

Anyway, this was the survey. It was published this year, and one of the
articles said that there was no winner in the health showdown, but I must have
been politically correct here and took out a slide that said something like the
women – this is from a Canadian paper. Women in U.S. are fatter, it said.
(Laughter). That is what they said. It was a minor, but statistically
significant difference, it turns out. (Laughter).

The positive thing is we found out some very interesting things. One is it
was much easier to conduct the survey in Canada than it was in the U.S. It was
very difficult in the U.S. We used the Canadian call center to do it, managed
by both of us simultaneously, cooperative way, but it was very interesting that
people here are much – as we know, are much more reticent to answer
interviewers, and in Canada, they had a much higher response rate. We had to
work much harder in the U.S. to get that response rate up.

Advances in HCS, the Healthcare Survey, included – well, first of all, a
report on electronic medical records that is going to be released, I think,
early next week. Okay? And showing that it hasn’t had the penetration that one
might hope, and we did a nursing assistance survey under the cooperative
support of ASPE, attached to another one of our surveys, and we have redesigned
our nursing-home survey, which, I think, is really a positive step forward.

I am going to do this slide, and then I’ll turn this over to my colleague.
Okay?

One is this is actually a hard slide in that it is hard to summarize all of
the data and the releases, but I’ll give it a real shot with this.

In vital statistics, the data – the final data from 2002 has been released.
The preliminary data from 2003 has been released. In Health Interview Survey,
the early release figures for 2004 are out. That is the ER figure, and it says
Publications, because we don’t have the detailed data sets on that, but the
data is – summarized data is on the web, and data files for 2003 have been
released. NHANES, all of the data from 2003 to 2004 are going to be released in
just a couple of months, and some of it has already come out.

We don’t release it all at once because we feel that – our feeling is that,
first of all, we can’t process it all at once, and, secondly, we feel that, as
a federal statistical agency, when the data is ready for release it should be
released, and so we do it as promptly as we can, and many of the components of
healthcare from 2003 have been released, and I just mentioned the report on
electronic medical records that will be released shortly.

One other thing, this is an area that Marjorie Greenberg is very heavily
involved in, but is not – her group is not the only group that addresses issues
related to classifications, and it struck me, actually, in communicating with
Marjorie about this that this might be something that, number one, I think
clearly is important to our Board of Scientific Counselors, but also might be
useful to discuss here as well as to the range of activities in NCHS, but not
only in NCHS, but across the department in addressing the classifications which
are so crucial, and we are involved with everything from ICD 9, CM to ICF and
to issues related to disability.

There is more on the slides that we’ll be handing out, but, with that, let
me turn it over to Aldona.

DR. ROBBINS: Okay. Thanks, Ed.

Let me just give you a very quick update on what the Board of Scientific
Counselors is about.

Our last meeting was January 27-28, and, over the last year, I have been
coming here and telling you we are – as a baby organization, we are in an
organizing mode. Well, we finally have got our act together and actually have
started to do some work.

We are going to be assisting NCHS in this internal review of its programs
that I think I spoke about at the last meeting, and this is something that –
within CDC, all the programs are going to be subjected to some sort of an
internal peer review, and the first program that we have decided to look at
that the Board of Scientific Counselors has is vital statistics, which Ed has
said a little bit about, and which presents some special challenges.

As Ed mentioned, underway is a fundamental reengineering of how vital
statistics are produced in the United States. Besides NCHS, they are, of
course, partners with the state and the Social Security Administration that is
involved in implementing the 2003 revised birth and death certificates and
moving to electronic record keeping. These revised certificates are going to be
– are at least designed to collect a great deal more information.

Of course, the big problem that vital statistics and other programs in NCHS
face is money. There is simply not enough money around right now to help the
states reengineer their systems.

In the legal area, there are some law changes that are going to be needed
to facilitate automation. We have to remember that vital statistics is
essentially built on the vital registrar system. It is run by the states, and
that system has its own legal requirements and there can be conflicts between
that and trying to move to automation.

There are also issues likely to arise on the security side because of the
intelligence reform legislation. This is going to require federal regulations
of parts of vital registration for the very first time in history.

And this – you know, what I have tried to bring back to the board is the
work, of course, that this committee is doing, and one of the areas of emphasis
is, of course, this move to electronic record keeping, and this seems to me
that the vital statistics fits in very nicely there, because if we ultimately
do get one – you know – record that each of us is followed for our lifetime,
that essentially the first field in that record will be our birth certificate
and the last will be the death certificate. So there’s an overlap there.

What we are going to be doing – just quickly – is using a set of criteria –
again, starting with vital statistics – but we’ll be following the same thing
with the other NCHS programs in our review, and, basically, we are going to be
looking at the mission, goals and objectives of the program, and trying to see
exactly what is going on within each program, including those activities that
are mandated by legislation. We are going to be taking a look at resources,
particularly budget and staffing, looking at how those are being allocated
within the various components, in this case of vital statistics, and included
in that will be research.

We are going to take a look at measures of productivity, in terms of the
data files that are put out, publications by the staff and other service
activities.

We want to take a look at data usage, identify who is using the data, get
feedback from them, to the extent there are potential users out there that
aren’t using it, why is that, take a look at the most cited publications, and,
also, one of these problems that apparently arises is that NCHS is the source
of so much data, and, yet, when it appears out in the public, it is never
linked to NCHS. Someone else – an intermediary is kind of – becomes identified
with the data, and that is something we would like to look at.

We also want to take a look at the program strengths and weaknesses and
take a look at what problems can be fixed without requiring more staff or
money, and then, of course, which ones can only be fixed with more staff or
money.

And then, also, finally, to take a look at how relevant – the relevance of
the program to any current presidential or congressional priorities, and, of
course, in the case of vital statistics, this would be, among other things,
electronic medical records and the Intelligence Reform Act.

And so I will stop there and will entertain questions.

DR. COHN: Okay. Well, thank you both very much for a very interesting
review.

I do want to apologize, obviously, we are a little time compressed, though
my sense still is is that there’s probably a couple of issues we’ll want to
follow up in either June or September about.

You have time for one or two questions.

Gene.

DR. STEUERLE: Ed or Aldona, I’ll bring up an issue that is quite familiar
to those of us who have advised – I am sure you are quite intensely focused on
this as well at times – but have advised the statistical community within the
federal agencies, particularly in the U.S., because of its system of very
scattered pockets of support, as opposed to, say, like the Canadian system
which is more united, and one of the really big issues is that there is a
tremendous amount of information that is already gathered. Essentially, it is
gathered in the form of administrative data that are already filed, whether it
is tax returns that are filed or – one of the issues that faces the population
subcommittee has to do with sort of how health benefits are distributed across
socioeconomic classes, how will they do merges of Social Security data, which
give lifetime earnings, with Medicare data is a very easy way, if you can do
it, and you can get people in to do it, to solve that problem.

IRS has data on – by professions, you know, salaries and how they change
over time. I mean, we could go on and on in terms of what might be available
through Medicaid or other data.

There is always this dilemma of how do we get access to this administrative
data, because, often, one agency says they can’t provide the data to another
one. Another one, they can accept data, but they can’t provide it, and so the
merges don’t take place, the files don’t get matched, the survey data doesn’t
get matched up with the administrative data, which could really inform it.

I am just curious the extent to which that – you know – your group deals
with this issue or whether it is trying to confront it, the extent to which it
is facing up to what, in some cases, is a legal challenge as much as, in many
cases, more than it is a – you know, lawyers – I’m just curious whether you
might just comment on this whole question about how we can make better use of
administrative data, what steps we have to make to go forward.

DR. SONDIK: Well, certainly, I think, there are great benefits from doing
that. There are also potential costs from doing it. The costs being that it
opens up information and perhaps the things will not be as tight as they should
be.

You know, for example, one of the interesting things is when we – the
Census Bureau conducts the Health Interview Survey for us, as a contractor, in
essence. In doing that, they do not create – we do not use the Census itself,
the detailed information on the Census, to draw the sample. They can’t allow us
to do that under their rules and regulations. Title 13, under which they
operate, forbids them from sharing that information, even with another federal
statistical agency. So there is a duplication of effort here, which, in large
part, is really wasted, and we have actually been working with them on some
ways around that, but it will not be to violate Title 13. We actually have some
thoughts on something else that we can do that we think will be very efficient
for them and for us, for that matter.

But there are times when we can put the data together. We have a research
data center, which is a protected environment, and, in that, we allow
researchers to look at information that would ordinarily be considered as
partially identified, if you will. Information that – it is more detail than we
have out on the public-use files and so forth. This allows us to do much more
with the data – have researchers do much more with the data than they could
otherwise.

We have linked with other files – we have done this with CMS – and it is
conceivable that we can do this, but it is very important that when we do it –
when we work on it – that we do have the lawyers in the room, because there is
the twin sides to this, and there is always the question of, if you will, the
slippery slope. I mean, we have these issues come up just in the data that we
collect in which people feel they would like, for example, a sample of DNA from
NHANES, and they would like to keep that sample and use it in perpetuity. Well,
that would violate what we consider to be our stewardship responsibilities for
that data and the pledge that we made as part of the disclosure agreement with
the respondents. So there is always an issue here.

There is great – there is certainly great potential from this. I think it
is really going to rise to the fore with electronic medical records, and I am
sure – David Brailer was here yesterday. This must have been part of the
conversation, I would think. Well, maybe not yesterday, but it certainly will
be in the future. It is one of the major issues. There is great promise here,
but, also, there is concern about maintaining the confidentiality of these
records.

So the bottom line is we would like to do as much as we can. We are always
very clear that we have the lawyers with us, so that what we are doing meets
the letter of the law, but, at the same time, what we are trying to do is do as
much with them as we can.

I sometimes look at Canada with envy at the system that they have, where
things are more merged together, but even in Canada I think there are issues in
sharing records across one part of stat Canada with another part.

DR. COHN: I think we have time for one more – Steve, comment, and then I’ll
let – Okay. Two more elaborations, and –

DR. STEINDEL: Actually, this is a bit off the present topic, but I just
wanted to make a comment, since both of you stressed on vital-record
statistics.

I am sure most of the people in the room are aware that a number of years
ago an award for health IT excellence, the Nicholas Davies Award, was
instituted, and it was given to institutional systems. A few years ago, HIMSS
took over the award and branched out to ambulatory-care systems, and, this
year, they branched out to public health information systems, and the first set
of awards were given this year, and one of the awardees was the South Dakota
Vital Records System.

DR. COHN: Jim, did you have an elaboration?

MR. SCANLON: Just quickly, to expand on the answer to Gene’s question.
There is actually a fair amount of statistical matching and use of
administrative data, and Medicare has had, for decades, a very enlightened
policy of allowing its records to be used for research purposes under the right
privacy and confidentiality provisions, and there’s a fair amount of matching
between the survey work and some research studies with administrative data, and
subject to the – in Medicare’s case, they are actually a covered entity under
HIPAA. So you have to have a – go through the Privacy Board.

There is less so with IRS, for various reasons. There is less intersector
kind of linking, but there is actually a fair amount in the research arena into
this fiscal arena, and maybe we could set up some future briefings for the
Subcommittee on Populations about where we are.

There is actually fairly extensive use, and there is fairly enlightened
data-access policy for research among some of our administrative agencies.

DR. SONDIK: Well, I think the work with CMS is pretty well known, you know.
I mean, we have been doing this for years, and the NIH – NIH, for example, we
matched the SEAR(?) program, cancer, with Medicare.

MR. SCANLON: Not unusual at all.

DR. SONDIK: Yes, and so – but that is not the challenge, I don’t think.
That takes time to do. The challenge is in the area of where the laws are there
that strictly forbid it, and, you know, then I think you have to balance the
purpose with the laws, and perhaps there are circumstances when you interpret
the laws where something can be done in a particularly protected way, but I’ll
tell you the interesting – I mean, with the Census, it is very interesting and
frustrating that we cannot crack that, and, in a way, I think it is appropriate
that we can’t do that.

DR. COHN: Yes. You know, I want to finish up this conversation. I do
apologize. On the other hand, we actually have spent a fair amount of time, but
what I wanted to do, Ed, is to invite you back, and, depending on your
schedule, either in June or September, to have a slightly longer conversation
or maybe a slightly different conversation with NCHS. I think the issue of
hearing about the vital statistics redesign – You know, I think that we have
talked, now, a number of times about this linkage issue. I can remember
recently we had Census come and talk. Well, actually, maybe it was HHS talking
about Census. I’m not sure who came up from that, but I think we maybe need a
broader view and may just not be a population subcommittee issue, because –
and, once again, I am not a researcher, but I am continually sort of
fascinated, maybe a little frustrated, by the amount of redundant data
collection, as well as the push for more and more redundant data collection,
and so I think maybe a briefing to sort of understand the regulations and rules
and limitations around all of this, as well as maybe the opportunities, because
it is probably, like Gene, hard to believe that there aren’t some more
opportunities there, and I think it would be a very important conversation to
have with NCHS.

DR. SONDIK: Yes, I suggest that you invite Cathy Wallman(?) of OMB to be
part of that discussion. I think it would help.

The last slide I put on the screen is of something that has recently been
added to the MMWR, which is something called Quick Stats from the National
Center for Health Statistics, and we are very pleased about this, because this
means that every week there is going to be something from the files of NCHS
that is presented, and it is presented to a community, many of whom really
don’t use the data to any great degree, even though they depend on it, and that
is the public health community, and I am very pleased that our colleagues in
Atlanta wanted to do this, and we are pleased to cooperate with them.

DR. COHN: Well, congratulations.

And I guess before we finish, I was also going to comment that your comment
about having some information about classifications – then, of course, over to
Marjorie – is, I think, also a good one for either the June or September time
frame.

So, I mean, thank you both very much, and very interesting work and
conversation.

Paul, I think we are moving over to the next topic. Did you have a comment?

DR. TANG: Well, maybe just a quick ask is it conceivable or would it be
destructive to list – kinds of things when you do do these surveys and let them
be shared. That would make it both – you know – truth in lending, from a
disclosure point of view, as well as give us a – is that something that is
likely?

DR. COHN: Is your question about revising the –

DR. TANG: Right.

DR. COHN: Well, I think that is part of the – probably part of the
conversation as we talk about linkages. So we’ll include that in –

DR. SONDIK: I didn’t get the first part, in terms of linking –

DR. TANG: You had your surveys and people were able to opt in to let it
being used for other things, you know, you enumerate what the other uses are.

DR. SONDIK: Oh, I see.

DR. TANG: Would that be –

DR. SONDIK: Informed consent?

DR. TANG: Yes, would that hurt your cause, do you think?

DR. SONDIK: No, it certainly wouldn’t. I mean, as long we stay with the
informed consent. I mean, our major concern – our drive is to get all the
information out. Our concern is that we don’t want to violate the
confidentiality. So it is one of the reasons why we developed the research data
center to do that, and that can be accessed directly or indirectly, using the
internet, but we can certainly make more of a point, I think, and at least
think about what this data potentially could be linked with.

The NSFG is linked with what is called a resource data file, which – I
think it is really terrific. It really gives – it gives information on the
locale in which each of the respondents lives, so that what you know is the
geographic – the demographic characteristics of that, including what is
available – what healthcare is available in there, you know, the usual things
in terms of education levels and income and so forth, but more than that, in
terms of the facilities that people could take advantage of.

So the way it is done it doesn’t violate the confidentiality of the
individual, but it adds a great deal to the data set, extrapolating the
individual into their region, if you will, not giving the specifics, but,
still, that is very, very useful.

Agenda Item: Federal Initiatives in
Geocoding

DR. COHN: Okay. Well, Ed, I think you have done a great segue and
introduction to our next topic, which is federal initiatives in geocoding,
which is very appropriate.

Now, I believe Dan Melnick, you are on first, and, Andrew Dent.

Obviously, thank you both very much for coming and joining us.

Are you going to move over towards the computer? Okay.

MR. SCANLON: While Dan is setting up, I’ll just give a brief intro. Under
the auspices of the Data Council, the Department initiated this project, I
guess almost two years ago, Dan, as part of an initiative to make – to increase
the user-friendly access to the vast statistical and data holdings that we have
and other federal agencies do have; and, as we moved along the initiative, a
government-wide OMB initiative also already came into form dealing with
standardizing the way we code and identify geospacial data, probably started
initially to end with fixed facilities – GPS coordinates and that sort of thing
– but it clearly involves other statistical kinds of information as well, and
Dan has actually done this job with all of our agencies and the Data Council.
In fact, I think, HHS is probably in the lead in this initiative in terms of
organizing this information. So Dan has been working with us as a consultant.

DR. MELNICK: Thank you very much. I also want to mention Jack Moshman, who
is sitting in the room, who is associated with this project.

I am pleased to be here with you today to tell you about some new resources
that we have brought on line and are about to expand and bring on line for you.
They are targeted to help people find the data, and I am going to talk a little
bit about how we did that and what the implications of that are.

First of all, to review things that you already know – so I am going to go
through this very, very quickly – there is a very rich body of information
reported about health and vital statistics, as you know. I have just listed a
few of them here. Needless to say, beyond the federal government, there is also
state and local government resources. There are noon-government resources.
There is a vast scholarly literature, and the Data Council, ASPE and the
agencies agreed that it was important to improve the ways in which people find
this information, so they can use it better.

So the goal of this activity that I talk about is helping the public find
the information, promoting increased and more appropriate access, of course,
doing it in an atmosphere that respects the privacy and data integrity, and,
most importantly, not inventing anything that already exists – in other words,
using existing resources to the extent that they are possible.

I think I just skipped a slide.

DR. COHN: We have copies of it.

DR. MELNICK: What? You’ve got copies of it. I think I missed slide 6.

Here we go. This just lists a whole set of prior efforts at this task, some
of them at a very high level of generality, from our point of view – that is,
from the point of view of health statistics like FEDSTATS, others that
attempted to catalogue the Department’s contributions in this area, like the
Directory of Health and Human Services data resources. There are also a wealth
of private library and other kinds of uses. There is even one commercial
service called the Statistical Universe that offers this type of finding, and
there are a wealth of individual agency efforts, and our job was to try to
produce something for the Department, for the Data Council that took maximum
advantage, where possible, of these existing resources and made it possible for
people to find the material more easily. I am going to talk about how we did
that in a minute.

But, first, let me say that, in the middle of that, while this effort was
ongoing, the Department faced a new requirement from the Federal Geographic
Data Committee. There is an OMB Circular that requires the Department to report
metadata about its statistical resources to this committee.

The committee was formed a number of decades ago. The operation started a
long time ago, but, mainly, originally, it was focused on coordinating the way
in which geography is recorded. It is mainly cartographic, and, of course, the
Department does no cardiographic work that we could find, at least no large
amount of cardiographic work, and I keep getting pulled back.

And, however, what happened was that recently, in the last year or two, the
Federal Geographic Data Committee has begun to branch out, and they now want
reports about geographically-referenced material. Geographically-referenced
material is material that not only emphasizes the location, but also the
characteristics of natural, constructed or governmental features and boundaries
on the earth. That is their definition of what geospacial data is, and when you
get into that, it turns out that by one definition of this, if there’s a table
that reports state or county data about health, that turns out to be geospacial
data, and they would like reports about it.

Well, as a matter of fact, because of the other work that we were doing for
ASPE, we have a solution that can do this without taking a very large
proportion of the budget of the Department. In fact, we were able to do it for
a very small amount.

So the implication of this is that they want information about
geographically-referenced statistical summaries and data sets with geographic
tags.

Of course, I have already said this, DHHS does not map geography, but many
of the reports – in fact, probably a very large proportion of the data systems
– do include information about geographic areas – states, counties and other
areas.

The idea is that the FGDC has formed a clearinghouse. The clearinghouse
includes metadata about these resources. It doesn’t actually include the
resources. It doesn’t actually include any data. It is basically a directory
where geographers go to be taken to other information, and DHHS is required by
the OMB – to provide this metadata.

You know, I must say that there is also something called the Geospacial one
Stop. It is in the material we handed out, and it is designed for a much wider
audience that includes people who aren’t primarily geographers. If you go to
the FGDC site, what you are going to find is finding software that, for
example, will pull up resources by longitude and latitude, which is the way
geographers deal with these resources. The Geospacial one Stop enables you to
do it in a much more direct sort of way.

I recently learned that everything we provide to the FGDC Clearinghouse is
also going to be reflected in the Geospacial one Stop, so that is a
considerable advantage.

So our specifications were – that is, the FGDC part of this – was to
compile metadata for these resources to comply with the rather copious
FGDC-specified standards. There’s actually a several-hundred-page specification
for how to do it, and this involves linking methodological information, the
data itself, data-access information and other kinds of metadata.

Of course, we also wanted to do it in a way that didn’t task the DHHS
agencies, because they have their own rather important agenda, and we want to
take maximum advantage of their expertise.

What we did was to take advantage of something called the Gateway to Data
and Statistics. This is a website that we have created for ASPE. It is driven
by an on-line catalogue. Currently, the on-line catalogue covers approaching
7,00 web resources from federal, state and local governments, including a large
part of the Department’s offering. It is not finished yet. That is to say, we
think it will grow well beyond 7,000, maybe to 10,000 or 12,000 or 14,000, in
order to have completion.

By the way, just to give you an idea about what it took to do this, we
actually reviewed about 10,000 resources. We selected about 7,000 of them, and
then out that approximate 7,000, we have selected about 10 percent of them, or
about 700, which are candidates for inclusion in the FGDC Clearinghouse.

We are at the point now where we have compiled the metadata and the
information about these resources, and we are sending this information out to
agencies to give them an opportunity to see it before we actually send it to
the clearinghouse where the public is going to be able to see it.

One of the key features of this online catalogue, unlike a facility like
Google, where you could go in and search for something – which is also driven
by a database – the two features – one is we don’t actually catalogue all of
the words in every site, but, rather, we tag them so that you can go in and on
this site you could pull up all those that relate to a particular study or
collection, like the NHIS. You can do it by organization or agency. You can do
it by type, and here what we are talking about is what your experience is
likely to be when you reach that website.

For example, if there is a feature on the website that lets you generate
your own tables, there is a way of retrieving it that way. You can retrieve by
geography.

And the last two points on this are things we are currently developing;
that is, ways of retrieving by geography and possibly also including the staff
contacts.

We hope that in the future this facility would enable people who are
looking for data not only to find the data in the form of a report or a table
or a data set, but also to find information about the methodology, the
limitations, the access restrictions and other relevant information that comes
out of this metadata.

So what we have done is, as we have approached the FGDC issue, we also took
advantage of what their requirements were to enrich the Gateway.

In your material, there are web links for the Gateway and for the FGDC. I
would invite you to look at the Gateway and send us comments – there is an
email address given there – because we are in the process of upgrading and
revising and enhancing the gateway and your comments would be particularly
helpful at this time.

So the Gateway provides – and here are the websites. I am not going to read
that to you, obviously.

So the approach that we have used is that one catalogue is providing data
for these three resources. We have conserved scare resources. This is basically
our ad. We have also protected privacy and data integrity.

First of all, we have done this because we – all we are providing is a
catalogue. We don’t actually have control over the real data itself. We are
just sending people to the agency, and, in the case of the Gateway, even
state-government resources, where they can find the information. So the
originators of the information still have complete control over it. We haven’t
actually data-banked it or anything like that.

The purpose is to get the user to the right website where they can find
this information and where they can also find metadata.

Well, the time is very short, so I am going to quickly go through some of
this.

The next slide, which you have a copy of, provides the rationale for the
Gateway. It involves virtually integrating DHHS statistical resources, covering
the broad panoply of agencies, without actually having to obtain that data, and
put it together in one computer or one place, and it is driven by an SQL
database that we designed. It covers reports, tables, data sets. It links – and
we have already done some of this.

Okay. The important thing about the Gateway, though, is that it does cover
federal, state and local government resources related to Health and Human
Services, and I have gone through some of that, but what I didn’t do was –
Excuse me. I keep skipping. Okay. We have already discussed that one and that
one.

Finally, I am here to ask you, among other things, to encourage people you
know, and for you yourself to use the resources that are noted here. We would
like to get the word out that this new resource exists, and we would appreciate
your using it, your sending us feedback and your recommending it to others.

We are particularly interested in your suggestions for ways in which it can
be improved, and here are the contacts.

Okay. I did that in just a few minutes, to get you back on time. I would be
very happy to answer any questions. I would be also happy if there are people
who have comments or suggestions that we don’t have time for here to honor and
respond to emails that you send me, and I would strongly invite you to go and
look at the Gateway and send us your reactions to it.

DR. COHN: Okay. Well, Dan, thank you for helping us move through, but it
sounds to me like we should look at – the key message is here look at the
website and email your comments.

DR. MELNICK: That is the key message, yes.

DR. COHN: Okay. Great. Well, thank you, and, obviously, we’ll be talking
about it more, but I want to let Andrew give his presentation, and then we’ll
just talk about it.

MR. DENT: Hi. My name is Andrew Dent.

I am not going to use the computer here. I don’t think my – Let’s see here.
I thought they said it was going to be loaded. You all have handouts, is that
correct?

DR. COHN: We all have the handout.

DR. MELNICK: While we are waiting, if anybody has a question they want to
ask, I would be happy to respond.

MR. SCANLON: And you might just mention, the HHS Statistics Gateway, Stat
Net, I think we include not just HHS, but other federal-agency statistics –

DR. MELNICK: That is right.

MR. SCANLON: – if they relate to Health and Human Services. I don’t know
that we have IRS data or things like that, but there is income data, wealth
data and so on that relates back to –

DR. MELNICK: Right. There’s links to information from the Census Bureau,
even from the Bureau of Transportation statistics, where they have accident
data. The goal is to integrate information from any federal, state or local
agency that we can identify that has information that is relevant to the
subject matter of the department, and I think our penetration for federal
agencies for the Department is a lot better than for the other federal
agencies, which is a lot better than for state and local, but we are continuing
to look for such resources, and we do have links to – at least to the main
sites of every state health department, for example, that has statistics, et
cetera.

DR. COHN: Yes. Okay. Andrew, I am going to suggest you go forward. It looks
like we are having technical – and I think we all have copies of this stuff, so
I think –

MR. DENT: Okay. I just want to thank everyone for having me here today. My
name is Andrew Dent. I work with the Geographic Research, Analysis and Services
Program within NCEH-ATSDR.

So, today, I have basically got two broad purposes. The first one is to
introduce my group to you all and let you know what we do and how we fit into
the agency, and the second one is to outline sort of in broad strokes how
geocoding works, and then provide you some vignettes on how geocoding has been
applied at the CDC in programs that I am familiar with. So –

DR. COHN: Andrew, I am going to just stop for a second. I would actually
like the staff to let you talk and – I think that you are doing a great job,
and I think we do have copies of this, so I think we are fine.

Michelle. Michelle, I would prefer him just to talk. Thank you.

MR. DENT: So, as I mentioned, I am with NCEH-ATSDR. My group provides GIS
analytical support for all the centers. So our group includes about 25 to 30
people. We have scientists. We have social scientists. We have geographers,
cartographers, medical personnel as well, and we partner with many centers to
do work – cartographic production, geocoding, building of systems, analysis of
data, enabling data that has been captured in the field, those sorts of things.
So that is our group.

So if you ever have any questions about how GIS can be applied maybe within
an area that you are familiar with, just let me know and I would be happy to
connect you with our resources.

Of course, GIS in public health, we typically look at the roles that GIS
can play in such an endeavor. One would be to characterize populations. Another
would be to visualize patterns. It can be very powerful in pattern
visualization.

We use GIS to analyze population, health outcome and environmental data.

We also integrate disparate data sets on a single platform. So that is
layering data together, looking at how features in one layer relate to features
in another layer. That is key to what GIS can provide public health.

And, also a very powerful use of GIS’s communication, how do you
communicate sophisticated results to maybe a community or to a group of
individuals who aren’t familiar with the data that you are describing. Often, a
map can be a really good way to do that.

Our program, the Geographic Research, Analysis and Services Program, was
actually begun in 1988 through a joint program with EPA and DOE. We have a
longstanding role in providing mapping and special analysis support for both
ATSDR and the CDC.

Typically, in the beginning, our activities focused on site-specific work,
hazardous-waste sites, what people were near those sites, how could they have
been effected or exposed.

Now, we have been branching into different sorts of surveillance, research
activities that actually partner with different centers at the CDC.

Okay. What is geocoding all about? It is the process of developing
coordinate information – such as latitude/longitude – based on
geographically-referenced data.

The key is geocoding can be accomplished using many different mechanisms,
but it always involves linking this geographically-referenced data to a known
position on the surface of the earth.

As Dan mentioned before, geographically-referenced data is data that
contains an identifier that can be linked back to a place on earth, and I am
going to elaborate on that a little bit further.

We are on the geocoding to a street center line slide. I am going to go
through three main ways to geocode.

The first one that you are probably most familiar with is geocoding to a
street center line. That is the process where you take an address, match it to
a road segment and use that road segment to derive a location for that address.

For instance, in this example, we have 100 Oak Street. We want to know
where that is. We match that to a nationwide network of road-segment data, find
the segment that matches and use linear interpolation to place the point along
the line. So that is probably one that you are very familiar with in different
studies and research that you do.

Also, though, geocoding to a point is just as valid. The example I have
here is geocoding to a mile marker. For instance, many state DOTs can provide
you files with mile-marker locations. If you have data, for instance, accidents
or hazardous releases that have occurred, you know, on an interstate system
that has mile-mark information, you can match that back to your point
information to drive the latitude and longitude for that event that you are
evaluating.

The example I have here is a project that we are currently working on. It
is an analysis of border-crossing deaths along the U.S.-Mexico border.

The information came in referencing mile markers. So we obtained
mile-marker point locations and joined that data back to the mile markers that
we had.

Can everybody hear me okay?

I also want to emphasize the fact that geocoding to areal units is a very
important way that we can attach latitude/longitude coordinates to data.

In the example I give here, we are matching records to centroids of
polygons, and we are then storing the coordinates of the centroids and
attaching those to the record that we are interested in working with.

In the handout, I have a slide that illustrates one project where we
actually have applied those, and that is the Metro Atlanta Birth Defects
Project. It is part of the Environmental Health Tracking Network Initiative,
and we are using – instead of using a road network to locate the positions of
births in the City of Atlanta, we are using parcel data that we have actually
acquired from local GIS departments in the city. So they have gone to great
pains to have an address attached to each parcel, because they need their
taxes, so they have gone to great pains to do that, and we are leveraging that.
We are taking our records that we want to spatially locate, joining those to
parcels and getting a really good estimation of where these people are, where
these individuals are.

And the overall goal of this project is to link air-quality data to
birth-defect health-outcome data, so we have to be as specific as we can about
the locations of the mothers, and this is the best way to do it, not linking to
road segments, but linking to parcels.

Okay. I am on the geocoding and surveillance systems slide.

Of course, everyone is familiar with a variety of surveillance systems at
the CDC, for mortality/natality statistics to the BRFSS.

Geocoding this data enables researchers to analyze the relationship that
this data has to other features or other factors that exist in an area.

One of the things that I like about applying GIS techniques to existing
surveillance databases is that the surveillance initiative is typically an
ongoing, established thing. We are just overlying GIS on top of that. GIS is a
partner with the surveillance system. GIS doesn’t have to be the whole system.
It is a helper. It helps physically locate features that are already being
accumulated by programs at the CDC.

One example that I wanted to provide for you of a surveillance system that
actually we have linked into an online real-time geocoder is the Hazardous
Substance Emergency Event Surveillance System, and that is out of ATSDR.

The mission of this system, called HSEES, is to capture and visualize data
pertaining to the release of hazardous contaminants in the environment. So,
typically, these are emergency releases. These are accidents, train wrecks,
truck wrecks, those sorts of things, that cause a release of some sort of
contaminant into the environment.

Officials in 18 states currently are plugged into HSEES. So in the health
department in 18 states, records are being generated that eventually end up in
the HSEES system.

The key thing that I want to point out here to you is this slide that says,
“HSEES Inline Geocoding.” As records are submitted from the states,
those states immediately go to a geocoder that we run for HSEES and we provide
them a latitude/longitude that goes right back in their database. So as the
information is generated, it is already being geocoded, which can be a powerful
thing, because maps can be made available immediately.

Another powerful thing that isn’t geocoding, but it is a way to leverage
GIS data within the HSEES system is a couple of services that we provide that
actually will determine the number of features within a certain buffer of an
event as that event is being input to the system. So, for instance, if I am a
health official in Georgia, we have a train wreck and I am entering in the
information about the train wreck, where it occurred, what substances were
released, who responded, all those things, when that record comes to the CDC,
it is immediately geocoded with a latitude/longitude, and, also, it is attached
to other information that we derived geographically, meaning we determine the
number of hospitals in a mile buffer around this location. We determine the
number of people in this area. We determine the number of senior-care
facilities and daycare facilities and schools within a certain predetermined
buffer of this accident. So, as data is coming in, we are applying geocoding.

We are also applying the use of GIS information to generate data that helps
the decision makers who have to respond to this event or later on evaluate how
the event was responded to.

So that is what – we really want to emphasize the fact that GIS doesn’t
have to stand alone. GIS can be partnered in with other systems, can be
overlaid into other systems to make those systems a little bit more rich in
terms of the spacial information they are capturing.

Dan mentioned HIPAA earlier, and I just wanted to touch on that. An address
or latitude/longitude is, in fact, an identifiable piece of information. So
that puts it – you know – HIPAA will govern those identifiable pieces of
information.

How do we, in terms of using GIS data, conform to this set of standards? On
the back page, I have a simple set of items that we usually look to to help us
comply with any sort of HIPAA-related project.

When we are geocoding, if a researcher, say, from birth defect says, I
really need this data geocoded, we ask them to strip out everything except for
the address and a unique identifier. Then we can handle it and geocode it and
then ship it back to them and they can integrate it back in with their existing
data set. So that way, they feel good about giving us data that we can geocode,
because we don’t know what the data is about. We don’t know what those cases or
records are.

Another thing to look out for is when you are mapping, you don’t want to
place a point right on top of an address, because that could basically be
reverse engineered to determine, potentially, the person’s identity. So we –
occasionally, we’ll randomize point locations, and, at other times, we will
actually just aggregate these points to areal units like a Zip Code, Census
units, block groups, tracts, et cetera.

So those are things that we sort of have in the tool box to deal with some
of the compliance provisions that HIPAA has.

And just to close, I just want to, once more, emphasize that geocoding is
not just geocoding to your road network, but it is geocoding to areal features.
It is geocoding to point features that you have available, and, also, it is
very important to look at the ways that GIS data and GIS processes can be
leveraged in existing surveillance efforts that we have, existing
data-gathering efforts that we have here across all the centers at the CDC.

And I would be happy to answer any questions at this time.

DR. COHN: Dan and Andrew, thank you both for very interesting
presentations, and, actually, it is sort of refreshing not seeing Power Point
up on the screen here from time to time. (Laughter). So thank you. I think you
did a great job going through the slides.

I actually want to start, myself, with one or two questions, just to make
sure I understand. Obviously, I was trying for a while to figure out how Dan’s
work relates to, Andrew, your work, and I guess I am wondering – I mean, I can
imagine either it has no relationship or it is very tightly linked, and sort of
going along with what Gene was asking about linkages, does Dan’s work provide
augmented linkages for your work in terms of your databases or –

DR. MELNICK: I think the way to think about it is that Andy has described
one application of GIS to an analysis system that is happening at CDC, and we
wanted you to hear that, so you could see a real live example of how this is
used and what it is used for.

What we have been working on is at the metadata level, helping people find
Andy. (Laughter). I think that is basically what it is.

One way to think about this – and, now, I am going to reflect the fact that
I did work for about 15 years as a – what I call – the way I describe it is as
a very privileged researcher in the Library of Congress. The way to think about
this is that Andy’s got the books and we’ve got the card catalogue.

DR. COHN: Okay. Okay. Thank you for that clarification.

I have one more question and then I’ll open it up to others, and I just
can’t help myself on this one, but there are three different ways you have
talked about geocoding. The question is do they map together?

MR. DENT: Do they map together? Yes. Each time you geocode, you derive
coordinates for whatever event you are geocoding. Typically, those would be a
latitude/longitude position. So if you are mapping an address – matching an
address to a street center-line network, that address would be basically a
latitude/longitude attached to that, and the same so for other features.

If you have a highway-death database and you want to know where these
positions are, and all you know are mile markers, you would be able to match
that to a mile-marker database, and, then, each location of accident would have
a latitude/longitude.

DR. COHN: Thank you.

Other questions? Kevin and then –

DR. VIGILANTE: Yes, I just have a very straightforward question. It sound
as if you – what you provide is a service, it sounds like, to – is it to
departments of public health at the state level or – I mean, who gets to use
your service and who doesn’t? I mean, I suppose if I sent you something
tomorrow, you probably couldn’t geocode it for me.

MR. DENT: That is a great question. We have – as you know, ATSDR has state
partners, and we do work for those state partners. We do work for all parts of
the CDC, but, occasionally, there has to be a little negotiation, you know,
when a project is initiated. Maybe we wouldn’t have enough resources and we
would have to request additional resources from maybe your agency to help us
complete a task.

DR. VIGILANTE: But it would have to be a public – In other words, you said
a researcher, so somebody at some academic institution couldn’t leverage your –
so it would have to be a federal or state agency.

MR. DENT: Well, it would depend on the project. We have done work for
non-governmental organizations. The Migrant Clinicians Network, we have done
work for them, and it does – those non-governmental projects, maybe an academic
institution, those are sort of taken on a one-by-one basis, but I have a
director who really wants to be involved with the different facets of public
health, and she is very open to working with people, say at Emory in the Public
Health Department or State of Georgia Public Health or across the nation in
state health departments.

DR. STEINWACHS: I was just wondering if you do any things that get you
involved internationally. You know, for an example, many Americans originally
were born in other parts of the world, and so are you dealing with databases
that might actually look at characteristics linked to people or other things
around the world or is this only – U.S. is pretty much what you are –

MR. DENT: Well, for the U.S., we have a wide array of data available.
Around the world, we have a smaller amount of data available, but we are trying
to provide support in those areas.

We work in the Director’s Emergency Operations Center at the CDC. In fact,
we staff it basically eight hours a day, five days a week, and 24/7 in
emergencies, but for the SARS response in 2003, we did mapping of locations
around the world to help the researchers who were involved in responding to
that deal with what data they had and what was happening. Some of the flu stuff
we have done international maps for.

The only problem is we don’t have the rich socioeconomic data available for
other countries that we do here in the States with the Census.

DR. TANG: I think this is really very, very exciting information and
application, and I just have a question on your last slides about HIPAA
compliance, because I am not sure I understand what – I appreciate your
sensitivity to it and the randomizing of the point location, so on and so
forth, but why would it have any special need for concern? So if you are
involved in a research project, it seems like it would be covered under the IRB
approval. If you are involved in public health, it would be covered by
exclusion. Is there any special sensitivity that – why you raised that
question?

MR. DENT: I raised it because, occasionally, we do work and our
organization does not come under the IRB umbrella, and people have already
dealt with the IRB situation within their group, but when they have to ask us
to assist them, we have to provide them assurances that what we are doing is
not going to violate anything.

But, right, if we were under – for a particular project, if we are under
that IRB umbrella, then some of these would really not matter as much. Right.

DR. LENGERICH: Very good. Andy, I was wondering if you can – if you have
examples of an analyses that you have done that have been more associated with
the healthcare system or outcomes of health. I guess I am particularly
interested in disparities between populations, access to healthcare and
addressing that sort of through this GIS GO coding system, because I think – it
seems like it is a very powerful tool in that sense as well, and so I am
wondering if you have experienced or if that is part of what you would do then
for other parts of CDC or other individuals or organizations.

MR. DENT: It most definitely is part of what we would do. I can’t think of
a good example, off the top of my head, where we have analyzed that, but if you
mean taking a look at the locations of health clinics, identifying how far they
are to populations of need, identifying if they are being leveraged by the
people who are most nearby and those sorts of things, yes, exactly. That is
what we could provide somebody who is interested in studying that.

DR. LENGERICH: Well, and I would guess – I was also thinking about the
quality group, and the quality of the care that might be provided or the – at
that particular clinic or set of characteristics of a set of clinics. Seems
like that could be useful information to link to particular outcomes – health
outcomes.

MR. DENT: Right. Right. Yes.

DR. LENGERICH: In driving health policy and healthcare intervention
efforts.

MR. DENT: Exactly right. It would all – what you are talking about is
spacial – how close were the people to the clinics that they –

DR. LENGERICH: And the characteristics of the clinic or the populations of
the clinic being seen.

MR. DENT: Right. What was their result after they attended that clinic or
were seen at that clinic. We would definitely be able to assist in a project
like that. Of course, we would have to have the data that you are describing to
fully work through that. What were the health results? Who was seen? What was
the specialty of the clinic? All those sorts of things, but, yes, that is
something that we have some projects beginning in.

DR. VIGILANTE: Just one more, and I hesitate to ask this because it seems
almost foolish, but are there any ways you can use this methodology to address
issues that are relevant to homeless populations? Are there any creative ways
that you can actually locate people who don’t have homes or addresses?

MR. DENT: I have never worked on that before. I imagine maybe you could
possibly obtain some shelter data that would help you arrive at some numbers of
the homeless population in certain areas, but that is a good one. It would be
shelter data, maybe.

MR. SCANLON: There are other statistical techniques to actually – not
geocoding, but there are actually others to sample and estimate.

DR. MELNICK: I think that is a very good example of where the work that we
are doing is helpful, because what we are trying to do is to cover resources
that you wouldn’t ordinarily think of as public-health resources. For example,
that kind of information is going to come out of HUD, which has conducted
surveys of the homeless population, and what we are attempting to do in the
work that we are doing is to tie together the work of the department with the
work of other agencies that might have collected information like that. So,
yes, I don’t know off the top of my head whether we actually succeeded in
covering homeless populations in some of the resources that we have covered,
but, indeed, it is part of our goal to cover things like that.

DR. COHN: Well now have our last question, actually, from our retiring
chair, please, John.

DR. LUMPKIN: And I am just a little bit curious, because, obviously, the
power of this tool, particularly in monitoring outbreaks or looking at spread
of disease, is really quite powerful.

Having used this in looking – a few years back, when we were looking at
patterns related to outbreaks of emerging infections, it seems to me that a
human being looking at a map takes away a different impression than just a
bunch of dots, and how have you looked at the process of automating ability of
doing analysis of geocoded data that identifies patterns that can be done so
that – well, for two reasons. One is to confirm a pattern which may be
apparent, but not real, and, second, is to identify patterns that the human eye
might miss?

MR. DENT: Right. You are exactly right. You look at a map, you get a
general impression.

Our director is a doctor, and she has been involved with some cluster
investigations. So she has been involved with using the spacial stand(?)
statistic to arrive at some of these different estimations of clustering. So,
yes, it can be applied. Does that answer your question? Okay.

DR. COHN: Well, I want to thank you both for, I think, what has been a
fascinating conversation. Obviously, I think we’re all – you talk about
linkages and all that, the question is is this yet another tool in terms of
doing it in a reasonable fashion that obviously doesn’t violate privacy or
confidentiality concerns. So I want to thank you both very much.

Now, what I am going to do is to give everybody a five-minute stretch break
here in just a second, but I did want to sort of comment that our retiring
chair let me know last night that he is leaving at 12 noon. So I just want to
take this final occasion to – (laughter) – thank him for his service, for his
eight years on the committee – Hear. Hear. (Applause) – as well as the six
years he has been a superb chair. So thank you, John.

As Marjorie and others have commented, we don’t let people go very easily,
and we have, obviously, already asked him to be an ongoing consultant to the
Executive Committee. So we thank you for your ongoing hope, wisdom and
guidance. So, John, thank you.

Okay. With that, let’s take a five-minute break.

(Break)

DR. COHN: Okay. What we are going to do is obviously start with the reports
from the subcommittees and workgroups.

DR. COHN: We are going to change the ordering a little bit, with the action
items going first, and we have actually asked Mark to start with the report
from the Subcommittee on Privacy and Confidentiality, and the letter that we
heard yesterday. Please.

Agenda Item: Subcommittee on Privacy and
Confidentiality – Action Item

MR. ROTHSTEIN: Thank you, Simon.

Our report is in two parts.

First, I want to recognize John Houston, who will go through the revisions
of the letter that we presented yesterday on – medical devices.

MR. HOUSTON: Based upon the feedback that we got yesterday, as well as the
feedback from the Privacy Subcommittee meeting this morning, I have modified
the letter, which everybody should have copies of in front of them. It is
red-lined copy, so the language, again, should be readily apparent.

What I’ll do is go over what I think are the most substantive changes and
why they are made.

In the first paragraph, in response to Justine Carr’s suggestion, we added
a sentence describing why we actually did the hearings on medical equipment,
and the sentence reads, “Because much medical equipment in use today
either stores protected health information or can actually network with other
systems that store PHI, such medical equipment needs to comply with the
security rule. Therefore, NCVHS held hearings to gather information about the
effect of the security rule on medical devices.”

The next change was in numbered paragraph 2. In that case, we added some
clarification, primarily to the last sentence, which reads, “Further, some
customers update medical equipment with the latest software updates from
third-party software and operating-system suppliers without first verifying
whether the update effects the safe operation of the medical device for its
intended purpose.”

The next change is a paragraph – the second paragraph on the second page,
and I’ll read it in its entirety, and it relates to the FDA, and it reads,
“Another witness representing the FDA stated that the FDA’s primary focus
has historically been the safe and effective use of medical devices, and,
therefore, the FDA has not evaluated security in approving the use of a medical
device. The witness further indicated that it is the responsibility of the
medical-device manufacturers to design their devices to enable covered entities
to comply with the security rule.”

We added this sentence, “Subsequent to the hearings, the FDA issued a
guidance document entitled, Guidance for Industry Cybersecurity for Networked
Medical Devices Containing Off-the-Shelf OATS(?) Software,” and then I
provided a link to the actual guidance document.

The next change, then, related to the recommendations. The primary change
is the actual first bullet point of the recommendations where I’ll read it in
its entirety, which says, “HHS should provide guidance to covered entities
to assist them to bring medical equipment into compliance with the security
role and to otherwise take appropriate steps to make medical equipment secure;
e.g., protection from viruses that may impact the proper functioning of the
medical equipment.”

That was to address Paul Tang’s comment yesterday.

Then the other major change to the recommendation was simply the reordering
of Recommendations 3 and 4. I put them in opposite order.

Otherwise, as you can see, there’s just minor changes to the document to
make it a little bit more clear.

DR. COHN: Okay. I think you have done, actually, a good job cleaning this
up and improving the letter, so thank you.

People have questions? Kevin.

DR. VIGILANTE: I don’t know if this is – how strongly people feel about
this, but I think one of the points that Paul was making yesterday was that
there actually – comes in the first modification that you made. There are
actually two reasons to be concerned about this. One is that – is the PHI
reason. The second reason is is that these devices can actually be taken down
by a virus and caused to – so it’s not – there is a PHI issue and there is a
functioning issue, which actually represents a danger to patient care.

MR. HOUSTON: Right. Safe use, and I think we tried to address that on the
first page. I know it is not –

DR. VIGILANTE: Well, what I would – just from an organizational point of
view – if you are saying because such medical history – I mean, I think there
are two reasons why – I think that paragraph saying why this is important,
there’s probably two reasons. It’s because it is a source of personal-health
information, and, second, because it becomes vulnerable to attack or
malfunction and may jeopardize patient care, if the functioning is compromised.

Now, the question is is the intent of this letter to be limited to HIPAA
concerns? Because the HIPAA concerns revolve around – more around PHI than
safety concerns.

MR. HOUSTON: Well, we thought it was broader than that. We did decide that,
I think, that these were important things to add, though. I mean, obviously,
our primary concern related to HIPAA compliance, but I don’t think you can
necessarily do that in a vacuum, and it was – at least, I think the way we –

DR. VIGILANTE: So if you are going to do that, then I would say, you know,
with regard to HIPAA, this is the concern. However, there are other reasons to
be concerned about device security, such as patient safety and the possibility
that these devices may malfunction if not secure in that fashion.

MR. HOUSTON: Well, we do talk about – I mean, I understand your point, but
we – not to be defensive, I think we do try to talk about –

DR. VIGILANTE: You do it towards the end. Just from a – really an argument
construction point of view, I probably – that is the first point I would
probably mention.

MR. ROTHSTEIN: So, in other words, let me see if I understand what you are
saying. We add a sentence between the one that begins, because, and the one
that begins, therefore, that would say something like, In addition –

DR. VIGILANTE: Yes, exactly.

MR. HOUSTON: I can craft something.

DR. COHN: Yes, I think that this is – I mean, I – think we’ve got the idea,
and I would imagine that this would be something that if we passed it, we pass
it with further wordsmithing of the Executive Committee or just further
wordsmithing period.

MR. BLAIR: I would like to move that the letter be accepted with this
additional sentence being added.

MR. REYNOLDS: Second.

DR. COHN: Any discussion? Other comments?

All in favor –

(A chorus of ayes).

DR. COHN: Opposed? Abstentions?

Okay. Well, John Paul, hopefully, we’ll get a revised version –

MR. HOUSTON: Yes, what I’ll do is – do you want me to send it – I would
rather go through Mark –

DR. COHN: That would be fine.

MR. HOUSTON: But if I give it to Mark or email it to Mark, he can forward
it as appropriate.

DR. COHN: Okay. Mark, do you want to provide

other updates on the subcommittee?

MR. ROTHSTEIN: Yes. Thank you, Simon.

The Privacy and Confidentiality Subcommittee met this morning, and I just
want to update you on our plans over the next several months.

As previously indicated, our second hearing on NHIN, this time focusing on
provider perspectives, will be held March 30 and 31st in Chicago.

Hearing number three on NHIN, which will focus on health-plan experience
with electronic health records and IT perspectives on possibilities for new
types of systems will be held on June 7th and 8th in
Washington.

Our tentative plan is to have a proposed letter drafted in time for the
September meeting of the full committee.

We also discussed our fall hearing schedule, and there are three areas that
we have identified as being our top priorities.

First, under HIPAA concerns, we want to take a look at the use of notices
and acknowledgments and whether they are working, and, if not, why not, and
what can be done about it.

The second is to deal with requests by patients to correct their medical
records, and to see how that is proceeding or not proceeding, and possible
recommendations on that.

And third is an oldie, but a favorite for discussion, and that is
accounting for disclosure. This will be the – at least the eighth time that –
(laughter) – we have looked at this issue, but we’ll have more data, as time as
gone by.

The second area in which we are interested in pursuing hearings is on the
issue of accurately linking patients to their information, formerly known as
individual identification and this would be a joint hearing with the
Subcommittee on Standards and Security.

And, then, finally, personal health records and privacy issues, another
topic for joint hearings with the Subcommittee on Standards and Security.

So we will be quite busy through the end of the year.

DR. COHN: Yes, you will.

Any questions for Mark?

Thank you. Sounds like a very aggressive agenda. You’ll probably want to
think about, now that we have new members on board, starting to poll people for
meeting dates for the last half of the year.

Agenda Item: Subcommittee on Standards and
Security, Action Items

DR. COHN: Okay. Well, with that, let’s move on to the other action item,
which is the Subcommittee on Standards and Security, and the letter. Harry, do
you want to –

MR. REYNOLDS: Yes, be happy to.

You have a copy of the letter in front of you as a group.

I’ll quickly just point out the changes, and only spend a moment on the
ones that are of any significance.

If you turn to page 5, the first change is pretty much spelling out public
key infrastructure.

On page 6, at the bottom, we just deleted a word.

Page 8, we just spelled out the electronic labeling system is ready and
then estimates that the full – and then continued that sentence on the top,
pretty much what we agreed to. Well, it is exactly what we agreed to yesterday
as a group.

Would like to have you focus on page 9, on Recommendation 7.2. We have had
a friendly amendment. If you will look at the projection screen, we have had a
friendly amendment to the letter. So I would like you to read the paragraph, so
you can see how it flows. I’ll – “HHS should take immediate steps to
accelerate the promulgation and implementation of FDA’s drug-listing rule in
order to make the inclusion of RxNorm in the 2000 tests as comprehensive as
possible.”

The change is to add, “Delayed promulgation may imperial the success
of the 2006 pilots,” and then, further, “This is also necessary to
achieve the patient safety objectives of MMA.”

The floor is open for comment.

SPEAKER: “Imperil” sounds like, you know, you are endangering
life and limb. That seems like a very strong word, but –

SPEAKER: Jeopardizes.

MR. REYNOLDS: “Jeopardizes” is the recommendation on the floor.

DR. COHN: People comfortable with “jeopardize”? Okay. That is
probably a little –

MR. BLAIR: Are you suggesting a change in the word there?

DR. COHN: Yes, from “imperil” to “jeopardize.” Okay,
Jeff?

MR. BLAIR: Yes.

DR. COHN: I think we kind of looked around at each other, looked like it
was another friendly amendment. So –

MR. REYNOLDS: And that would be the appropriate process.

Okay. Going to page 10, just eliminated – deleted a couple of words there.

And, then, there were some mentions, and if we go – I’m sorry. We inserted
– on page 10, we inserted Patient Safety. That’s right. There was a discussion
that we should make sure we pointed out patient safety there.

Next, if you go back to D, which is a list of acronyms, there were a number
of questions about glossaries of terms, and there were some things pointed out.
So if you go back to page 18, we expanded Daily Med, Drug Knowledge Base.

Then on page 19, RxNorm and SCRIPT, we adjusted those also.

And then on page 20, the Structured Product Label, we expanded those
definitions, too.

So that would be the extent of our changes, based on our discussion
yesterday, and the only change you had not seen was the one we just adjudicated
a moment ago.

DR. COHN: Questions? Comments? Sounds good. We would entertain a motion.

MS. BEREK: I think we should make Harry read it again. (Laughter).

SPEAKER: The whole thing. That may imperil his health.

DR. COHN: I think Judy is already feeling nostalgic.

MR. REYNOLDS: It’ll be coming out on – Check the Home Shopping Network.
It’ll be out on CD later on. MR. BLAIR: And it is my job to move that we accept
this letter with that additional modification suggested by John, which –

DR. COHN: Okay. Discussion? All in favor.

(A chorus of ayes).

DR. COHN: Opposed? Abstentions?

Okay. It passes. Thank you.

MR. REYNOLDS: Do you want me to discuss what else we did in committee?

DR. COHN: Yes, please.

MR. REYNOLDS: Well, first, we all sat there waiting for Simon to be the
chair again, and he wasn’t. So we kind of grouped up.

DR. COHN: Got over that, huh?

MR. REYNOLDS: During the remaining time on the breakout session we came up
with a few things.

We pretty much focused on a list of the things that we know that we have to
keep an eye on, and I’ll just give you the categories.

HIPAA, obviously, continual followup on e-prescribing.

In alignment with Mark, as he mentioned, on the privacy, the linking
patients to their information is going to be a key consideration, especially as
you move into electronic e-prescribing, you move on to electronic medical
records and everything else, the patient has to be the patient has to be the
patient. So we need to figure out how to do that.

The Federal Health Architecture, you heard David Brailer talk about that
yesterday. That is obviously a subject that we are going to need to put –

And then the SDOs and how they work together, because as more and more of
these standards come out, I think we saw a wonderful working relationship in
e-prescribing when we heard us talk about HL7, NCPDP and the industry all
working together and really turning some things around pretty quickly. So we
want to work with that.

Another category is decision-support terminology, those types of things.
The electronic health record, especially HL7 is working on some things. DSTU
and CCIT, and then other interoperability standards.

Our next hearing is April 6 and 7. We’ll be HIPAA ROI focused, along with
maybe any other HIPAA items that we want to talk about, and then we’ll be
planning how these other subjects fit into July and forward through the rest of
the year. So that is what we covered.

DR. COHN: Okay. Well, great. Any other – please.

MS. GREENBERG: Well, I just wanted to clarify, then, that this – I realize
Mark has – Okay. Excuse me.

DR. COHN: You clarified? One is June and the other is April.

MS. GREENBERG: Your meeting is April 6 and 7, and Privacy is meeting June 7
and 8. Okay.

DR. COHN: Yes, that’s right. We are handling that. Okay. Yes.

And I would certainly advise you as – with the privacy and confidentiality,
this is the time to begin to think about setting dates for the last half of the
year.

Jeff, do you have any other additional comments on this?

MR. BLAIR: No, thank you.

And, Simon, we miss you, but Harry and I, I think, are going to really
enjoy working together.

DR. COHN: Yes. Yes, well, you are not going to lose me that easy. I am
still a member of the subcommittee. Well, thank you very much.

Agenda Item: Subcommittee on Populations

DR. COHN: Okay. The next report is from the Subcommittee on Populations.

DR. STEINWACHS: We had a very productive meeting. It was good to have Simon
there, so that we could talk about developing the agenda and we had the
immediate issues, which I’ll talk about in a moment, of finalizing the
recommendations out of the Population Report, but talked a fair amount about
how – the value of having both – taking, looking for targets of opportunity,
such as whether or not Medicare Part D and the drug benefit might provide some
of those, and the idea of short-term and longer-term targets, and the idea of
having a customer for what we want, and so we decided, as a committee, that we
would, between now and our next meeting, begin to share by internet mail ideas
for what the agenda would be and maybe have a conference call and some other
things about it between now and the June meeting.

Most of the work we’ll be doing between now and June really relates to
finishing up the Population Report and those recommendations. So that is the
major work item.

Certainly need to acknowledge and thanks to Simon, who asked the good
question about – Dr. David Brailer about the public health and population part
of the National Health Information Network, but that I would see as one of the
longer-term agendas, but, certainly, a very important one for the Population
Committee of how we can make recommendations that look to taking advantage of
that network for – population health.

The other that we talked about was trying to look for ways that there’s
complementarity between the Quality Workgroup and what the Population Committee
does, and, in the simplest of terms, there are certainly areas in which – where
the Quality Workgroup will be looking at quality of care, whether those are
metric issues or ways to collect data at the individual and organizational
level. The Population Committee is concerned with those same issues at the
population level, and so we thought that there were going to be, in this
agenda-setting process, some ways in which we would have very complimentary
agenda items. We have good overlap between the two and grateful that people
want to serve on both committees, because I think that is going to make it even
more productive.

On the Population Report, we shared with you yesterday sort of the
structure of the three areas in which we plan to make recommendations.
Committee members are going to be looking to make sure they are comfortable
with those recommendations and the background that goes with that. We will be
holding a conference call to try to settle those, and then move the report
forward such that we can bring that to you in June, those areas that relate to
standards for collecting data related to race and ethnicity, and, in some
cases, language, methodological-research issues and how to enhance access to
HHS data on race and ethnicity.

A couple of other items came up just to share with you. One, Russell was
pointing out an item that had been discussed before of substantial importance,
and that is issues about the different kinds of arrangements, limitations, so
on of access to data within the Department, whether that is data that comes out
of NCHS or other kinds of survey efforts, and Jim Scanlon, I think at one time,
had had someone who was going to try and pull together a report on that. That
person left. I think there’s now someone else. So there is some hope that we
will have some staff work to try and give the committee the kind of background
information we feel we need to understand variations and limitations on access,
because we have been looking at some of the issues around data centers and how
to make the information that the Department has that is useful for not only
researchers, but, many times, people in communities and so on to have ways to
look at population information directly that is relevant to their area. When
you raise things like geocoding, that certainly even brings it even more when
you think about the potential of some of that. So I think that is going to move
ahead.

Another came up out of a discussion, sort of a where to go, but I think was
stimulated by the presentation of the excellent recommendations on the Medicare
drug benefit that came forward is whether or not there might be an opportunity
– and I think Carol raised this – of using the enrollment process for the
Medicare D benefit as a way to enhance information that Medicare has on race,
ethnicity and language, and there was some real discussion about maybe the
strongest business case might actually be around language information, and so
Jim Scanlon said that he would have some contact with CMS around this and try
and understand where things were, so that we would have a sense of is this
something that we ought to be moving on rapidly if we are going to intercept
that train or – Judith says yes.

DR. COHN: The train may be –

DR. STEINWACHS: May be too late for the train.

MS. BEREK: It may be too late for the train, and it is an area of personal
interest to me, getting language information, and you’ll have to push very
hard. The train – it may be too late, but it is also extremely expensive to add
that, and once you get it, you have to be prepared to use it, so there are
serious problems –

There is one regional office that uses a translation service on their phone
calls, which is the New York Regional Office, and you might want to get in
touch with them to see how it’s been used and Nilsa Gutierrez is, in fact, on
the Populations Committee, although she is out of town at a meeting this week.
So you might want to go through Nilsa.

DR. STEINWACHS: Okay. Well, we’ll see if it’s –

MS. FRIEDMAN: I would just like to add that both our 1-800-MEDICARE number
and our HIPAA hotline also offer information in Spanish.

MS. BEREK: Yes, the only language we do is Spanish, routinely.

DR. STEINWACHS: Well, there’s also, certainly, if you look at issues around
quality of care, some other concerns is that the language issues and the
expectation that physicians are going to offer translation services in their
offices, and there’s also HIPAA issues. So it comes in both certainly at a
primary-service level, I think what you are saying, Judith, for Medicare, CMS,
and a secondary level in terms of –

MS. BEREK: In Medicaid, we have a lot of language services, and we – in
most of the states that have 11-15 waivers, we require all kinds of language
services on the part of health plans for them to enroll people, because one of
the things that happens with a mandatory managed-care plan is you might lose
the choice of having picked your provider because he or she speaks the language
that you speak, and so there is probably – there’s a lot of information on how
those language services have worked in Medicaid, and I can – before I disappear
– hook you up with some of the people who have done that.

DR. STEINWACHS: Okay. That would be great.

So that was another very productive item that came out of our discussion.

MS. GREENBERG: Just a little bit of clarification. It was my understanding
that the suggestion – which, as you said, may be already too late, because the
train has left the station – but was to use that enrollment process as a
vehicle for just collecting information about – better information about race,
ethnicity and primary language, which could then be used both to identify the
need for services, but also to track quality and outcomes and all of that.

DR. STEINWACHS: I think maybe the comments were a part about what the
business case is for it. Why would CMS want to reroute the train right now
anyway.

MS. BEREK: Well, it is both why would you want to reroute the train, and,
as an agency that provides services, does collecting that information put you
in a position of then having an obligation to provide the services, which I can
discuss separately, but that is just – you know, you are – it is a good
question, and just sort of think about it as it goes forward.

DR. COHN: Okay. Don, as usual, not an easy issue to think about.

DR. STEINWACHS: Well, you know, we wanted the Population Committee to be
topical and hardhitting, because we noticed the other committees are. So this
was one of the recommendations. We thought we would just go for it, you know,
and, you know, and so – help me make sure I don’t trip over anything too big on
the way. (Laughter).

MS. BEREK: No, and go for it –

DR. COHN: Yes, and actually, Don, what I would say is is if there is
something there – and, once again, I don’t know, whether it is or not – it
actually sort of aligns with the current Population Report. So I am presuming
that if, indeed, it is something, it could come forward in June.

DR. STEINWACHS: Yes, that would be great. Yes. Yes.

DR. COHN: But, I mean, or otherwise it probably won’t matter. I mean a
September recommendation from people being enrolled –

DR. STEINWACHS: Well, we’ll find out and share it back with you, Simon –
Yes.

DR. COHN: – starting in – you know, the last quarter of the year is going
to be a little late. So –

Okay. Don, thank you.

MR. REYNOLDS: Let me – another quick comment on this. I was remiss – any
time you put together an 18-page letter, it took a lot of hearings and a lot of
time, and I think the committee would like to formally thank Maria Friedman for
all the effort that she makes; and in a world where all of us seek consultants
at different levels and different qualities, Margret, who has been helping us,
is a star. So I wanted to make sure that was on the record. She stepped out,
but I wanted to make sure, before the meeting got done, that we did recognize
it through them, because we got to sit and listen and work on it. They had to
put it altogether. So thank you –

DR. COHN: Yes. Hear. Hear. (Applause). I hope Marie got that. Okay. Anyway.
(Laughter). Good. Okay. Harry, thank you.

Agenda Item: Workgroup on Quality

DR. COHN: Okay. Our next report, Bob Hungate, Workgroup on Quality.

MR. HUNGATE: A brief report. We met this morning, and I would like to
formally welcome our two members – two new members, Carol and Bill, who have
immediately participated in the future planning.

If there is anything that is accurate in describing the quality, it must be
that it is complex, because we had an active, dynamic discussion and concluded
that we were not going to quickly arrive at a future plan.

We did make one unanimous conclusion, that the charge from 1999 no longer
applies and should be regarded as history, and we need to do some serious work
toward developing a plan which has medium-term, middle-term, long-term plans,
so that there is a process of the Quality Workgroup doing the things that need
to be done for consumers in quality, and I think that is the best way of
articulating our broadest goal.

We, to that end, are going to be scheduling a retreat, if you will, where
we try to take our own inputs and work them into a workable work plan and
augment that by drawing some others into that process, so it is a little more
broadly based than just the committee itself. Probably try to do that in June.
It will need some careful planning beforehand, and that’ll probably call for a
couple of conference calls which we’ll be getting scheduled.

We will miss our outgoing two members, John Lumpkin and Peggy Hendrich,
both of whom made important contributions, John, especially in the
institutional memory of getting a Quality Workgroup that knew nothing about
what preceded us, a background to get through the report which is now basically
finished.

We have also conducted hearings which will need to be summarized in some
effective form. The minutes of both of those sets of hearings are on the
website and available. There may be some conclusions we can draw from those
that relate to the next work plan.

DR. COHN: Yes, I guess I would speak for myself, but I want to thank you
all, as having sat in on the Quality Workgroup, I think the meeting this
morning – I think the idea of going back and revisiting the charge is a very,
very good idea, and I think will help. I think we’ll have a better workgroup as
a result. So thank you.

Okay. Anything else?

Okay. Also happy to have two new members on the workgroup. So good.

Now, I will just briefly talk about NHII and then the Executive
Subcommittee.

Agenda Item: NHII Workgroup

DR. COHN: NHII Workgroup met yesterday from five to six. Mary Jo Deering
isn’t here, I don’t think, but she is obviously – Is she here? Oh, there she
is. Mary Jo, thank you very much for putting together a draft agenda for the
April 26-27 hearings. We’ll obviously be continuing to refine it, but this will
be another set of hearings looking at issues of personal health records.

I think we are probably also going to see if we can get the Federal Health
Architecture people in, potentially, depending on where they are, for at least
a first glimpse. I think we’ll be hearing about them in multiple venues. I am
sure they are going to have a piece to say in June, but, once again, at least a
beginning view of what this is and how it plays out, knowing that various parts
of the NCVHS Subcommittees and Workgroups are going to have different parts of
the architecture. I think, NHII probably has high-level. Standards and Security
probably has a lot of the more in-depth substance there, and, then, obviously,
there is going to be privacy and confidentiality issues also. So it is going to
be everywhere.

Oh, I forgot. I knew there was another committee I hadn’t thought of.
Populations, too. Okay.

So I think we’ll be looking at this from multiple different aspects, and,
obviously, it is going to be a full committee issue as we move forward.

So future meetings of the NII Workgroup are to be determined, but,
obviously – hearings, and we will be looking towards additional work plans for
the rest of the year.

MS. GREENBERG: What are the dates of the April meeting?

DR. COHN: April 26th and 27th.

MS. GREENBERG: Okay. In D.C.

DR. COHN: Yes, in D.C., actually, at the Holiday Inn a couple of blocks
from here, as I understand. Okay. And that’s, I think, been a published date,
at this point.

Agenda Item: Executive Subcommittee

DR. COHN: Now, the Executive Subcommittee is having conversations. We are
actually trying to schedule – I mean, normally, we have a full-day meeting in
the summer at some point. I think we all saw, as we began to come together with
new members, obviously, asking everybody to revisit goals and strategies and
work plans, that it would make a lot of sense if we could actually get together
for a face-to-face meeting earlier rather than later. So far, that has not – as
you can imagine, knowing everybody’s schedules plus the additional subcommittee
and workgroup meetings that are being scheduled, this is not an easy thing, and
we may – Marjorie and I, on Monday, will be revisiting dates and seeing if
there are any other dates we can eke out. We may wind up turning them into a
couple of conference calls. We are just going to have to be flexible about
that, but, certainly, I really am charging the Executive Subcommittee, at the
end of the day, to be really looking hard at all of the subcommittee work plans
and workgroup goals, agendas, et cetera, that are coming forward, so that we
all feel that we are getting a little more aligned. So I think that is really
the plan there.

MS. GREENBERG: We may – for the spring, we may need to – as you said –

DR. COHN: Be flexible. Be flexible. (Laughter).

MS. GREENBERG: – step back and have a few conference calls. Be flexible,
but we are still going to aim for a late summer in-person meeting?

DR. COHN: I think that will be the plan.

MS. GREENBERG: Okay. So we need to poll for that, too.

DR. COHN: Also. Exactly.

MS. GREENBERG: So we’ll talk on Monday, right?

DR. COHN: Exactly. That’s right. Used to think that John was the one who
had the bad schedule, but anyway – (laughter).

Agenda Item: Future Agendas for NCVHS Meetings

DR. COHN: In terms of future agendas and dates for future NCVHS meetings,
June 29th and 30th is the next full committee meeting.
September 8th and 9th after that, and November
16th and 17th. I suspect some time in the next couple of
months we’ll probably begin to identify and decide on 2006 dates.

MS. GREENBERG: Right. Now, that we have the new members, we will definitely
– we need to poll for 6000 – 2006. 6000, I don’t – I won’t be around, actually.

SPEAKER: Marjorie still plans to be here in 6000. (Laughter). There will be
an NCVHS meeting –

MS. GREENBERG: We don’t normally go all the way to 2007 –

DR. COHN: No, no, but we’ll do all of 2006.

MS. GREENBERG: We would do all of 2006.

DR. COHN: Yes. I will promise the committee that we will endeavor not to
have meetings that start on Monday or end on Friday.

Now, I think there are obviously a number of agenda items that I think we
are sort of seeing for the June meeting, and, obviously, this will be further
fleshed out. I mean, the notes I had made talked about, hopefully, a
presentation on the status of the RFI responses, and I think David had sort of
mentioned that. I think we are all hoping that there will begin to be some
substance by that time.

I think there is also a need for a briefing on the FHA, since we are all –
Federal Health Architecture, not that other FHA, but since I think everybody on
the committee needs to be – will have a role or a perspective on this. So
everybody needs to get at least informed and briefed on that.

We, obviously, already have had a request, and I think have accepted that
request, for some standards discussions or at least a presentation or two, and
whether that expands or not is to be determined, but we are also going to be
wanting to hear from the CCHIT, hopefully, in June, and I am blanking on it,
since the –

MS. GREENBERG: The who?

DR. COHN: Certifying Commission on Health Information Technology.

Assuming they are available and willing to present what they are doing at
this point, because I think, by that time, hopefully, there will be some things
for them to come and talk to us about.

MS. GREENBERG: Would you see that kind of with the status of RFI responses?

DR. COHN: Perhaps. Yes. Yes, I mean, it’s – we’ll figure out how – where it
best fits, but probably with some of the RFI responses.

Now, we had also talked some to Ed Sondik, and we will invite Ed to come
back for a little bit more conversation in depth on some of the NCHS stuff,
really into both vital systems – biostatistics redesign as well as, one of our
favorite topics, which is classification-development issues and status. That
will either be June or September, based on our schedule. Now –

MS. GREENBERG: The whole thing with Ed or classification?

DR. COHN: They are sort of two separate items, but they are also – Well, I
mean, I think we’ll see when they best fit in.

What I would like to do is to make sure, as we sort of move forward – and,
once again, this is, I think, something I have heard in all the conversations I
have had, we want to make sure that, in our presentations to the full committee
– we have presentations, but we really want to have time to discuss the
presentations with the presenters, and we obviously want to have things that
are discussable in those presentations. So this will be, obviously, something
that we’ll be working on, both making sure that the time of the presentation
works, but, also, sort of looking at the presenter’s presentation to make sure
that if they have an hour, there is enough time built in for there to be
conversation, because I think that is really where the value is for the
committee, and where we add value also.

DR. STEINWACHS: Simon, you had also mentioned about the committee getting a
report, either, I guess, June or September on the National Healthcare Quality
Report and the National Disparities Report.

DR. COHN: Thank you.

DR. STEINWACHS: I think maybe, from the point of view of our two
committees, if that could be in June. I don’t know whether it is going to fit
on the agenda. That would be helpful, both for the population and, I would
think, the Quality Workgroup.

MR. HUNGATE: A related comment. We have had ongoing recommendations
surrounding the issue of functional status, and it is clearly something that we
talked about in our session today, and it is still there.

It seemed to me that in the CMS work on health of seniors that that started
to address a data-collection task around health of seniors, functional status
in that group. I wonder if that isn’t something we ought to hear about
sometime.

SPEAKER: It is a huge amount of information.

MR. HUNGATE: There’s a lot of information. It was a big project. It is in
an area that we have expressed as important and of interest, and I don’t know –
you know – where that sits and what it has done.

DR. COHN: Well, let’s put that down as an agenda item, and let me tell you
how – I mean, I think functional status is important, and I think the question
is is knowing that this committee, even in my brief tenure, which, of course
isn’t so brief anymore, have written a number of letters and reports on
functional status without anything happening.

There has also been CHI work on functional status, which was sort of left
as, Well, we are not sure what functional status is. We are not exactly sure
what the business case is, and we need to do a little more work to clarify all
that; and, Steve, I may be misstating it, but that is how I sort of –

MS. GREENBERG: Yes, having been on that group, that is the way I would
characterize it –

DR. COHN: Well, but it is all pieces of that.

DR. STEINDEL: Simon, I think the best way to put it is the CHI Report left
the whole area open.

DR. COHN: Exactly.

MS. GREENBERG: It reached no conclusions.

DR. COHN: Yes, and I guess I am hoping that maybe we can sort of begin to
triangulate some of these things, the combination of since CHI is now under FHA
– the FHA that we are talking about – that maybe there’s ways to leverage,
hopefully, what will be renewed work on functional status, and, there, along
with what I would describe as what is the use case or business cases of it all,
and maybe there are some ways to put that together. Does that make – And I
don’t know when – That will be either June or September.

MR. HUNGATE: Just try to make sure that we keep it up in the view screen in
some actionable way, and I think it is a broad committee – It can be thought of
as a populations issue. It can be thought of as a Quality Workgroup, but it
keeps bumping up other places, and so I just – I kind of want to find ways to
keep it on the agenda in a workable way.

DR. COHN: Sure. Okay. Well, I think we have noted it, and thank you. So –

MR. SCANLON: The only thing is, as you look into this, I don’t think you
should associate function status with any particular measurement or
classification. I think you would be best served by looking at – or survey, for
that matter – and looking at what exactly, how people conceptualize it and what
are they using it for. Otherwise, you’ll have too many – you’ll have a lot of
data activities there, not functional status as you are thinking of it for –
depending on what the use is. It is not one classification. It is not one
measure. There are a lot of measures.

MR. HUNGATE: Yes, there are many measures, but – and many, many users, you
know? It is the one I use as a good example of chaos management, because what
you need in spinal injury is different from what you need in diabetes, in terms
of measuring status. So you have to recognize variability in measures.

DR. COHN: Well said.

Any other thoughts? I mean, we are obviously – I mean, we will continue to
develop – Marjorie had some others we forget. Please.

MS. GREENBERG: Well, I just wanted to make sure that we are clear on what
the action items are for the June meeting, because, then – because we have a
lot of subjects here, and, actually, the fewer action items at the June meeting
the more we can fit in. So we’ve got the Populations Report. Do we have any
other subcommittees or workgroups bringing forward action items at the June
meeting?

MR. HUNGATE: If the Quality Workgroup could achieve a work plan that we
thought was worthy of discussion, we would probably try that.

DR. COHN: But that is not for action. That doesn’t need to be voted on by
the full committee.

There may be a letter from Standards and Security, to be determined –

SPEAKER: Another 18 pages?

DR. COHN: Hopefully, a two-page letter relating to any sort of followup on
any of the open standards issues, if anything comes before that.

MR. REYNOLDS: Yes, e-prescribing. Any of the e-prescribing, yes.

DR. COHN: On e-prescribing.

MR. REYNOLDS: If any e-prescribing things come out in our meeting.

MS. GREENBERG: Maybe – but a short letter.

DR. COHN: These are short, yes. I mean, it’s –

MS. GREENBERG: Maybe short. Okay.

DR. COHN: Yes. Any other letters? John Paul, I’ll ask you, from Privacy and
Confidentiality?

MR. HOUSTON: I don’t believe there’s any other letters, other than this one
we have currently going. I think Mark had indicated the next one will be in
September.

DR. COHN: Great. Okay. Yes. But we’ll be talking as we try to put the
agenda together. I think we have come up with some good focuses of discussion,
and, once, again, my intent at the full committee is is to make sure that there
is adequate time for discussion, as opposed to just for hearing an issue. So we
will be looking at the agenda as we sort of move forward to provide that.

Now, I guess, at this point, we are sort of – is there any more – Marjorie,
do you have anything else?

MS. GREENBERG: No.

DR. COHN: Okay. Good. Okay. Well, in that case, what I want to do is to
thank –

MS. GREENBERG: Oh, wait. There is one more action item, just that I forgot.
The annual report of the committee.

DR. COHN: Oh, that’s another action item. Okay.

MS. GREENBERG: And possibly the HIPAA Report.

SPEAKER: Well, that is action, probably, in September, but –

MS. GREENBERG: Okay. But the committee’s annual report –

DR. COHN: Okay. Well, we are going to be ending up a little bit early. I
hope nobody minds too much. (Applause).

I, again, want to welcome the new committee members. I think you have
started out very well. We like to see people getting involved quickly, and none
of you have been shy. So I want to thank you for that.

SPEAKER: They showed up for the second day.

DR. COHN: They even showed up for the second – (laughter). Yes, I mean,
despite all of our words of all the work and all that, you seem to be engaged
and willing to be involved. So thank you.

Obviously, we want to thank the work of the departing members, who I don’t
think any of them are – probably all –

MS. GREENBERG: They departed. (Laughter).

DR. COHN: There’s Vickie. There’s Vickie. There’s Vickie.

Gene looks like he has already departed.

Judy, I, once again, want to thank you for your involvement, service for us
as liaison. I wish you a wonderful retirement.

MS. BEREK: Thank you, and I will try to help Don before I’m gone.

DR. STEINWACHS: Okay. Great. Thank you.

DR. COHN: Okay. And, again, thank you for your help.

As I said last night, I mean, you know, we used the term my door is always
open, but I am very responsive to emails, voice mails and everything else. So
if you have any questions, any suggestions for improvements, I mean, I am
really very open to all of that. So –

DR. STEINWACHS: Simon, I thought maybe with the geocoding capability we
could get a little thing hooked onto you so that we could track you at all
times, so that anytime we feel we need you, we could just bring up on the
computer screen where you are in the world.

MR. REYNOLDS: That would be RFID. (Laughter).

DR. COHN: You know, the bad news is with blackberries, I think we actually
effectively have gotten that at this point. (Laughter).

Marjorie, do you have a comment?

MS. GREENBERG: If anyone has any preferences for our social in June, let me
know. I mean, it will be more informal. We won’t – you know – but we do have a
little –

DR. COHN: Yes, we do generally try to have dinners out of – after the first
day for every meeting. So – and, Marjorie, through her efficient management,
has provided us a reserve, a little bit of a kitty, so – which will be useful.

Now, finally, just as, I think, we have talked throughout the days, I mean,
obviously, this work, you know, is not done without staff, and we obviously
want to thank the staff for their support, Marjorie and Jim, and, obviously,
the people that support you, and Maria, Anna Poker – Who else is around here?
Everybody –

MS. GREENBERG: Everybody –

DR. COHN: Debbie – really want to –

MS. GREENBERG: Kathryn, Michelle, Julia –

DR. COHN: Yes, exactly. Mary Jo, exactly.

I mean, you know, none of this would happen without them, you know, but,
just like us, this is on top of their day job, so we really want to thank them
for their contribution and help.

Finally, let me thank Vickie again for her service, and we really – and
we’ll obviously talk more on the taxi on the way out, but anyway, with that,
this meeting is adjourned.

(Whereupon the Full Committee was adjourned

At 1:00 a.m.)