[This Transcript is Unedited]
Department of Health and Human Services
National Center for Health Statistics
Joint Meeting of
Subcommittee on Privacy, Confidentiality and Security
Subcommittee on Population Health
June 15, 2011
Double Tree Hotel
300 Army Navy Drive
Arlington, VA 22202
Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030
(703) 266-8402
TABLE OF CONTENTS
P R O C E E D I N G S (2:50 p.m.)
Agenda Item: Welcome and Introductions
DR. FRANCIS: This is a joint meeting of two subcommittees, the Subcommittee
on Populations and the Subcommittee on Privacy, Confidentiality and Security.
We would like to welcome everyone to this meeting. I believe that, as is the
case with subcommittees, what one does is go around the room and introduce
oneself at the beginning.
I am Leslie Francis. I am from the University of Utah and co-chair of the
Privacy, Confidentiality and Security Subcommittee, and I don’t have any
conflicts.
DR. HORNBROOK: I am Mark Hornbrook, member of the population committee from
Kaiser Permanente; no conflicts.
DR. MIDDLETON: Blackford Middleton, member of the population committee; no conflicts.
DR. STEINWACHS: I am Don Steinwachs, Johns Hopkins, a retiring member of the
population subcommittee.
MR. BURKE: I am Jack Burke. I am a new member. I am compliance officer and
privacy officer Harvard Pilgrim Health Care, a health plan in New England with
about 1.3 million members. I am clinically trained in pharmacy and business.
DR. FITZMAURICE: Michael Fitzmaurice, Agency for Healthcare Research and
Quality.
DR. KAPLAN: I am Bob Kaplan. I am from the NIH, although I haven’t been
there very long. Before that I was a professor of public health and medicine at
UCLA.
MS. KLOSS: Linda Kloss, a new member. My background is health information
management.
DR. COHEN: I am Bruce Cohen from the Massachusetts Department of Public
Health. I consider myself a public sector eclectic epidemiologist. I worked for
the feds. I worked for NCHS for 10 years before moving up the food chain to
work for the Commonwealth of Massachusetts, and I even moved further up the
food chain. I do a lot of community health in my town. I am a town meeting
members and I chair the Health Advisory Committee, and I am president of a
501(c)(3) called Friends of Brookline Public Health and work on community
health networks in the western suburban area.
PARTICIPANT: Now that you’re here, you’re at the top of the food chain.
(Laughter)
DR. MAYS: Vickie Mays. I am at the University of California Los Angeles. I
was previously on Populations a long time ago. I direct a center on minority
health disparities where we do a lot of community-based work. I think that’s it
for now.
MS. MILAM: Hi. I am Sallie Milam. I am on Populations as well as Privacy. I
am West Virginia Executive Branch’s chief privacy officer. The West Virginia
Health Care Authority sponsors the state privacy office, and we help facilitate
compliance for HIPAA and all of the other privacy laws across the executive
branch.
I also serve as the Health Care Authority’s privacy officer. We are the
state’s certificate of need, hospital rate setting, hospital discharge
database. We now are working with two other departments to establish an
all-payer claims database, and so I have an interest in health data and
privacy.
DR. GREEN: I am Larry Green. I am from Denver, with weather like this all
the time. I am a family physician, spent a quarter century practicing medicine
in academic settings and teaching and doing all the things that academic types
do, I guess.
At this point in my career, I just do projects. I work for the University of
Colorado. It works like a holding company for projects. All my projects relate
to one word, redesign. I am agnostic about what is redesign, just so long as it
has something to do with moving the U.S. health care delivery system towards
sustainability and better performance. That makes this a nice, comfortable home
for me on the Populations committee of NCVHS.
I am also on the Quality Subcommittee. To start bothering Blackford over
there, and Leslie, I think we should listen to what Marjorie said a while ago
about how it’s not in statute how we organize ourselves. I think we should
think creatively about how we need to organize this subcommittee work, because
we’re overlapping, and we’ve got strong shared interests, and I am not sure how
is the best way to get us organized so we can be staffed properly and that sort
of stuff, but let’s start thinking about that.
DR. SUAREZ: I am Walter Suarez, and standards would be a way to get
organized.
(Laughter)
I am, as you can see, a standards person. I actually worked in the late
1980s and early 1990s in the Minnesota Department of Health. I have lived in
Minnesota for a number of years and worked there. That is how I got hooked into
administrative simplification. Back in those early 1990s, Minnesota was going
through health reform. They put together a big package of health reform.
They had heard something about administrative simplification that nobody
understood. They somehow found me in some cubicle in some place in the
department and asked if I would be interested in drafting something that could
go inside a legislative initiative in the state.
Back then I was working with a lot of people in Minnesota and have certainly
been part of the WEDI efforts and the work of other change efforts. So we put
together some initiative that became the 1994 Minnesota Health Care
Simplification Act, actually, two years before HIPAA. So we beat HIPAA by two
years. But then I was able to link the standards work with public health. My
big passion is for the public health.
In the 1990s, with all the work that HIPAA was doing with respect to
administrative simplification and standardization of claims data and all this
information, we started thinking about how public health can be part of this,
too, and benefit from it, really not be a spectator on the side.
With a few people, we joined and worked together to form something called
the Public Health Data Standards Consortium, which has been since then a major
force really in promoting and pursuing standards that apply and are used by
public health that are the same standards that are used in the rest of the
industry, and then bringing to the rest of the industry the needs from public
health with respect to data and data standards.
So it has been just a terrific way of moving in the two spheres that I feel
are the most passionate for me, standards and public health. So I am very
pleased — and certainly privacy and security was one other major area that
I’ve been involved in. So I am a member of both subcommittees in that respect.
MS. GREENBERG: A Renaissance man, obviously.
I have introduced myself, but I am Marjorie Greenberg. I am at the National
Center for Health Statistics and the executive secretary to the committee.
Since we’re telling a little of our history, very briefly, I’ve been the
executive secretary since I guess 1997. I’ve been working with the committee
since I came to NCHS, since 1982, but really had worked with the committee
before then as well.
My two passions also are population health and standards. I worked with
Walter in establishing the Public Health Data Standards Consortium. It has a
great ride and is very well — we kind of nurtured it like parents, but now it
has taken off as a very well-accepted organization.
My other hats are that I am the head of — this is truth in advertising here
— the WHO Collaborating Center for the Family of International
Classifications, which includes the international classification of diseases
and the international classification of functioning, disability and health. So
you see the standards there and also the population issues.
My staff are responsible for the clinical modifications of ICD, ICD-9-CM and
ICD-10-CM, also informatics work that we are doing to bring standards to public
health and information from public health to the standards work, and working
very much now in standards for messaging between vital records and electronic
health records.
Then, of course, also we support this committee. So it’s a lot of fun.
DR. FRANCIS: I believe that there are people on the phone.
MS. HORLICK (via telcon): Hi. This is Gail Horlick. I am staff to the
Subcommittee on Privacy. I have actually been staff since I think about 1998.
For about three years in maybe the late 1990s I was lead staff.
I am at CDC in Atlanta. I am the privacy lead in the Office of Scientific
Integrity.
DR. FRANCIS: Gail, is there anyone else with you there?
DR. CHAPPER (via telcon): Hi. This is Amy Chapper. I am with CMS, Centers
for Medicare and Medicaid Services. I am also staff to the Subcommittee on
Privacy, Confidentiality and Security, and I do privacy policy here at CMS.
DR. FRANCIS: Thanks.
Maya moved so I missed her. Maya?
MS. BERNSTEIN: Hi. I am Maya Bernstein. I am the privacy advocate of the
Department. I sit in the Office of the Assistant Secretary for Planning and
Evaluation, and I am the lead staff to the Privacy Subcommittee.
I started my federal career at the Office of Management and Budget in 1990.
I worked there for nine years. I got a law degree, was in the private practice
of law for a short time doing electronic commerce. When the dot-com era ended
and 9/11 happened, a lot of people got laid off. I returned to government as a
privacy advocate of the IRS. That lasted a year.
(Laughter)
But I’ve been much happier here. I’ve been at the Department of Health and
Human Services since 2005.
DR. FRANCIS: Did we miss anyone else?
MS. GREENBERG: We need Debbie to come to the table because —
DR. FRANCIS: Gail, do you have your colleague with you there in Atlanta?
MS. HORLICK (via telcon): I am actually teleworking today, so Natalie has
the number. I don’t know if she has called in.
DR. FRANCIS: Thanks, Gail.
Did we miss anybody else around the table?
MS. GREENBERG: I suggested that Debbie come because you might —
DR. FRANCIS: Debbie should, and then there are others in the back.
MS. GREENBERG: Maya serves as lead staff, as you heard. We have the system
of lead staff and then staff from throughout the Department to support them.
That’s our liaisons. They’re very helpful in identifying staff from different
agencies. But we have not had a —
DR. FRANCIS: I was going to ask if there is a lead staff to the Populations
Subcommittee.
MS. GREENBERG: We’ve haven’t had a single lead staff person for populations.
There are so many different areas that are covered that what we have done is
identified different people among the staff in the Department who can take on
particular issues, and also Susan Kanaan has worked closely as a writer and
more, really, like I said, helping us set up the first Community Health Data
Workshop. She is not at this meeting, but you will be meeting her later.
And then Debbie makes sure that this all gets tied together. So why don’t
you introduce yourself?
MS. JACKSON: Debbie Jackson. I have been with the federal workforce about 20
years, having come from the Accreditation Council, Graduate Medical Education,
in Chicago. So anytime you mention accreditation and certification, I worked
with internal medicine as specialties.
From there I came to HRSA, my first federal position, and then NIH, women’s
health research, and then here. So I’ve got a good grounding into all of these
advisory committees. This has been one that I’ve stuck with the most.
DR. FRANCIS: We should ask the public and liaisons too.
DR. BOENNING: I am Doug Boenning. I am a pediatrician part-time at ASPE.
MS. GREENBERG: And once was lead staff for one of our workshops.
MS. JONES: Katherine Jones, staff to the Executive Subcommittee and at NCHS
as well.
DR. QUEEN: Susan Queen. I was at NCHS years ago, then HRSA, SAMHSA. Now I am
in ASPE. In a former life when Vickie was the chair of the Subcommittee on
Populations, I was lead staff to that subcommittee.
MS. WILSON: Nicole Wilson, Veterans Affairs Office, Health Information. I am
a liaison.
MR. DeCARLO: I am Michael DeCarlo with Blue Cross-Blue Shield Association. I
am an observer, but Walter and I are both co-chairs of the CCHIT Privacy
Advisory Group.
MS. KAHN: Hetty Kahn. I am from CDC’s National Center for Health Statistics
and I am staff to the Subcommittee on Privacy, Confidentiality and Security. I
work with Marjorie Greenberg at NCHS doing vital records standards for
electronic health records.
MR. RODE: Dan Rode. I am an observer from the American Health Information
Management Association.
MS. WEIKER: Margaret Weiker with HP. I am also representing ASC X12 and
NCPDP.
MS. SHEPPARD: Cathy Sheppard. I am the chair of ASC X12, observing today.
DR. FRANCIS: What we thought we would do is start this meeting with updates,
a little bit more than we did in the full committee, with respect to what
happened in the two workshops that we had, and then the June 9 meeting at the
Health Data Forum that was sponsored by HHS and the Institute of Medicine.
Sallie?
Agenda Item: Report on Workshops
MS. MILAM: Leslie, before we get into the meat of it, I would like to invite
Doug Boenning to join us at the table. You are the Populations staff, and I
would like to give you a more direct opportunity for input.
MS. GREENBERG: We have Virginia Cain from the National Center for Health
Statistics, who is also staff to this subcommittee. Virginia, are you on the
phone? I have an email here from her saying she has been trying to call in to
the number on the agenda. So if there is a different number she should be
using, can we email it to her? Thank you.
DR. FRANCIS: So rather than rehash, maybe I could just — several of us were
at the June 9 meeting. Many of us were at the meeting, our workshop, on the
12th, or our workshops in February. Maybe for new members, we should
just open it up for questions. What would you like to hear about those events?
What we learned —
DR. COHEN: It was interesting hearing the two reports. I was struck, now
working at a state, about how much activity there currently is ongoing linking
states to community initiatives around indicator development.
I don’t want us to try to reinvent the wheel. I think there is a lot of
activity already going on to provide technical resources and support, which I
think is the role that we can play.
So I was just curious about the nature of the relationship between the
federal perspective, the private perspective, and the state perspective, trying
to integrate them all in providing support for community health initiatives.
The other question that came to my mind as I listened to the discussion is
what do we mean by community really? Are we talking about geographic entities?
Are we talking about population groups? Are we talking about other self-defined
folks who have common interests in either particular issues or general
quality-of-life issues?
DR. FRANCIS: Vickie?
DR. MAYS: I just want to build a little bit on what Bruce was saying,
because I guess maybe also at the state level there is, I think, a lot of the
work that is being done. Some of it is actually well funded. You were talking
about foundations giving $9,000. Well, in California they’ve had several
foundations. There has been major money that has been put into the notion of
data and data linkages.
Also, the reason I wanted to say something now is just to give you an idea
about, at the federal level, for those of us, for example, who have these
disparity centers, which would be — I am sorry Bob is not here — the National
Institute on Minority Health Disparities, in the center renewals, for example,
we were asked to actually come up with plans as to how we would disseminate our
data that they fund to the communities.
I did a whole thing on line engaging people on a national level for
examples, and I got a whole slew of things, kind of strategic ways that people
put up data to make it easier for people to do it in terms of even things from
Google Docs. So there is really, I think, a lot of activity.
The major states — and I am probably going to be biased here — but it is
like California, Ohio, Minnesota, Wisconsin, those are the ones that I know —
oh, and Connecticut — are just doing a lot of work.
I guess when we were talking I had the same sense of hearing this, like it’s
kind of at that new level when actually the states have said we have got to get
this data out. If we fund this data, it is going to be out. But NIH I know is
also doing the same thing right now.
DR. KAPLAN: I am kind of interested in linkages. What I found intriguing in
Larry’s description of the $9,000 stuff is how there are a lot of bootstrap
efforts going on to link health measurement cost, behavior, all that stuff. I
am really curious about how the public/private data sets can be melded, because
I give a lot of talks and always ask the question, why don’t we have a private
sector Dartmouth Atlas? Do you know the reason? The Blues don’t want us to. So
you’ve got to get the health plans involved to make this work. To get the
health plans involved, you’ve got to get the employers to make them. And then
suddenly you’ve got a basis for a conversation about cost, if you’ve got good
data on health.
So I want to see what they are doing now to build them together and what we
might do to nurture that activity.
MR. BURKE: Is the opposition about proprietary?
DR. KAPLAN: Yes, absolutely. You can’t blame them. It’s a third part in the
drama, but it’s not helpful in the bigger picture.
Fundamentally, the great thing about the law, whatever else is true about
it, it is starting to get a whole lot more people thinking about the entire
concept of population health. This is new to most people, so we need some help.
But I do think the melding of the public/private data is a really rich area for
us to focus on.
DR. FRANCIS: Jack and then Blackford and then Linda.
MR. BURKE: How much less useful do you think the data would be if the
proprietary information were stripped out?
DR. KAPLAN: Different purposes have different uses, but what is often done
and what the all-payer claims databases that are emerging do is sort of keep
the proprietary stuff in their back room, and here we aggregate it in a way
that can be useful for our purposes in large part. But even for very specific
targeted interventions, you can often strip off — all you’ve really got to
keep private is the price. Utilization is actually okay to allow.
MR. BURKE: But price is really the only proprietary element?
DR. KAPLAN: From my and your perspective, not always from the plans’, but
yes.
MR. BURKE: Our plan —
DR. KAPLAN: Are you? Well, then you’re a good guy.
MR. BURKE: But what I’m trying to make sure I’m not the only plan that
thinks that way is have you heard other data elements categorized in a similar
way besides the fee that has been negotiated between the plan and the provider?
DR. KAPLAN: Well, some are very nervous about being able to marry total
spend on a certain category because as we move beyond the unit of the DRG or
the CPT, then that becomes the proprietary thing.
DR. FRANCIS: Just a couple of quick comments that I will interject here.
First, the definition of community, mostly it was geographic in the discussions
that we had, although there were clearly — some were virtual, and there was
some significant effort with respect to diversity and disparity within
communities, local communities. But primarily geographic.
The other comment I would make was that we were working — we had Denise
Love here from NAHDO, and we plan to follow up with her. We were working very
carefully with respect to the question of what the states want, what some
states feel that they need. So at least we weren’t leaving the states out;
let’s put it that way. That’s just quick comments on it.
I said I was going to go around, so Blackford, you are next.
DR. MIDDLETON: Thank you, Leslie. In fact you touched on the thing that I
was beginning to think about a little bit, I guess. I didn’t hear all the
testimony at the sessions, but it strikes me that the question Bruce raised is
really still foundational: What is a community? What is the population that is
influencing health for any individual? And how does the population influence
itself, if you will, across the population?
So this idea of the e-populations or cyber populations or social networks
and all the rest I think actually puts a new spin on what we think about in
population health. We know the influences aren’t clear, both in social and
political channels, as we’ve seen around the world and also in the health
channels.
I think this also suggests that an area of inquiry might be around, given
that sort of nongeographic or the geographic definition of population as well
as the nongeographic definition, what does it imply in terms of methods and
analytic approaches to those data, and particularly those data which might be
self-reported in things like PatientsLikeMe and could be extremely powerful and
insightful?
DR. GREEN: Well, to just keep going for a minute about this community
definition, how many people know what the Folsom Report is? You do?
PARTICIPANT: Well, you sent it to me.
DR. GREEN: Marion Folsom was treasurer of Eastman Kodak and a former
secretary of Health, Education and Welfare. In 1967 Harvard University Press
published a report called Health Is a Community Affair. This was the
report that actually engendered things like community health centers. Its
definition of community that led to a phrase, as I work this difficult question
of what constitutes a community, that formulated, and perhaps the key
intellectual contribution of that report was that it formulated the notion of
community of solution. They argued the case, but intellectually with evidence
that existed by 1965 and through 22 U.S. case studies, that almost no important
health problems know where the city limit is, and they don’t know where the
state boundary is, and they don’t know where Blue Cross-Blue Shield begins and
ends and where the Harvard plan begins and ends; and that your definition of a
community to be a solution to a health problem has to have sufficient agility
that it has a chance at solving the problem.
So I just want to advise caution about the need to get too precise on the
definitional path about what constitutes a community. It overstates a bit, but
it could become a bit of a fool’s errand, and it might use our next 18 months
up.
I would prefer to have a broad understanding of community rather than a very
tight, narrowly drawn definition of community for our work.
DR. FRANCIS: Linda was next, I think.
MS. KLOSS: Thank you.
I actually have two contextual questions. I enjoyed reading the reports and
the rich variety, but I wondered what the subcommittee had in mind in designing
this forum, setting out to do. Was it simply to learn what flowers were
blooming and learn from that in order to inform next steps, or were there some
models that emerged from this and some thought about putting together a report
that could become a primer on community initiatives or something? Some
backgrounding would be helpful to me as a new member.
DR. FRANCIS: Why don’t we ask Populations, since they took the lead first,
to comment on that, and then I will do it on behalf of Privacy.
MS. KLOSS: Thank you.
DR. GREEN: Yes. You did a very nice job of summarizing it. Just think about
it for a minute. You’ve got health information exchanges setting up, you’ve got
high tech, you’ve got the ONC, you’ve got meaningful use, you’ve got public
health-driven community data initiatives.
We could see all this stuff going on, and it suggested that something was
trying to happen. The first hearing was explicitly an exploration based on the
assumption that we should go to the front lines in diverse communities in
different locations across the country and find people who were trying to do it
and ask them to come and tell us what they were trying to do, why they were
trying to do it, who they were doing it with, how they got started, how were
they governing themselves, and what were their problems and that sort of stuff.
Out of that, one of the recurring themes, besides the lack of
infrastructure, was this confidentiality/privacy/security stuff is killing us.
Leslie very succinctly pointed out there weren’t just a few or tens or
hundreds, there were literally thousands of state laws that are in play here.
So it is a very complex area that stands to be a major impediment.
That led to the second one.
DR. FRANCIS: From the perspective of the second one, first of all, there are
all these different state laws, and that is hard when you take efforts to put
what states are doing together, which is certainly happening with respect to
all-payer claims databases at this point. But we are also concerned that the
safest thing to do is to lock stuff up if you’re worried about one bad thing
happening. And that is a terrible solution.
On the other hand, what we really wanted to try to brainstorm with people
about was what are some of the kinds of privacy/confidentiality challenges that
are coming up for them? Community mistrust — one example that we heard in
February was getting data about lead that actually zeroed in on a particular
building. So if you knew someone’s address and you knew that there was a
constellation of high lead levels — I mean they wanted to know that
information for feedback to try to fix the lead levels — but if you tried to
go public with that information, there was the possibility that people could
very easily make inferences about individuals from an address. So that was one
example of a challenge.
We wanted to get examples of different kinds of challenges. We wanted to try
to get data about attitudes. There’s a lot of data out there that people want
to be asked to have their data used. When asked, they say yes, but they get
distressed if they believe that their data have been used without their having
been asked.
How to try to address that kind of question? It seemed to us that — and I
think everybody recognizes that going back and getting consent from people is
hopeless. On the other hand, de-identification we heard is problematic in
certain respects, not just the can you re-identify but the whole questions
about privacy budgets, and so on.
We were trying to figure out what some of the proposed solutions are, what
problems there are with them, and what are some of the new ways groups might be
finding to address the challenges that we had also identified. So we were
trying to bring those two things together.
It is actually much — I don’t want to say it’s easier, but there are a lot
of exciting examples of how people are using data. It is harder to get
full-blown discussions of how people are handling the privacy challenges. I
think probably the best examples are community education, transparency. When I
asked this question at the forum on Friday, the answer people gave — and it
was unanimous across the panel– was you have to live in the community for a
long time and get the trust of community members. That was from New York. That
was from the woman who works with Alaskan native groups. That is not easy if
you are new to the community.
Marjorie?
MS. GREENBERG: I think, going back — everybody has added to what has been a
very rich discussion, the two workshops, and I think getting back a little bit
to Linda’s question and I think Bruce’s too, maybe, is what is the role of this
committee and of these subcommittees who are just acting on behalf, obviously,
of the committee — and I think that is what we are hoping to still have some
discussion on but also probably will require follow-up teleconferences or
whatever.
But as you will notice — and we don’t have the full report from the second
hearing, because we did put this together fairly quickly in order to have
something for the meeting last week, the Todd Parks meeting on June 9, so we
will be getting, I think, a fuller set of minutes or summary from the May 12.
But you see there are findings, there are observations and preliminary findings
even from the first hearing but not recommendations yet. I know Leslie
mentioned I think this morning about possibly writing up some models or use
cases, et cetera. We did talk about a primer. So that is one way to go.
Another is we may have these observations and findings, but obviously one of
the focuses of this being a federal advisory committee to the secretary was are
there things that this committee could recommend to the secretary or, more
broadly, the Department, that could, even in this time of resources constraint,
et cetera, advance some of this work or enable some of this work? And from
these two hearings, is there enough to lead to those types of recommendations?
Does there need to be more exploration, possibly another workshop or hearing?
With the first workshop, Susan Kanaan actually talked with each of the
community people and gathered quite a lot of information before the workshop so
that we could have a lot of discussion and interaction at the workshop rather
than long presentations. They also provided background information, so we got a
lot more information than is here.
So I think these are some of the approaches. Ultimately, I guess — usually
this committee deals in recommendations, but also I mentioned the primer that
it had done and also, although the committee — and I am probably not telling
you something you don’t already know — but although it makes recommendations
to the Department, it really, over its whole 62-year history, whatever, has
spoken much more broadly to the community, whatever that community is, to the
health industry, to the health care industry, to public health, a little less
to just the public and consumers.
So I think that there are a lot of different ways you can go, or you could
go in all of these directions, but I think that from the point of view of next
steps, those are some of the possibilities.
DR. FRANCIS: I think we have got about 25 minutes. What I was going to
recommend is that Sallie and Larry carry the ball for a few minutes, picking
people’s brains about Populations’ next steps, and then that we turn back to
the last maybe 10 minutes to pick people’s brains about Privacy next steps.
So Sallie and Larry.
MS. MILAM: Before we jump into that, I wanted to come back around to a
discussion we had about a half-hour ago on the definition of community and how
we were handling that.
I guess I viewed it as a fairly loose definition. We had some true
communities come in that were geographic regions, but then we also had local
public health. We had state public health or their representatives. We also had
health information exchanges. So that is probably most important from a privacy
perspective because you look at different laws and regulations that set forth
your privacy requirements.
For the most part, a state public health organization is not going to have
the same challenges with privacy as a health plan will in terms of disclosing
the information for research or whatever that non-TPO disclosure would be.
A state public health organization, as we heard from NAHDO, has challenges
around meeting a very general mandate, which is generally the case, and at what
level do they disclose. For example, if they get 10 diagnoses, when does it
become identifiable?
So I think when we talk about community, we need to look at the different
actors in the community and the different legal requirements that impact the
different kinds of actors. I don’t think it is apples to apples if we caught
all of community. So I just wanted to throw that in there as some background.
Mark?
DR. HORNBROOK: One of the definitions of communities from an economic
perspective was externalities, as the actions of one affect others.
One of the things that we haven’t talked about is the effect of the economic
recession — job loss and then getting upside down on your mortgage, the
structural unemployment, the people who have been unemployed for 2 years and
cannot get employed. They are almost being excluded from anybody who says,
“If you’re unemployed, don’t apply here” kind of thing. So what that
does is cause a stress. People have to move out of their houses and become
homeless or they move in with families and friends, who in turn become stressed
because the density in inside the houses or the apartments goes up.
So the question is, is it important for us to get those kinds of aggregate
health pressures to the fore? Because these are things that are happening, and
the re employment recovery is so much slower this recession than almost since
the Depression. If it hadn’t been for World War II, the Depression wouldn’t
have recovered.
Then there is the other issue of the class warfare. We are not talking about
the possibility of raising taxes a little bit on lots of people who can pay to
effect a redistribution towards those who need more. We are talking about
lowering the benefits to the people who are the neediest and not raising any
taxes on the higher income. So that is kind of a class warfare going on in this
country.
Somewhere in the world, we have to be honest about the health impact on the
less-advantaged people in this country. This committee has the data, the states
have the data, if somebody is going to be honest about tracking that as well as
we can. If you live in a declining environment because you’re in a poor house
and bad air because of the traffic or an industrial company nearby or you are
working in a toxic environment because you have to work in a dirty employment
base, there is another kind of externality going on because we aren’t forcing
the companies to clean up their pollution of the environments.
So there is everything that sort of works if you look for it, pushing things
down as opposed to bringing up. So we are pushing towards inequality, not
equality. The whole society is becoming — the highest people are sort of
becoming healthier, but certainly the lowest class are becoming unhealthier.
DR. COHEN: Can I follow up on Mark’s comment? You raised a fundamental issue
to me. I appreciate your definition of community, and I totally agree with you.
When you are working with communities, people know what communities they’re
part of even though there might not be rigid definitions. I am comfortable with
that, but that raises an entirely equally important definitional issue: What
are we talking about when we talk about health?
You were talking about economic impacts here and social injustice. A lot of
the perspective focuses on improving access and quality of medical services
that are delivered, and that is really a very small piece of improving the
quality of life in our communities.
So I think I would like to push the Population Health subgroup to think more
broadly about what the definition of health is and how we can integrate the
advances of data that are available through the systems and linkages that are
developing with issues that I think communities need support on more broadly
and the issues that they define as their health, whether it’s education or
transportation as well as the more clearly defined medical and disease-related
outcomes. That is one point.
The other point, it is really exciting to be involved in increasing access
to data, but data don’t make decisions, and sometimes there is a false sense
that by providing data, the truth reveals itself. I think every community and
every group deals with data differently. So one of the tasks that I think would
be reasonable for us is to provide data and provide tools that help communities
in thinking through how to make decisions rather than creating decisions for
communities.
My final point is I have been working in this area a long time, and one size
does not fit all. What level of data is actionable? I think neighborhood works
in a lot of cases, but sometimes it’s the state and sometimes it’s the block
and sometimes it’s a large community. Policies in communities can affect the
environment of improving the health in that community.
That is important to think about what level is actionable, because it leads
to issues like Len brought up about linkage. If we’re linking at a community
level or neighborhood level, some of the issues around individual-level linkage
in privacy end up being of less concern.
So I think we really need to focus on creating methods. “I’m from the
government, I’m here to help.” I think what we can do is provide toolboxes
and resources and data to essentially stimulate communities thinking more
thoughtfully, and many communities have already begun the process, about how to
improve the quality of their lives.
DR. GREEN: I think those three points are well made, and also they were well
reflected in the February meeting. It doesn’t do justice with your outcomes
here, but I heard you say we’ve got to adopt a very broad conceptualization of
health, not a narrow one that it’s what doctors do or whatever. It’s going to
have to be a broader definition that can incorporate the social determinants of
health.
Another one was that data don’t act by themselves. Dan Ondeoli(?) told us
that 18 ways from Sunday. This notion of doing with and not doing to was a
huge, powerful theme that ran through every one that was being successful. They
were working with, they were not trying to do something to. They weren’t
rescuing. It’s wasn’t helicopter stuff; it was roll up your sleeves and work
together type stuff.
I think for our new members and everything, you guys pushed back who were
there, but I think we can just accept the fact that Bruce’s comments are
dead-on and that we are pretty much all on that same page. I don’t think you
have to argue that case here.
DR. NICHOLS: I would definitely agree with the page, and I am proud to be on
it, but I don’t us to forget that while data don’t make decisions, an awful lot
of folks still don’t have the data. So it is actually also, in my view,
incumbent upon us to specify, if you will, a minimum data set on population
health that people ought to come to expect access to, because part of the
reason, just in Virginia where I live, the disparity in, shall we say, life
chances is tenfold. People don’t know what the truth is out there, and there is
no mechanism to get that knowledge to them in the absence of a standard that is
set by smart people like you all.
DR. MAYS: There was something that Bruce said I don’t want to lose sight of,
and it kind of gets wrapped up when we say social determinants. That is, if you
talk with a community, what they want is something we don’t do, is the
linkages. For them health has to do with things like — and Mark was even
saying things like this — like the housing market is going down and I’m losing
my house and I’m becoming homeless. Or what happens is they want to know about
transportation and pollution and feeling like the worst neighborhoods have the
worst pollution.
The question that is hard here is that we are tasked to deal with HHS. But
what you really want, if you go to the community, they’re not interested in
just the diseases. They are really interested in what are the social
determinants. For me the question would be the extent to which, if you talk
about, well, here’s what you should be able to get, can we talk about that
relative to other federal agencies? Or do we also want to try to make sure we
don’t limit ourselves?
I just finished being on the IOM Committee on Leading Health Indicators. We
pushed for things like educational attainment. We pushed for — so you have a
foundation upon which to build in terms of that particular IOM report. I want
to make sure — that is really difficult to do that, so I want to make sure
that Populations can talk about whether it can extend itself or if it’s willing
to make the suggestions of what those other things should be.
DR. FRANCIS: For those of you who were not at the forum on June 9, the first
two talks were Cabinet sisters, Kathleen Sebelius and the administrator of the
EPA. Part of the whole thinking of that session was how to harness data from
both agencies.
DR. KAPLAN: It does feel like there is a lot of wheel reinventing being
done. As Vickie mentioned, there is an IOM report — actually, it turns out
there is a whole suite of IOM reports that all say pretty much the same thing,
so the Committee on Public Health Strategies to Improve Health, how to report
on measurement, that came out in early 2011, and there are actually several
other reports that have all pretty much come to this same conclusion. It does
kind of feel like we are sort of replowing some old ground.
MS. GREENBERG: I would say to that yes and no. But we can go there a little
bit later.
I wanted to react to something Len said that caught my ear about a minimum
data set. Actually, this committee has a very long history of working on
minimum data sets for hospital data, ambulatory care data, long-term care data,
also. I go way back with that myself, so a set of standards for at least a
minimum data set is music to my ears, thank you.
I don’t know if you are all familiar with a recent article by — it’s so
recent, it’s in the last year — by a former member of this committee, Dan
Friedman, who is a former colleague of Bruce Cohen’s, and Gib Parrish, a
pathologist actually, but he was at CDC and he has been up in New Hampshire or
Vermont — I think Vermont — for a number of years, and they were very much
involved with developing the whole vision for health statistics in the
21st century. They fleshed that out for the population health
record, because the Better Information for Health that came out of this
committee of the NHII report had those three concentric circles, and a lot of
progress has been made in defining and trying to advance the electronic health
record, certainly a lot of discussion about the personal health record. But
what about the population health record?
So we can send you all a link to that, but it might be something to
integrate into your thinking going forward because it follows very much in that
idea.
DR. KAPLAN: I think that actually is the core of what this IOM report is
about.
MS. GREENBERG: I know they testified to the IOM. We don’t want to replace
the IOM, we don’t want to replace this committee. But I think it was obvious
that there are gaps and that everybody doesn’t have access to the data that
they need, and that things are going on at communities, or community needs — I
would not say that there isn’t a sweet spot here for the committee, but I think
that is a challenge.
In fact what was, I think, surprising to us was that we thought these were
really exemplary communities. We selected them because of their variety, to
some degree, geography and other things, but testimonials from a wide number of
people in the Department and outside of the Department saying, if we were going
to do this, which communities should we start with? And yet, almost to a
community, they were really surprised that we had even found them. They are not
really linked — some are linked together, and some are actually linked
together through things like the Beacon Community program or certainly in
California, the Sonoma thing, Sonoma activities.
But you cannot assume that they are all getting the support that they need,
that they have good ways to communicate with each other, that they are in a
position to learn from each other. Don’t assume that, because even these
exemplary communities, that was not the case.
DR. SUAREZ: What is most fascinating to me about the Health Data Initiative
Forum was — I realize there are three things going on here. There is data that
we know that exists and we use it. There is data that we don’t know exists and
we haven’t yet gotten to it. And then it exists and people were showing now
where to get it. That is part of the liberación or the liberation of
these data from TEPFAR’s(?) perspective. And then there is no data for things
that we do want to know.
I think that is the challenge, I guess, and the balance we have to play,
that sometimes we try to go for data that we don’t think exists, or we don’t
know whether it exists or not, and it does.
Part of the issue, and that was again one last thing about this event, was
there are innovative ways to actually get to the data and use it to generate
information. It was amazing how easily and quickly, with simple applications,
people were able to bring together the whole host of data that exists into
something that is very coherent and tells a story.
So I am thinking that besides the fact that the reality is there are places
where there is no data and that we want to know things and there is no data for
those, I think it is important to recognize that there is also data that is out
there that we need to make sure that people are able to access, to get to and
use.
DR. KAPLAN: I just want to return to something that Charles Friedman said
this morning. He was referring to sushi-grade(?) data. I do think that some of
those efforts you’ve got to be careful about.
Again, if you take the big issues, so if you look at the big health
departments — L.A. or Boston or New York — they’re fine. But if you go out
and talk to public health directors in smaller areas, they tell you that it’s
like flying the airplane with no instruments, that they don’t know the number
of people who are overweight in their communities, and so forth.
What is happened is that these data-liberation efforts have come forward,
and they say, Oh well, you can just go to our Web site and it will give you
estimates for your county. But those estimates really are not — what they do
is they take national data and then they take the percentage by state and the
percentage by county, and you’ve got an estimate, but it is not the data that
you need for planning.
So standards really are important, and common data elements are important.
DR. GREEN: Let me make a kind of asking-and-answering question here about
why, if so, would now be a good time for the Populations and Privacy and maybe
Quality committees to go to work together on the community as a health (word
garbled) system?
Let me try a number of arguments(?). Number one, if it has been studied and
we already know this, why the hell isn’t it happening?
(Laughter)
My answer is that there is something missing.
Secondly, the sciences actually matured during the 20th century.
We actually learned a great deal in the 20th century.
Third, for the first time in human history, there is a technology sufficient
to do what we’re talking about, do these data linkages, use them in different
ways, use data in different ways, fold them, unfold them, refold them, unrefold
them, go back in and back and forth. We now know that that is plausible. It is
plausible.
Then, in a sense, we also know that our health status sucks.
MS. GREENBERG: That’s why we love Larry.
DR. GREEN: We also know that our health care delivery system is a bastion of
mediocrity. We also know that our public health system is actually weak. We
know our primary care system has almost been dissembled. We know that Curt(?)
was wrong; you cannot separate mind and body, and public health and medical
practice were not always separated. It was an accident at the beginning of the
20th century.
So what we’ve got, we don’t like. It’s not working except in one way. It is
generating expenditures like nothing else and it is recession-proof. So we
spend and we spend and we spend.
Right now is a really good time for us to do something. There’s a party
that’s over. I don’t hear any dissent among our group that it is relevant. We
still don’t quite agree about the exact target, but we are getting close to
getting this targeted. But it is timely because there is genuine opportunity on
the table that is unseized and has not used the knowledge that we already have.
To some extent there is an engineering opportunity here, and it is not the
IOM’s job to do the re engineering. The IOM is the nation’s adviser about
health policy.
NCVHS, by charge, the Department of Health and Human Services’ goals as
articulated, and what we heard in our last two hearings between privacy and
population suggests that there is a desire to go forward together, public and
private sector, to do whatever it takes to start taking advantage of data to
measure things so that we can actually go into action to improve the health of
communities at the local level.
It is trying to happen. It turns out to be complicated. I am going to hush,
Sallie, I promise. But where I am headed with this is I am beginning to wonder,
particularly given that we’ve got such great new members sitting here at the
table, and you’ve got to rapidly assimilate and get oriented, I am wondering if
one of our next steps is not something like a workshop to actually drill down
into the issues that you folks are raising and for us to see if we can sort of
give ourselves a map about what it is we want to ask and answer and test it
against the criteria. Does it fit into our charter? Do we have the reach and
the scope and the staff to do it and all that sort of stuff? But to a
straight-faced test about it.
That might be an important next step, is not so much inviting a bunch of
other people to tell us more. We may need to talk to ourselves for a while
rather than having 25 minutes for a discussion here.
MS. GREENBERG: Let me say something about that, because Walter and I were
talking earlier in the day. We have on occasion had some retreats, as it were,
which do that type of thing. We had a full committee retreat a few years ago,
and we talked about possibly doing another one but waiting until we got the new
members.
I could see possibly, instead of trying to do the whole committee, or the
whole agenda for the committee, having more of a retreat-like meeting for just
what you’ve said and then maybe have a second one that would be more
standards-oriented or something, rather than trying to do it all in one.
Anyway, I think that would fit in with what you are saying.
DR. MIDDLETON: Larry, provocative as always, and you get me going.
One of the things I think the committee might want to take up as a whole is
what is the nature of our influence going forward, and who is listening? We
have a good idea about what to say, I think, often, and we arrive at the usual
things. But I worry sometimes. It feels a little bit like tilting against the
windmill. Are we ready now, or is it appropriate at some level — and the words
may be stronger than they need to be — but does the NCVHS need to take on a
more militant role somehow in the health care dialogue, in the health care
debate in this country?
We have not heretofore, but maybe it is actually at that point where there
is an opportunity there to do it in the right way, in a sensible and of course
meaningful way. But I worry sometimes that we — it’s just the
tilting-against-windmills feeling.
DR. FRANCIS: I am scared that we were supposed to end at 4 o’clock, but so
Quality can have time —
MS. GREENBERG: It is up to Blackford whether he will cede 10 minutes to the
lady from Utah.
MS. KLOSS: Just to follow on with this discussion, it seems to me that maybe
not militancy but maybe cooptation or something, looking at other initiatives
that are very high priority for the Department that also fit with improving the
population data, whether those are idealistic initiatives, and I don’t want to
be focused on diseases, but it does seem that there may be an opportunity to
leverage this work so that the Department as a whole can move forward more
expeditiously.
DR. HORNBROOK: One of the things to think about is the fact that you can
take a specific health problem, and let’s just take obesity. Of course, you
look from that the health risks forward. You see heart disease, elevated
lipids, diabetes, cancer, falls, et cetera, et cetera, and you see bariatric
surgery, you see ALL — aspirin, lisinopril, lovastatin — you see medical
interventions, both expensive and cheap.
You look backwards and see, well, how did that person get there? And you see
improper diets or just inappropriate diets, less exercise, genetics, and
perhaps even that Mom was diabetic when she was pregnant; she had gestational
diabetes and had a large baby, which set the baby for a high weight that the
baby never got rid of.
So to me, when you look at that, you are looking at a societal, lifetime,
multidimensional strategy for dealing with the fact that this country has
obesity and tobacco as the two major health problems, that prevent a lot of
things that we spend a lot of money on.
There are a lot of things you can do earlier that are a lot less expensive
than the things that we have to do later, like give people new hearts and vein
implants and stents and stuff.
So in some sense, this is the true public health perspective, where you take
the lifespan vision of a chronic health problem that leads to lots and lots of
expenses and say, We’ve got to move those expenses from the high-peak areas
back to the areas where they could have been prevented, somehow, some way —
and it is an intergenerational transfer, I know, and of course you aren’t going
to certainly take away money that will keep somebody alive for a few more days
or weeks.
But in any case, that is to me what this committee needs to do on some of
the most important problems.
DR. SUAREZ: Leslie, just one more point.
DR. FRANCIS: They are still running the meeting.
DR. SUAREZ: Oh. It’s inspiring to hear all these thoughts. I wanted to make
a comment because I think it will be worth exploring.
We said in the PCAST letter that we like bold moves, weaving some of the
thoughts that, Larry, you make, and Blackford, your —
MS. GREENBERG: We said bold but not militant.
DR. SUAREZ: I was going to suggest we might want it stronger. I think we
have an opportunity to be bold, talk about bold and talk about transformative,
and when we think about PCAST and we think about all of the progress that has
been done in the industry, and we were afraid that that was going to stop or
delay or create a disruption, a significant disruption, in the progress we’ve
made, it feels, based on your assessment, Larry, that in the public health and
in the population health and community health area we need a true, bold, and
transformative move.
So I was thinking was going even beyond being militant —
MS. GREENBERG: Oh, boy!
DR. SUAREZ: I was going to say we should honestly look at this and write, I
was going to say a manifesto.
(Laughter)
PARTICIPANT: Viva la revolución!
DR. SUAREZ: We the people.
MS. GREENBERG: I was in Russian studies before I got into health statistics.
DR. SUAREZ: But if we want someone to pay attention, because that is true
that that has been the unmitigated feeling of we write letters, and we
sometimes see a lot of action. We are fortunate in my subcommittee that the
letters we write have a very concrete and defined audience and they tend to be
followed quite well.
But in some other areas, we feel like we have made a lot of comments and
ideas and recommendations, but they don’t go anywhere or at least don’t get the
attention that they might need.
So perhaps what we need is that, is a completely new, transformative kind of
document, a position paper, call it whatever — manifesto might be a strong
word — but that grabs the attention of everyone from Congress to, of course,
the secretary but also public health and the rest of the communities, I mean
even in Kaiser and all the other systems. As soon as we see something like that
that we see is very valuable because it’s a community-driven interest, it is
going to be hard not to follow and support.
That is the kind of bold, transformative document, I guess, or idea or
manifest that we would need in order to really gain the attention and move us
to the vision that we really see and we really have.
DR. FRANCIS: I want to give you two final snapshots from June 9. Tim
O’Reilly, in moderating the last session, said, “All right, privacy is the
bad guy; privacy is the barrier.” The winner of the grand prize for the
best act was PatientsLikeMe —
MS. GREENBERG: Throwing privacy out the window.
DR. FRANCIS: — which explicitly has no — I mean it is for people who are
willing to give up and be publicly known, which is fine, but it’s not
everybody.
My bold piece on this would be to say I am going to try as the next step to
say we should have a call within a month in which what we do is we talk about
what are the perceived reasons that privacy is a barrier. Is there anything
there? Is it fine to have the baby go down the drain? Then look at what are
some of the strategies that we might come up with a recommended document.
My little initial suggestion for that was use cases, but that may not be
bold enough.
MS. GREENBERG: Can I just add to that? I think you are going somewhere
definitely, but obviously this needs more talk. But I would say that I think we
should continue working. I mean I would hope that these two subcommittees at a
minimum, and possibly Quality and Standards too, would continue working
together, because I think you have pieces of the elephant, et cetera.
But I think one thing, and bringing in from June 9, that this committee can
look a little bit more directly at — we know that there are two other advisory
committees who are also working on standards and policy for health IT, the new
FACAs under the ACA — is with all of this, what are the potential roles for
electronic health records? That is the big-ticket item right now in the
Department and in health IT policy.
One of the things that we heard in the community health was actually a
person from community health data, Pat Remington, saying we are not going to
need surveys anymore, we are not going to need behavior risk factors survey at
all. People don’t have land phones anymore anyway, and all of this.
Some of us are going — and actually, fortunately, the people on the panel
did not agree with him, but he is from public health essentially and he is
saying this, and I can assure you that that is — certainly a lot of other
people are saying that.
But when we asked these communities whether they are doing anything with the
health information exchanges, what they thought they could do with electronic
health records, for the most part it was like zero. That isn’t good either
because there is potential there, but it gets into the privacy issues, it gets
into the convenient sample versus statistical, it gets to the question of at
what level are data actionable and what kinds of data are actionable. All of
these issues, even this thing that has just come out about ranking all the
counties and saying how 80 percent of them are worse than Europe, this is an
interesting analysis, and I am sure it will get a lot of play, but what, well,
yeah, so? Why? What can be done?
So I think that this is the committee where those kinds of hard questions
and thinking can take place and bring in others to take place. This isn’t going
to happen anywhere else that I see because just plowing ahead with these, all
of which are important — electronic health records are important. I would
maintain that surveys, maybe not the same surveys or different types of
surveys, are important. But the idea that everyone is just going to report
information on the Web and so you won’t need phone surveys, well, I don’t know.
So I do encourage you — that I think is an area that you can really
contribute to. You can work with the Board of Scientific Counselors, the NCHS
Board of Scientific Counselors on that. You can work with other groups.
But I wanted to throw that in.
PARTICIPANT: So we’ve now moved into the Quality committee meeting.
DR. FRANCIS: Yes, we are on quality.
PARTICIPANT: Do you want to formally break and reconvene?
MS. GREENBERG: Can we take a 5-minute break?
DR. GREEN: Can I wrap this up with some very instrumental stuff? What we are
going to do next — here is a straw man proposal. Number one, Susan Kanaan’s
summary of the two workshops that we did this last year, the co-chairs of
Privacy and Populations will work with Marjorie to figure out what sort of
document or to what use we want to put that summary, and we will create
something out of that.
Secondly is we want to start scheduling a workshop for members of the NCVHS
to help define the questions and issues that we want to work on, at least for
the Population and Privacy committees.
Number three, we need to reconsider our committee structure to decide how to
organize ourselves to align with the functions that we decide we want to pursue
there.
It’s dangerously close to becoming a committee of the whole because you’ve
only said four times in the last hour and a half about, are we in standards,
are we in quality? That sort of stuff. It is just definitely cross-cutting.
I think a forcing that is absolutely critical is we need to solve this
problem about senior staff for the Populations committee for this work, who is
going to be there.
DR. MIDDLETON: Larry, may I add to your list? It came up earlier, and maybe
it doesn’t resonate with anyone else, but I think even at the fundamental
charter level, we’ve been talking about data for 60 years. Data becomes
information, becomes knowledge. Somehow I think we’ve got to reexamine the
scope. Who else is going to do that?
DR. GREEN: That is exactly the sort of thing that I think we formulate a
workshop to drill down on so that we really refine our target for work for
several months, not just for a meeting but for several months. It is really
setting this out.
Are you okay with that, Blackford?
DR. MIDDLETON: Oh, yes.
MS. GREENBERG: Such a workshop would by definition because this is a FACA,
but it would be open to the public. But you also can invite some selected
non-members to participate in a one-time discussion like that. So you can be
thinking about that too, if there are a few people you would like to do that.
DR. FRANCIS: It would be the workgroup model. So there will be a privacy
call. We will schedule it for people who are identified as and others who are
interested to start talking about some planning for the workshop.
DR. HORNBROOK: Marjorie, has the committee ever looked at — we have been
talking about personal health data all the time here as far as I can see — has
anybody ever looked at going back up to — we even have pharmacy data, but I
could also have the shipment of drugs to the pharmacies by neighborhood. I
could have shipment of food to Safeway.
MS. GREENBERG: I think any health-related data are on the table.
DR. HORNBROOK: So it seems like we could do micro —
MS. GREENBERG: I think it gets to what Len was saying about linking them,
all sorts of creative data initiatives.
DR. FRANCIS: A 3-minute break. We used the first 2 minutes.
(Whereupon, the subcommittee adjourned at 4:10 p.m.)