[This Transcript is Unedited]
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TABLE OF CONTENTS
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 reemployment 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 reengineering. 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.)