[This Transcript is Unedited]
Department of Health and Human Services
National Committee on Vital and Health Statistics
Subcommittee on Population Health Strategic Session
November 15, 2012
National Center for Health Statistics
3311 Toledo Road
Hyattsville, MD 20782
CASET Associates, Ltd.
Fairfax, Virginia 22030
P R O C E E D I N G S
Agenda Item: Welcome and Introductions
DR. COHEN: Let’s go around the table and introduce ourselves and then on the phone. I am Bruce Cohen and I am from the Massachusetts Department of Public Health. I am a member of the full committee and co-chair of the Population Subcommittee. I have no conflicts.
MS. MILAM: I am Sallie Milam. I am with the West Virginia Health Care Authority, member of the full committee, no conflicts, co-chair of Population Health and member of the Privacy, Confidentiality, and Security.
MS. JOHN-PAUL: Hello. I am Tamara John-Paul and I am a member of the Population and Health Subcommittee. I have been at CDC for about four months now. Before here, I was at Johns Hopkins Applied Physics Lab. I was research staff there and I had a joint appointment in the Computer Science Department there. My background is in computer science and I specialize in mobile health applications.
DR. COHEN: You will bring a really nice perspective.
MS. KANAAN: I am Susan Kanaan. I have a long history of working as a writer for the committee. I have been involved in a lot of the past reports and other projects.
DR. CORNELIUS: I am Llewellyn Cornelius. My nickname is Lee Cornelius. I am a professor at the University of Maryland’s School of Social Work. I have no conflicts. I am a member of the full committee and on the Subcommittee for Population Health.
MS. JACKSON: Debbie Jackson, committee staff. I have been with NCHS a little over 10 years, maybe 12 years and with the federal government about 20 years. I am a native of Chicago. I work with the Accreditation Council for Graduate Medical Education and part of the AMA and in Chicago, osteopathic for a bit. My background is a Masters in English, an Illinois girl in Champaign.
MS. WEBSTER: I am Kassi Webster. I am new to the committee as staff. I am here at NCHS and the Office of Planning, Budget and Legislation.
DR. COHEN: On the phone?
DR. FRANCIS: I am Leslie Francis. I am a member of the full committee. I am a member of the Population Subcommittee and no conflicts.
DR. MAYS: Vickie Mays. I am a professor at University of California, Los Angeles. I am a clinical psychologist by training and I run a center on minority health disparities, in which we use technology to deliver health interventions. I am a member of the full committee, Subcommittee on Populations and Privacy, and I have no conflicts.
DR. COOPER: I am Leslie Cooper, member of the subcommittee. I have no conflicts. I am active duty in United States Public Health Service. I am a nurse epidemiologist, the public health service over 29 years. My primary research area includes both population-based research as well as social behavior and animal research and a strong community-based participatory research advocate and scientist.
DR. COHEN: Great. Welcome all. I am really happy that this is a small group. That means we have to accomplish a lot. Leslies and Vickie, you got the Power Points that were sent?
DR. COHEN: We have the agenda. Feel free to keep this as an informal discussion as possible. The goal here today, I think, is really to help us focus on what the Populations Subcommittee work plan is going to be and begin trying to specify what our priorities are and what the tasks ahead of us are in the context the full committee trying to converge on a variety of things.
With that introduction, I will turn it over to my co-chair, Sallie, to lead us in the beginning of the discussion.
MS. MILAM: I would like to refer us to the Power Point slide. It has at the top community as a learning health system. It has five blue boxes under it just as a frame for the discussion.
Yesterday it became really clear that we have been a little schizophrenic and I think maybe everybody is and maybe we will continue to be for a while because we are working as a committee of the whole, but we also are working as a subcommittee. We need to together figure out what that means.
We thought we would throw down on paper what we think we heard yesterday just as a frame to help shape the discussion and as we said yesterday offer it up to everybody, our subcommittee as well as used by other subcommittees so that we have something to look at to see as a whole how do we fit.
What we did was for population health as well as everybody else just tries to throw down a few ideas or areas of focus for each of the groups as a starting point. But as Bruce said, our focus today is going to be on the second column, population health. Just through the areas that we thought we would talk about.
We heard from probably the data work group and — data and standards, I think, gave their presentations the second day after we did the schematic. I am going to add a little bit to that that I thought was interesting.
When Justine reported out on the data work group, she was talking about their identified need for various types of support in using the different kinds of health data available. She identified definitions, a taxonomy, hierarchy, guides, and a learning center. That sort of fits into what we have heard that some of the communities might need in terms of metrics and other supports for using community data as well as the data itself. That was some interesting overlap that occurred on the second day.
DR. COHEN: There were a couple people here and on the phone who were at the data work group. It was a very interesting discussion I thought. Josh Rosenthal presented the notion of putting HHS data out and existing free web browser systems that more people used and currently use HHS websites that have data. It was a very interesting conversation about how we make sure the data released meets all the federal standards while truly trying to liberate it. There seems like there are potentially low cost options to free these data and make them available.
I think the distinction for me was — I work for a government and we try to develop our products, but the reality of it is we need to go where the people are. And if people are using mHealth applications or people are googling and get information that way, we need to think in terms of really reaching the community providing them data where they are. I think he really helped me focus on that as one of our underlying goals.
Anybody else want to comment who was at the meeting yesterday, the data work group meeting about the implications and the potential connection? I am primarily interested in the implications of what that group is doing and the connections they can have with what our work will be.
DR. MAYS: Bruce, this is Vickie.
DR. COHEN: Yes.
DR. MAYS: One of the things and I kind of commented near the end and then talked to Justine a little bit afterwards. When we started talking about particularly the population level aspect of this, I thought the issue of also making sure that the SMS level technology, using mobile phones, things like that should also be thought about.
I gave her an example where region 9 working with the Office of Minority Health we have a project underway in which we are talking with Walmart because Walmart has video screens. We are trying to develop with them some health messaging. Some of that will be in terms of giving them facts and data and then driving them from those little spots to going to some of these other places to look further at data.
We may want to think not about just the whole survey being put up, but also — I do not know if this is too much in the weeds, but also whether or not for population health we want to think about reaching those populations by also thinking about messaging that drives them to the data.
DR. COHEN: Great. I think that is really helpful. We need to include mHealth in our discussions of whatever our work is in terms of population health or at least make sure whatever we do is compatible with mHealth developments that the data work group might proceed to do.
DR. FRANCIS: This is Leslie Francis. Just one other observation, which is I think that there is going to be some considerable amount of test driving to see what the implications are of taking various kinds of data and making it available in different sorts of formats. I think there is general agreement that it is a great thing to do, but it is not entirely clear whether there are new risks. There was some discussion about it at the end. I think exactly what is going to happen is an open question. It is clear things are going to go forward, but they are going to go forward probably with testing.
DR. COHEN: As we think, I think, strategically about what we do if we do have hearings where we — well, we will have hearings where we hear from communities and get community input. It would be wonderful to have our discussions informed by their perspectives of the issues around data access and making sure that they are comfortable with the level of data release.
I am sorry. I just broke in talking about the data work group.
MS. MILAM: A vital point. Thank you.
DR. COHEN: There was one other issue that came up that I think we need to keep in mind for our Populations Subcommittee work. It is essentially the definition of community. Our focus has been on geographic definitions. We were talking in the cab right over, there is no need to limit us at this point for focusing on community defined by geography.
I think I would like to see our work move forward and however we end up focusing on data gaps, data issues, to also focus on affinity communities, whether they are defined by socioeconomic status, ethnicity, or age or other kinds of dimensions that are important for people connecting with others.
DR. COOPER: This is Leslie Cooper. Whatever we do, we really need to operationalize it in terms of how we are defining community because there are so many different definitions that are out there. It will be important so that we will know that we have addressed the question that has been asked. I am very supportive of the issue that whatever we are going to do if we are collecting data from the community releasing their information, we need to have that feedback with that community to be sure that they are comfortable and they understand what we are going to do with this information before we release it and let them be an active part of the team as we move forward.
DR. FRANCIS: This is the other Leslie. A kind of variation on that theme. Is it possible to think that different sorts of data releases, data uses, and so on might vary with different types of communities. We really want to be clear what kind of community we are talking about, but we might not want to limit ourselves to one particular type of community.
DR. CORNELIUS: In a technology era, we also want to be sensitive to this notion of when we talk about affinity groups the idea of a virtual community because quite a few of us are using things like Facebook and social media to build communication bridges. We learn both from this election and the 2008 election that it has been very effective to use email and other forms of communication to share information. In other words, for example, I am a native New Yorker, but I live in Maryland and I am from St. Croix and I can represent — my family is from St. Croix and I can represent all three groups even though I live in Odenton. The question becomes which community am I representing and it depends upon what bridges I have built within those populations and if I am having true transparency, even if I am virtual.
DR. COOPER: The other thing I would like to hopefully keep us mindful of is that sometimes we can represent a community and sometimes people assume we can represent a community because of our physical appearance, but it may be that physical appearance alone is not enough to put you in line with whatever that targeted group is that we are trying to focus on. I hope we are very clear about what is the question we are trying to address and then what is the appropriate target and what types of information keeping in mind that as we look at a time of technology and though it moves fast and it is quick and accessible, some communities do not have that technology that is so much taken for granted by many of us.
DR. COHEN: Leslie, I also want to build on a comment that you made. I think it is important to distinguish when we look at data gaps and when we talk to communities and when we try to come up with our recommendations about what needs to be done to provide community information. To me there is a distinction between primary data collected from a community or by a community versus using data collected about a community. Those are really two parallel streams, but they have very different implications for stewardship and for a variety of kinds of parameters around making recommendations. We need to be sensitive to each of those parallel data streams.
DR. COOPER: I agree. Thank you very much. This is Leslie C.
DR. CORNELIUS: This is Lee again. I think one of our subtleties here is to be mindful that in our conversations with regards to the federal role as it relates to the community as opposed to my being out in the West Baltimore and being a community member thinking someone in West Baltimore speaking up to the federal or the state government. Here there is — especially as you deal with data, on one side we are dealing with federal surveys, administrative data, funded projects, and the voice across all the HHS agencies. That is a different kind of dance than what I would have when I walk out the building from my hat sitting on this committee.
MS. MILAM: I made a note on my agenda just under where we have identifying gaps in data and metrics and meaningful use. I have added define community. I think that discussion is important. That needs to find a home in the work plan too.
Just to wrap up this discussion, yesterday during Walter’s presentation on standards he offered us some opportunities to work with them in defining standards for the messaging component as well as the data itself. I imagine Walter will probably add a few things to the column we started for him on standards.
DR. COHEN: To summarize, the purpose of this first diagram that Sallie has been describing is really to provide us with context for what we are going to be doing. The schizophrenia that has been present the last several days about working having us each subgroup have its task versus working as a whole will continue, but this is kind of a framework that will allow us to do our work and offer the opportunity to view the community as a learning system as an underlying theme for the work of all of the subcommittees as well as for cross pollination of issues across the subcommittees.
MS. JACKSON: I appreciate that lens because it helps set the tone of really what you are looking at. I did hear a sense of like you said schizophrenia because the silos term came up in the discussion and then we are not in silos, we are not in silos. I wanted to make sure to get the quality background materials to you. I printed some off, but they were not in the red the way Paul had submitted them originally. As far as your background material, I have killed a couple of trees just so you could have this correctly.
DR. COHEN: What Debbie is passing out for those folks on the phone is a summary of the recent activities and future directions for the Quality Subcommittee that we should think about. I also sit on that subcommittee. I have not really had a chance to talk with Paul. But the latest focus of that subcommittee is on measures that matter, matter to individuals around how to choose a health plan, how to choose health care providers, and how to interact with their primary care physician or all health folks to get the information they need. I see this as really intimately connected to our community focus on measures that matter for communities. The whole might be greater than the sum of the individual parts, but the individual parts around measures that matter in terms of quality can really integrated into the kinds of things we hope to do.
PARTICIPANT: Debbie, can you email that to us on the phone?
MS. JACKSON: It is on the SharePoint site under —
PARTICIPANT: Never mind. We cannot get into SharePoint.
MS. JACKSON: I will be glad to send that. After this meeting, I will send any other background materials via regular email.
DR. COHEN: We are not going to focus on it, but I think we should all take a look at it. Again, our focus today is really thinking about the Population Health Committee. I think we should also be mindful of how our work connects to the work of the other folks on the committee.
MS. MILAM: Taking us a step further, we have a slide called integrated vision for community’s learning health system. It is a lot like the slide we just talked about, but it gives us another dimension to help us think about this. We have another dimension for a federal role and then the Folsom theme. Both tend to guide our work. We are a federal advisory committee. Our recommendations need to be focused on a federal role. And then we have been using Folsom as not only background material, but I would say a lens.
DR. MAYS: Sallie, this is Vickie. Can I just comment about the Folsom theme and kind of caution us a bit? Folsom is really the family medicine perspective. It does to some extent — what do I want to say? It is kind of like out there in the world there is a difference for some people between family medicine and general internal medicine and there are all these little fights and things like that. I would just be careful about making it so prominent and trying to figure out another way to label it because there are other reports coming out beside Folsom like Harvard has a big one under Julio Frenk’s leadership that is about the transformation of medicine. There is some competition. I am just afraid we may turn some people off or be accused of not being as broad as we may need to be by just taking the Folsom Report because it really is for family medicine.
MS. MILAM: Vickie, let me ask you something and ask everybody. One of the take aways from Folsom for me at a higher level is around the convergence theme. If we substituted a Folsom theme for a convergence theme, would that be a good dimension or is that helpful at all?
DR. MAYS: I think it is very helpful because I think that is what the new medical education training, et cetera is about and it is reflective of several of the different disciplines.
DR. COHEN: I think we need to define what we mean by convergence. Here, I think we are talking about the interface between the delivery of medical care and quality of life in our communities. Is that what you are talking about? That is the way I would like to define it. Vickie, is that what you are talking about?
DR. MAYS: I was thinking about convergence as at least the reports that I have read in terms of medical education, medical training is individuals really doing whole systems and thinking about the patient as not just this disease, but prevention, well-being. That was kind of what I was thinking about. I think we are in the same ballpark to some extent.
DR. COHEN: Convergence of what then?
DR. MAYS: The convergence is bringing together different aspects to treat a person in ways in which it really reflects the life they live. The patient comes in. Rather than just worrying about their disease, you also worry about their well-being. You worry about them as a member of a family. You worry about them in terms of the whole system.
DR. COHEN: Great. That really helps me. If you have other writings or references in this area, I think it —
DR. MAYS: I will send some.
DR. COHEN: This is a general call for everybody in this work group. When you come across anything that you think would be of interest to us, please email or post it on SharePoint or both.
MS. KANAAN: And if you email, please include Susan Kanaan on the list. I sometimes get left off.
MS. JACKSON: If there are other references like the Folsom because Folsom was an anchor for me, not that I was going deep into the context of its family practice, but it just kind of an overarching especially in the time it was written and now it is revisited of the whole systems approach. You mentioned something at Harvard and other things you are familiar with. When you send something, if you could let us know that that is in the context of other Folsom-like areas, that would be great.
PARTICIPANT: One of the phrases that pops out from the Folsom — I think it was in both the original and the revisited one is the idea of a community health physician, community doctor as a public health professional or community health professional. That is one particular kind of convergence too. Of course, what they are trying to — I think the family medicine people are trying to facilitate family physicians thinking in terms of community health, which is certainly our mission as well from a different angle. I think that is a piece of it.
DR. COHEN: The piece that I am actually interested in exploring around this convergence of treating the whole individual, not just the particular disease or the integration of medical care and a broader concept of health is the emergence of community health workers as playing a key role in promoting individual and community health. I know that this whether it is more active case managers or community health workers or a whole other level of interaction. I think there is a lot of resonance in expanding this role to improve individual and family health. I would love for us at some point to get into that issue because I think it has a lot of future potential.
MS. MILAM: Another way to think about convergence too is this diagram. For people in the room, I am holding it on my laptop. For those on the phone, it is the three interlocking circles.
DR. COHEN: The three interlocking circles — if you have the PowerPoint presentation that I gave on Tuesday, it is one of the slides and it is also in the community’s learning — is it in the community’s learning system?
PARTICIPANT: I think it is slide 8.
DR. COHEN: Great.
MS. MILAM: You have the health care provider dimension, the personal health dimension, and the population health dimension. As we think about our integrative work with other subcommittees, this gives us a visual representation of the issues identified at that time and where we have overlap. If you look at the overlap for all of the dimensions, you have issues around de-identification, mandatory reporting, community directories, et cetera. This might be a tool that we can revert to when we are looking at how we need to work together across committees. I will throw that out there.
DR. BREEN: This is Nancy. I just have a question. I know Vickie had sent out an IOM report and she suggested it would be a useful framework. I did not get an opportunity to download the PDF to see if there was a graphic there, but I wondered is that pretty consistent with the conceptual convergence we are looking at here or are there major things that are missing or different.
PARTICIPANT: I think that particularly one isn’t as much about convergence as it is about a value system and an approach. It does have some graphics in it that might be useful to us as we think about how do we do the metrics of what we are talking about.
PARTICIPANT: — different, but consistent and maybe it is something we could integrate.
PARTICIPANT: Yes. I think there are pieces of it that we may want to integrate. Sallie, is that your sense from what you have seen of it so far?
MS. MILAM: I think so. And I think it can help us. What we want to do after this discussion is to walk through a literature review, but before we get into discussion is to talk about our vision for what we see as the end goal and work back. I think that value system needs to find a home and that end goal or part of the picture. The message is that each community has different values and those values shape what is important to the community. How does that then influence the metrics that are used or the display of the data or anything else for the specific community? Susan, did you want to react too?
MS. KANAAN: I wanted to add another piece since we are talking about the different components that are converging. I think it often gets lost. I think it is overlooked in the Folsom Report and the revisited version and not so much represented also in this three-dimensional although it can be added.
When I think about community, I think it is really important not to frame the actors only in terms of various professionals and thinking about a convergence among different professional perspectives. When I think about empowering communities, I like to think about empowering individuals, not just in terms of their own health, but in terms of their role as creators, co-creators of healthy communities themselves. The personal health dimension in the original NCVHS seminal work on the NHII looked at individuals very much in terms of their personal health care, their role in their families. I think we all know from our involvement in our communities that individuals even if they do not carry a professional label, they are involved in one way or another in improving their communities. Sometimes that is directly related to health and sometimes it is indirectly related to health. I would like to see when we are thinking about convergence. I am hoping that can be reflected as well.
DR. BREEN: This is Nancy. I would like to build on that. I think that one of the lessons we learned with the teaching communities and are seeing how people are using data is that they are using data, and this is where I think our committee comes in, to empower individuals to coalesce around key issues to identify and then coalesce around these key issues. And the data comes into help people identify what the key issues are. They may have to choose among multiple key issues, but at least they will know what is happening in their community. It is not just an individual perception, but it creates a collective perception and allows people to work together to organize and to have more power in their communities through this organization rather than just working as individuals. I just wanted to add that second piece that I think is important in terms of how we see the community as a learning system to improve public health.
DR. CORNELIUS: As I am listening to this discussion and I have all the charts out in front of me, I am kind of sorting through layers of stuff so to speak. I will see if I can peel through some of this. On one piece, in essence what appears to be the driver of this is the data information survey, what have you, behind what we are trying to measure. That is one hat. And then there is another bigger hat that in our conversations where we are talking either about individuals or communities from a behavioral point of view or life force. As I hear those conversations, I am trying to really keep track of what are the levers we are trying to push in each direction and how do they overlap.
The other comment is even as I think about the measures, I am sorting two things, individuals as representatives of communities and the data that speaks to that. And then the other piece is about measures of community identification. We talk about environmental scans, what have you. We have to really be sensitive when we are thinking about our measures that there is some level of research that focuses on the community context because a lot of our data collection systems may focus on individual payers, families, and identifiers along that and that is different than driving through communities and watching like Hurricane Sandy and its effect on the New York Metropolitan area.
I do not want us to lose the measurement ability as we play out this dance down the road that there may be a need to support the notion of communities as identify a system in and of themselves, and what kind of data that is out there that allows us to do that measurement.
DR. COHEN: Can you give me some examples of community measures that are more than the sum of aggregated individual measures?
DR. CORNELIUS: I keep thinking as opposed to geographic information systems where we pulled data. I keep thinking about when cultural anthropologists do social community histories of like Chicago. I lived in Chicago for six years. It is a very well identified, multi-ethnic city. You can actually plot a map of all the sub communities that have both ethnic identification and cultural identification and they are very well defined for decades. That is a life force. That is above just counting the number of people in a Census tract. What is peculiar about Chicago you can go — grid system, square miles. You can cross a street and know that you are literally like in Greektown or Pilsen. But our challenge becomes how do you capture that? In Chicago, unless you understand that that is the way the city is, you kind of miscommunicate and you do not build bridges.
Believe it or not that is one of the — we talked about that sociological point of view. But the hardest thing for us to do is to acknowledge that from a measurement perspective. Yet, from the community’s point of view, they identify where they are.
MS. MILAM: You are right, Lee. I am adding these notes under community. I think we need to define our scope because this is huge. We are going to have to figure out will it be — and maybe we stage it. But right now, we have a huge end product. We even want to define the data element and the community. We are going to have to figure out maybe which to go with first.
DR. CORNELIUS: And we want to be honest about why we choose to take on this piece or that piece and so on so that we are acknowledging to the folk on the other side of the information system that we have the conversation. And we know that out of all the possibilities we are deliberately focusing on such and such for this reason or that reason.
PARTICIPANT: And we need to come up with a realistic timeline.
DR. CORNELIUS: Yesterday.
MS. MILAM: If one of the staff can help us keep a parking lot of assumptions as we go through that is going to be really important at the end when we define our limitations.
PARTICIPANT: We call it a bike rack now.
MS. MILAM: Is this a good time to hear about the literature review or do we need to —
PARTICIPANT: Sallie, did you hear an assumption. You said you wanted a parking lot of assumptions. Was there an assumption that you just heard come out of that conversation that should be put in the lot or put in the bike lane for the bike ride?
DR. CORNELIUS: Community as an identifier would be an assumption.
MS. MILAM: And when we decide on what it means, I think we need to delineate what we have excluded.
PARTICIPANT: Isn’t this also what Joshua is calling the taxonomy in his rubric? How are we defining our terms?
MS. MILAM: We will start our taxonomy.
PARTICIPANT: Is this similar — the community as an identifier. This is a big issue. Geographic information is how you define a community. Because we have it, we tend to use Census blocks or Census tracts even though we know that they may be a bit arbitrary. But those are defined by communities or sometimes super communities. They may not always hit it right. This is like something geographers and people in that field have been working on for years. I am just wondering if it is something —
DR. CORNELIUS: And communities on static, which is why we have to really nail this down.
MS. MILAM: Then if we are also talking about the virtual communities, I think when we know what we are talking about and once we have talked about, we need to just be clear how we anticipate the model to be applied and what we think it could be applied well to and what we determine was beyond our scope and maybe for later work.
PARTICIPANT: It is an important issue. We may not be able to tackle it, but we want it there for the record. Is that the thinking?
MS. MILAM: Yes.
DR. COHEN: I think one of our first tasks in addition to figuring out our assumptions are sort of doing an environmental scan of where data gaps are. I know in the work that I do the level that folks like information at is the neighborhood level if they have clearly identified neighborhoods because it is something individuals and communities relate to. It is not always possible. First, people do not agree on the neighborhood definitions. We do not collect all of our data at the neighborhood level. And the number of events might be relatively sparse, but it is a concept that people understand and appreciate and feel is actionable. That is an example of how we talk about what data are available, what data are not available or we should push our systems to provide data at that level.
MS. MILAM: My mind is jumping ahead. I am thinking about the mobile apps and thinking about the website People Like Me, a virtual community. I am wondering with your virtual communities if they already have indicators that are well built. I know People Like Me does.
We just had Virginia join us. We have folks on the phone, Virginia.
DR. CAIN: Virginia Cain from NCHS.
MS. MILAM: Welcome.
DR. CAIN: Thank you.
MS. MILAM: And on the phone, we have Leslie Cooper and Leslie Francis and Vickie Mays and Nancy Breen. Is that it? Okay.
DR. COHEN: Any other just general comments of the next —
PARTICIPANT: Can I ask something? I am trying to wrack my brain — kind of this notion of this metric. It is like what Nancy Breen is saying. It is overwhelming in terms of trying to even get it right. I am trying to figure out — we would use it as what? My head is not quite wrapped around it.
DR. COHEN: I do not think we are there yet.
PARTICIPANT: Okay. I thought you all had a clarity that I did not have.
MS. MILAM: We are still in background.
DR. CORNELIUS: We realize how big the problem is.
DR. COHEN: I would say we are very in generative mode. We have not gone to strategic mode yet. Everyone should feel free to essentially help provide us their worldview before we get to trying to specify exactly what it is we are going to do.
DR. BREEN: Nancy Breen again. I was just taking a few notes on this parking lot of assumptions. The first one I caught was this community as an identifier. It just struck me that probably the best person because she is so good at it would be Susan to take notes on this. I just wanted to ask if that was okay with the group and okay with Susan if she were to be the official recorder on that.
MS. KANAAN: On the assumptions, you mean?
DR. BREEN: Yes.
MS. JACKSON: We have a lead staff here. I do not know if you were on the call, Nancy. Kassi out of the Office of the Director is our lead staff of populations. And Susan is definitely providing input on communities.
MS. KANAAN: I am also taking notes.
DR. COHEN: Susan is taking copious notes. I see her fingers racing across the keyboard.
MS. JACKSON: We have it covered.
DR. BREEN: Okay, great.
MS. KANAAN: It is still hard to know. I agree with Vickie. It is hard to know exactly. It is still very amorphous. We do not have an outline form here.
I would like to throw yet one more question on the table. At some point, we need to clarify and pin down what data users we are going to be particularly interested in. This arises all the time when you think about data supply and types of data, data uses. There is still the question. Who is going to be using these data? I think there is a traditional impulse or assumption that it is the professionals. Again, this kind of ties to the point I was making before. The question I would pose is are we also interested in getting data to ordinary citizens in a community for the purpose of — I love the way Nancy said it — to help them coalesce around issues and become actors in their communities. I would like to think that the answer is yet, but then there are all sorts of implications about the type of data and education and so on. At some point, we need to pin that down too.
DR. COHEN: I think that is our primary target audience: community coalitions, NGOs, affinity groups. I do not think the focus of our activity is on providing information for professionals. That is my perspective. How do other people feel?
DR. BREEN: This is Nancy Breen again. I have been working with a California Health Interview Survey for quite a while here at NCI as part of my job. I also do bike activism in my little community of Rockville, Maryland, which is right outside of Washington, DC where I live and work.
It was striking to me as we did the report and watching the California Health Interview Survey, which is called CHIS, and also other independent surveys that have grown up to do similar things to what California’s survey CHIS is doing, which is to collect data on the state that mimics in the sense of it uses the same or similar items as the National Health Interview Survey. It collects data at the county level as well, which is super useful to county public health organizations and to policymakers and to activists.
And just as communities are able to get on board via data for their neighborhood or data for their county or data for their city or their sub-city, often activists, politicians, and the decision makers and the communities can get on board by having these data because they can agree on the facts, which is a huge move forward from the old days when as my friend from New York used to put it men sat around smoking cigars and making decisions. Now we have data and information that people can share and then they can debate about policies and what the next moves should be, but at least they can agree on the issues. They may have to debate over which are the priority issues to address first, but they have information to do that.
I think that one of the things that would be helpful — and the other thing that is really important is there is a tension between these surveys that are indigenous to the communities and states that they are from and the federal government. There needs to be, I think, federal leadership, federal technical assistance, federal funding perhaps. But there needs to be a lot of control at the local level particularly if we agree and it seems like there is agreement on this that we need to be collecting relevant data at the local level and define the local communities in ways that people living there actually define them.
It has to be a partnership. And frankly, our federal system is set up to do this perfectly. It is something that we might want to push the HHS to do or encourage them to do through the National Committee because this administration is very open to data, very much welcomes evidence and wants policy-based evidence.
I think this is very timely, but I think that it is important that all levels of government and communities themselves even if they are not organized into a government be represented for this to happen in a way that really creates the learning communities and really creates the basis for evidence-based public health action.
DR. COHEN: Thank you, Nancy. I really appreciate that comment. I have been involved with our BRFSS program for quite a while and I have seen a movement from CDC to provide states more autonomy and to focus more on sub-state analysis. I think the issue of federal expertise and analytics for not only collecting data at the community level, but making small area estimates in an easy straightforward fashion is something that the federal role really that the federal government should enhance. I think that is certainly potentially an area that we can focus on.
PARTICIPANT: We have a model for that for that with community HANES where we have provided technical expertise to New York City and the State of Wisconsin. I think Oregon may have also local data collection. We have worked with all those communities. There is a model in place for doing it.
DR. COHEN: Florida Health Department actually collects money from the counties on a rotating basis so that they do their BRFSS at the county level on a routine basis. I know most states — Massachusetts — we oversample important geographic areas to come up with sub-state estimates and we are developing synthetic estimates at the community level for smoking prevalences and insurance status for hypertension because this is what communities want. Unfortunately, counties do not work in Massachusetts. We need to even go dive a little deeper. I think promoting this whole area is incredibly fruitful.
DR. MAYS: Maybe we need to have a philosophy about what we think in terms of community participation or community data that kind of is there so that we can have it as a metric for the other group to some extent to make sure that they remember this as they do their work. It may not always apply, but if we could ask them to use this as a metric of have you thought about this at the level of communities. That might be actually helpful to them.
PARTICIPANT: It certainly aligns with the quality subcommittee focus, which starts with the individual and works up from there.
MS. MILAM: Vickie, it sounds like we are adding another column in our third dimension on this vision document – a community philosophy.
DR. MAYS: That would be cool if we do it that way.
MS. MILAM: And then we can —
DR. COHEN: Federal role of convergence, community philosophy.
MS. MILAM: As we come up with important ideas about that, we can drop it in so we do not lose it. It will encourage people to come back to it. Thank you.
MS. KANAAN: Not to be an advocate for the Folsom Report per se because your points are well taken about that, Vickie. I have had concerns about it sort of service frame or bias. The idea of a community of solution, especially at the time that it was originated. They were really trying to help people think outside jurisdictional and governmental boundaries and to help people understand the idea of the fluidity of community and how it can be focused around shared problems, shared goals and so on. There is a lot of use in that set of concepts.
MS. MILAM: Susan, do you see that as similar to and part of convergence or do you see that as a separate issue?
MS. KANAAN: I do not think there is a perfect overlap between the thrust of the Folsom Report and the ideas of convergence, but maybe the overlap is in the areas that we really want to emphasize. I do not know. We can be looking for what gets lost. I think this idea of the fluidity and the multiple definitions of community. Now, we can shift that over to community philosophy. The Folsom Report in a way was code I think for a whole set of concepts for a bunch of useful concepts that are in that report. I think a lot of us have resonated with various ones of them. It is narrowing in some ways, I think, to use that label. Yes, we can just move those concepts.
MS. MILAM: Do you see it as adding another column community solution or does that go into defining community?
MS. KANAAN: I think it is part of community philosophy the way I think about it anyway. I think the way I hear or think about that phrase is what are our basic assumptions about community, as they pertain to this project.
DR. BREEN: As I am thinking of or looking to this conversation, I am thinking about what does represent the community philosophy and I think community budgets, what they spend their money on and their planning documents, which increasingly cities, states, counties, all have planning documents or at least mission statements, goals, that sort of thing, which describes their orientation, their philosophy. We may be able to call it out of that and then we could also look to see how those budgets are implemented on the ground and how closely to the planning statements it is, for example, if it says good schools. Well, are all the schools good or are there disparities in the way education is delivered in a particular county or state wherever the centralized aspect of schooling is? It is 50 states again. We have many things going on or many models going on here.
The other thing in terms of data that that makes me think is that the county or in the case of Massachusetts or Louisiana, Oklahoma, places that do not have counties, whatever the logical entity is for data collection is it is probably still a good geographic unit to use. But maybe what we need to think about is more sample or more information from those places so that we can bore down or rather communities can bore down more into the neighborhood level or into the town level or into whatever levels they need and want to look at.
One of the things that was striking, I thought, in the Folsom Report and it is true when I think about what we do in Rockville is sometimes we need to work with the county. Sometimes we need to work with the state. Sometimes it is the neighborhood. It really depends on what the issue is or what the question is that we are trying to address. We are probably not going to find the perfect entity for measurements, but rather we need to think about getting enough information within a larger entity to be able to bore down and get at the smaller units as we need them for a particular research question. I say we, but I mean the communities or whoever is looking.
DR. COHEN: I really focused on the word we, Nancy, because clearly you distinguished your involvement in the community from the local government. I think that raises a huge issue when we talk about community. Are we talking the interplayer of the relationship between local governments whether local government is the town government or the county government or the state government and we, which is the community group or the affinity group that really I still think is the central target for what we are trying to develop? The we’s do not really collect most of the data, but it is the we we are trying to provide the data to and for whether it is bike advocacy or improving the quality of life, which I define as essentially public health.
PARTICIPANT: That goes back to the issue of what is the question we are trying to address.
MS. MILAM: Maybe this is a good segue. If we could do the literature review quickly, I think everybody is chomping at the bit to start figuring out the vision and then the work plan.
PARTICIPANT: I must admit that — I did the literature review and I thought it was a very useful exercise and I am hoping it will be a very useful resource. It is not clear to me exactly how it relates to this project. If you want to help me focus my — and do people have hard copies or —
DR. COHEN: The literature review. We are talking about — that was circulated. I do not know whether everybody got it or make sure that everybody gets it. Susan did a literature review sort of summarizing empowerment and convergence themes in the NCVHS publications over the last ten years where she put together some of the previous work that focused on empowering communities and on convergence as an effort to jump start our background and this kind of discussion about where we can make a difference and where we need to be going.
PARTICIPANT: Do you know when that came out and who sent it? I do not recall getting it.
MS. JACKSON: Again, I will make sure you get it after the session.
PARTICIPANT: Okay. Susan, be real explicit. Do not assume we have read this.
DR. COHEN: I think maybe it makes sense to hold off on the discussion about this until everybody has had a chance to take a look at it and think about how that can help refine and help focus where we need to go.
PARTICIPANT: Can I just ask if lead staff for this would make sure that we get things via email and not just refer us to SharePoint because some of us are still having some SharePoint issues here? Until we can get that settled about SharePoint, I think it will be great.
MS. MILAM: As you look at the literature review, you might find it helpful as a jumping off point to pull an old report. Yesterday I grabbed a report off the table that it was ten years old, but spoke to defining data elements much like Walter was talking about. As Bill Scanlon says, a lot of this is not new. I think when we look at an issue, we would be well served to go back and see what we have already said about it and see if the recommendations have been followed or is there more work to be done instead of starting from scratch.
MS. KANAAN: I can give you a five-minute overview by way of introduction. Maybe you will remember some of this when you actually get a chance to look at this. I was asked to do this primarily I guess by Marjorie or by senior staff. And the idea was that we not — just to remind us that we are not starting de novo with this project that the committee has done a considerable amount of work not just in recommendations, but analysis and so on that is very relevant and that we can build on. It started out being just a review of the empowering communities to use data to improve health theme, but in past reports. I did not look at every single report. I looked at the reports that seemed most relevant representing different perspectives on data policy issues.
But convergence is another very important and strong theme here. We also looked at the convergence theme. I looked at about 10 or 11 NCVHS reports. And of course it starts with the seminal NHII and shaping the health statistics vision report, which have the two diagrams that we have been talking about already today.
And then just looked at — there is a broad description of each document, and then pulled out a few special points about empowering communities and about convergence. Then there is another column called other notes. Often what I do is call your attention to specific pieces of the reports that seem especially relevant. Sometimes it is a table in the back or in an appendix. It really varies.
And then there is also a brief summary of the Folsom Report, which we have already discussed and a reference to some follow up work that Dan Friedman and Gib Parrish did, the authors of the 21st Century Health Statistics Vision that they did more recently. That is a broad description of the document.
I am hoping that it will especially help orient new members to the hundreds and hundreds of pages of NCVHS documents.
MS. MILAM: Thank you, Susan.
DR. BREEN: Susan, were there any key findings or themes that you noted or recommendations that needed to be picked up again because they have not been implemented or is that over to the community?
MS. KANAAN: It is a really good question, Nancy. I would say that — obviously the themes that I was looking at are the empowerment and convergence. Other than that, nothing leaps out at me. It is an interesting question to go back and think about.
DR. COHEN: That would be a good homework assignment for folks to take a look at these reports and see how they can — what the themes are that we can build on.
DR. CORNELIUS: Is that an action step meaning that we should communicate something to you via email after scanning this? I am always about hitting the tires on the ground.
DR. COHEN: Great. I hope we can develop an electronic communication just an email group to share our thoughts as we move forward. We will schedule some more formal obviously discussions and meetings. We can talk about that a little later. I think we are still at the formative stage where sharing information and ideas will be incredibly helpful for us.
MS. MILAM: Once we all get on SharePoint and get those issues worked out, SharePoint is a great vehicle for having this discussion so it does not litter email.
DR. CORNELIUS: So we can communicate via SharePoint is what you are saying.
MS. MILAM: Within SharePoint.
DR. COHEN: We need to make sure that everybody is up and running on SharePoint before we move over to sharing on SharePoint. I think right now we need to still do it via email until everybody is comfortable.
PARTICIPANT: What are the key themes of the reports and what has been accomplished and what recommendations need to be reiterated?
DR. COHEN: Dr. Green has joined us. Larry?
PARTICIPANT: Larry, I do not know if they can hear you —
DR. GREEN: This group is much more interesting than the one across —
DR. BREEN: This is Nancy again. I am just telling you that we are now having a fire drill. I will absent myself for a few minutes and hope to rejoin you later.
DR. COHEN: We are going to be taking right after Larry talks a 15-minute break.
DR. GREEN: My email has been littered this week with the failures of SharePoint. This is not going to work. You guys need to get going. You need to get going from this meeting right now into February. We need to be a long way down the pike in February. I believe that you are trying to do this with SharePoint is going to fail and that you are going to be frustrated. I suggest that you have an interval strategy that is probably a list serve that is not set up by the CDC, but is set up by one of you so that you can have reliable communication among yourselves. Just put the people on the list and then get used to deleting things that you did not need to come — be selective — each other when you hit apply to all versus say reply only to Sallie or only to Bruce or only to whoever. But the SharePoint thing is not going to happen. We have been messing with it for a year and a half. You really need to move forcefully, directly, and quickly over the next 90 days.
I think SharePoint is a very — leave it to the CDC to straighten it out and get it to where it will be functional. It is not functional. It does not work well. It is clumsy. It is awkward. All sorts of weird things happen across the country when you try to do this. Too many people — the patients say that our wonderful cure makes them feel worse and does not help them. Listen to the patient. Do not listen to the people that are providing the cure. If we go back to February, SharePoint is fixed, we should try it out. We are going to eventually get there. Please do not wait for SharePoint.
DR. COHEN: Everyone hear that loud and clear?
DR. CORNELIUS: Heard that loud and clear.
PARTICIPANT: I heard the time element too.
DR. COHEN: Let’s take a break and reconvene at 20 of 11. Our focus there will be really drilling down and honing in on our work plan.
DR. FRANCIS: It is Leslie Francis. I probably will not be able to join the second half of this because —
DR. COHEN: Please email the group around suggestions of focuses for our work plan. We will make sure to try to get our notes at this meeting out to you as soon as possible.
DR. FRANCIS: I think the most important thing for me to do is to react when I see what the more concrete suggestions are going forward.
DR. COHEN: Great.
DR. FRANCIS: One thing is obviously thinking about community, but leaving it open to different types of communities. I think it would be really interesting to involve different types of communities beyond the geographic, patient groups, for example, because that is where a lot of the data use is going.
DR. COHEN: Thank you.
DR. FRANCIS: Bye.
DR. COHEN: Leslie Cooper, are you still on the phone?
DR. COOPER: I am here.
DR. COHEN: Vickie and Nancy, still with us? Excellent.
MS. MILAM: We have less than an hour and a half to all agree on where we are going and to figure out pretty much the milestones for how we are going to get there and a basic timeline. Everybody ready? I think one of the things we are going to need is that vision document, 21st century vision that has the — it is in the CHIP report. It is also slide 8 from Bruce’s presentation yesterday. If everybody can either pull that up or get that in front of them, I think that is going to be helpful.
If you look at your agenda, we are starting what is referenced as the 9:30 block. We are at 10:45. What I would like to do is to throw out an idea for the end goal so we can all agree on where we want to go and then we are going to figure out how we are going to get there.
If we look at this vision document that was created in 2002, if we imagine that it is accurate for today and it has all of the right metrics on it and we have updated it and we know there is data behind each of these and we have an ability — it is on a mobile phone or it is on a computer screen. We have also integrated the work that Vickie shared with us from RWJ around community values so that there is a way on a website to click some radio buttons for the community. This document is somewhat malleable and gets shaped based on how the community defines their values. We have done all of the work that we needed to do to get this to be free for communities, to have as I said, the right metrics in each of these areas and the data behind it and people can use it wherever they need it for any community and people know how to get it and we pushed it out. That is my vision for where we are going. Tell me how we can improve upon that or if your vision is different.
DR. BREEN: Sallie, this is Nancy. A question of clarification. This would all be on iPhone apps and you could just get the information you needed. It would be at your fingertips in order to answer questions. Is that how this would work? I just was not sure what sort of a dynamic process. It all exists. We do not have to worry about the data being there because it all exists because that is a big assumption.
MS. MILAM: That assumes that we have done the work to identify the data sources. We are talking about the end vision and then that will help us define what we want to do. I can imagine a community leader sitting in a meeting needing to understand some data. So yes, getting at their fingertips. But I can also imagine it being used to inform a longer term planning process. We would need it available through a portal and exportable in appropriate format. We would need both apps as well as really a portal designed to support this and maybe an open source so that folks can improve upon it and it is more useful for people across the country.
DR. BREEN: I like this idea of setting up a very ambitious vision and then figuring out where are the gaps that we would need to meet that. I think that would be something that people would really capture their imagination in terms of having all of that available to them. Using those apps would not be trivial, but to have that idea there because technical assistance is a big deal in terms of retreating the data even once you have collected it. Collecting it is an expensive proposition. But having a vision like what you just described out there and then saying there are a lot of pieces that would have to be done to fill in gaps because there are a lot of gaps between the health statistics vision even when the updated version that we have that includes electronic data and what we actually have. I think this administration would like to see that.
MS. MILAM: Other comments on the vision?
Moving down the agenda, you see we have identified three large areas of work to getting there. As you called out, Nancy, we have to figure out the gaps and the data. What are the right metrics? How does meaningful use play into this? We need to test it with communities. We also need to hear more from communities and see what additional areas are important to them or what tools they might need, their viewpoints.
We identified earlier that we have to define community. This is an area we have talked about at a high level. What else do we need to do to be able to get to that vision? I guess I am wondering. We are starting now with the bones of a work plan. Susan, you are taking notes. I am wondering, Susan or Debbie, how can we make sure we capture our action steps and the components of the bones of this work plan to get out to the group pretty quickly after the meeting?
MS. JACKSON: Kassi is taking notes and Susan as well so between the two. I did not know about a time schedule as to what we can get out.
PARTICIPANT: I have so much I have to get caught on.
PARTICIPANT: I am happy to take notes and send you what I have. That I can do. You have defined an end product now. Have we already gotten to that point?
DR. COHEN: We have defined a vision, but not a product.
PARTICIPANT: It feels like there are steps here.
MS. MILAM: What are the steps?
PARTICIPANT: I do not know what the steps are. What needs are we trying to meet, needs of whom, to what end?
DR. CORNELIUS: One of the things I wrestle with. Forgive me. I know I rattled on about the federal voice. Every time I hear the word community I sit around and I look at all of us and say and who are we representing. There is going to be a point in our journey very soon when someone outside of the teleconference, individual piece that says I am glad you are all having these great conversations, but where are we. We have to figure out how do we have the we, as in some cross sectional element of community involved in this journey.
PARTICIPANT: And that is why it is important for us to identify community. One of the things that was pointed out earlier is that we are not targeted professionals. We are targeting grass roots individuals, but we want to target people that have some understanding of that data, some understanding of being able to take action to move this forward to accomplish whatever the question is that we are trying to address. We do not want to — it is like what are grass roots. Are grass roots the guy hanging out on the corner? Are grass roots the intellectual individual that may not necessarily be college based, but knows how to mobilize a community to get a task done?
DR. COHEN: My proposal that we have discussed already would be to try to hold a workshop in the spring, identify communities, community coalitions or communities that understand data or have data needs however we define those and get feedback from them. First, we need to prepare some materials to summarize what the data gaps are and where we feel data exists. That is an in-depth, environmental scan that should take place over the next several months. And then we have a workshop with communities to get feedback from them about what gaps we are missing and what their data needs are and how best from the federal perspective we can provide them the information in channels that are maximally useful to them.
PARTICIPANT: Are we somewhat targeting vulnerable populations where there are these gaps and by identifying and understanding what the gaps are we are going to be able to address some of those vulnerabilities to improve health outcomes?
DR. COHEN: That is certainly a question. I think we need to do both. We need to help provide basic information for community coalitions that are functioning, but needs support because I think that is what government does best to provide analytic and technical support. That is my personal view. I do not think our goal is to necessarily identify vulnerable populations per se. We are not trying to identify those vulnerabilities. I think we are trying to help support communities that are working to address those vulnerabilities.
DR. MAYS: Bruce, this is Vickie. Maybe we can do what I had suggested yesterday for privacy and maybe we can do it jointly, which is — we keep talking and moving on with this report as if everybody else is with us, but we have not sent the report out broadly. Maybe what we could do is to get this report out of the door and have a lot of feedback about it, which would then help us to see what people’s needs are to get a sense of where they want to go.
It would also help us to see those groups that are wanting to have more input and interaction on this issue. We should make sure we do a good job of getting this to community health councils and community coalitions. But I think we need to get some public feedback about the report and let that help also guide us. We can send something out with a deadline of having something in February and then having a hearing begin to shape up for April or May.
PARTICIPANT: Vickie, when you say send out the report, do you mean the updated Health Statistics Vision report that we did?
DR. MAYS: No. I actually meant the community as a learning system report.
MS. MILAM: There was not any kind of distribution of that beyond putting it on a website. Debbie, do you want to speak to how it was distributed?
MS. JACKSON: We have not been doing as much of the hard copy distribution, but we did get all the reports out to the participants as well as those that the committee members gave us names and addresses and got the material out to targeted audiences that way. Of course, it was posted and we also had a webinar. Any groups that have gone out, any meetings, conferences, our health statistics report, our health meetings. That is when we got the target information out to those. The whole thing was to get the report in people’s hands who want it versus having a stagnant stale list that grows old every six months or so. We have printed closed to 600 copies.
PARTICIPANT: Debbie, did we get any feedback from those communities that we — ?
MS. JACKSON: No, that had not been the approach at this point. Now, we can look and see what we can do is getting feedback even from those who were involved. That was an idea at one point to get a revisit from the intensive discussion that Susan had with these groups and then to hear from them two years later.
DR. MAYS: I’m actually talking about sending it out with a set of questions and inviting feedback in a very formal way. That is what we talked about for privacy when they were talking about moving on in terms of doing their hearings.
I think you give it to a community group and they look at it and it does not say who to contact, how the contact, but this would be an active put in your hands and ask you to respond by a specific date because we want to move this agenda along. And then I think people have an investment. Otherwise, it is like all of us know we pick these things up at meetings all the time, but it does not necessarily mean that we are going to then — we sit there and we might even complain about it, but if it is not an invitation, we do not then actually sit down and write a letter.
MS. MILAM: We have three people who want speak. We have Lee and Larry and Marjorie. Anybody else?
DR. CORNELIUS: I know last year Dr. Kaplan’s office had done that mechanism where his staff had put a notice in the Federal Register around a list of priorities for OBSSR and solicited input and they pulled in input. And what they actually did was — once they pulled input, they had a planning conference and then they used the input and the conference to develop a series of priorities.
One of the items about that is if we had this as a PDF document and you are referring to that in the Federal Register. Basically, they can get to the document. There is a series of questions. There is a solicitation date. And what I have done was I have taken it – I sent it out a list serve of 1300 social work researchers. Once something like that exists, it is just another mechanism for people to reply within that window and provide the feedback that we would need in a call, so to speak, and process.
MS. MILAM: Excellent idea. Marjorie?
MS. GREENBERG: And that is an interesting idea. I am trying to think if the committee has ever published a Federal Register notice of that type.
DR. CORNELIUS: I would not do that.
MS. GREENBERG: I was trying to think of them. Committee has certainly — we publish Federal Register notices all the time on announcing meetings, and it could be announcing hearing, and we even include the questions that are going to be asked and all of that. I have to think about that and talk to Jim.
I was going to say in addition to the distributions that Debbie has mentioned and she has been quite active in this, we also have a session at the National Conference on Health Statistics. I went over and reported to a group at NIH, and I believe Larry also did, on different activities.
The general feedback that we get is that it resonates with people. But obviously to get more systematic feedback you have to think about how you want to do that.
DR. GREEN: I have three points to make and then I am going to go to Denver.
MS. GREENBERG: You are leaving us?
DR. GREEN: I am with some enthusiasm. That was not a statement about you guys. That was a statement about my affection for Colorado and I had not been there since Sunday? I am very much looking forward to it.
One is about the dissemination thing. I want to applaud I think it was Vickie’s point about we still need to do a better job about getting our products out. At the same time, I want to reinforce what Marjorie was saying, and I will do this quantitatively. This was presented in plenary session to AHRQ’s annual meeting of this nation’s practice-based research networks. And by the time the plenary was over, all copies had vanished from the registration table and people were signing up to get other copies of it.
These networks have within them 60 million Americans under care and the practices that in these things and their leadership got it. We know they got it. There is no doubt about it. We do not know what they did with it, et cetera.
NIH has an annual meeting of the community engagement components of all 60 of the CTSA — it was presented in plenary session this year in August of that group. They were driven to the website. The reason she is out of copies is she said everything that was left pretty much and they were gone before the plenary session. People scarfed this up and it went to the community engaged leadership groups across all the country. I am just talking about those as two places where we know we got reach and that we got it into hands of people that are actively working on bringing local practicing folks and local community leaders together. We can tell you it played well.
PARTICIPANT: We really have no feedback —
DR. GREEN: We have enormous amount of feedback that is not formalized. We have the feedback that people want it, people got it, and people said good things about it. It shows up in conversations that people that are working this territory. It is not formalized. That is the point —
DR. COHEN: I think we are looking for a slightly different kind of feedback.
DR. GREEN: That is where I am headed next. The workshop idea presents a great opportunity to get much deeper, much more substantial feedback from a dispersed group of communities. What I wanted to say about the plan for the workshop is we could use what proved successful two years ago. I think that Vickie and Lee and you guys all can once again help us identify communities that are on the scent, swimming up this waterfall, doing their darndest with this and have needs and concerns that they welcome the opportunity to present and discuss and that we can find them and we can invite them. What we need to do is to not limit this to one particular type of situation, but we need to hear from a broad spectrum of communities, which is what we did last time. We had everything from Homestead County and the public health department in Seattle to Los Angeles work that was just knocks your socks off from a much more organic community level.
The comment about definition. Please, I beg you. Please do not decide to delay moving on because you are not sure what we mean by community. What we mean by community is — all over community campus engagement partnerships. It is in all sorts of documents. It is a favorite thing to talk about. We can get all sorts of definitions, but we will wind up back with people having some different viewpoints about what constitutes a community. I beg you to not let that impede your adopting an aggressive timeline.
The one paraphrase just from Larry about the way this community engagement folks at NIH talk about this is a community is a group of people who have a past and expect to have a future and they believe that what happens to one member of that community matters to all the rest of the community. What happens to the rest of the community matters to them. That is a pretty darn reasonable definition of what we mean by community. It breaks free of the geopolitical boundaries. It does not pigeon hole people by virtue of their demography, which is very important.
With Marjorie here, I want to add what I was saying at the break to both Bruce and Sallie. I want work assignments from you guys soon to help you get the other communities involved around the convergence theme. I am quite happy to carry water for whatever you want to get done just so long as you decide to do something and as long as you decide to do it pretty soon and that you decide to do something that we got the — you can get there. And when you do, I am all yours. I want to help. I think that the Populations Committee can just be the point of the sphere to bring standards and the privacy and security and quality folks into this. And as you design the workshop, let’s think about what the issues are that we want to explore about where communities are with this stuff at the workshop.
MS. GREENBERG: Amen and all that. I agree with that on all accounts. You were sitting over there with me as well today this morning where they are talking about standards and lack of standards and lack of commitment and interoperability and how expensive this all is for providers and burdened they all are and more of the same. I do not mean to diminish it. There has been a lot of rich conversation.
I am just sitting here wondering and I mentioned to them that you were the other side of the coin and you were across the hall and the committee is all of these activities. Bill keeps bringing up this enormous cost of this lack of administrative simplification, which is totally nontrivial.
To what extent do you think — I do not expect an answer. I am wondering, you having been over there yourself and being on both sides of this as well. To what extent can communities really force these providers and these care groups, et cetera to say we are not going to accept this any longer. We do not have continuity of care. We do not have administrative simplification. We do not have robust data exchanges. Enough.
DR. GREEN: — hypertension documented over and over again by the CDC. We would like to do something about. We just work together on this. I am with Marjorie all the way on this. What I want to do is encourage aggressiveness because of what we heard in the full committee meeting. This sucker is moving. We can sit around and perfect our approaches and our products for two or three years just in time for no one to be interested in them anymore.
Marjorie is actually making a key point, is that we can enable communities to get their voices heard and get them —
DR. COHEN: What do we have to do? What are the specific steps we need to do to enable these communities, to empower these communities?
DR. CORNELIUS: Just opening up the door they are going to run through. The big issue is on the other side we are dealing with the business of health care and over here we are dealing with the community’s voice. And basically what we end up dealing with is if the community hears that we are seriously — that we are not faking this journey about giving them voice and finding a way to make it meaningful. We do not have to worry about whether the community will have a voice. We will have to worry about how much of a voice we will get and how to stay our true to our promise to them. We talk about stewardship. It is going to be how we steward what we do as we go down this path of putting information out, getting the input, having the feedback translated into whatever we are saying is going to the department or not and being transparent throughout the whole process.
DR. COHEN: I agree with everything everybody said and I am trying to figure out what that means for what specifics we do.
DR. CORNELIUS: I still want to come back to — Larry was really nice in saying that 50,000 people got the document. As he was talking, I said wait a minute though, I have not heard back from the people who received this what are they thinking in terms of did this document speak to them. If so, how? And if it hasn’t, what is missing?
PARTICIPANT: That is the issue.
DR. CORNELIUS: We have to create a reciprocal communication process between us and the community, and the piece about BRFSS is just an example that we have to do something. We are telling people, this is what we need to hear. This is a mechanism or two or three and we are going to put it in motion and it has to be a live, organic thing as —
DR. MAYS: But I think it is really what Bruce was saying is that it is a different group that I think we are really focusing on trying to hear from. The people that we started out interviewing, and we are talking about an agenda on their behalf as if they do not have a voice, and that voice does not need to try and come through the groups who come to the conferences that we are going to, but it needs to actually go down a lot. I think we are really talking at a different level.
MS. MILAM: Let me ask a question here. Optimally, if we could do a survey through the Federal Register, we would obviously get a far broader reach than the limited number of communities we would hear from in a hearing. Would we be able to manage the results coming back? How would we manage it?
MS. GREENBERG: We would have to think about that. First of all, I do not know exactly —
DR. CORNELIUS: That is why I would suggest maybe an offline conversation with Dr. Kaplan’s office on how did — the mechanisms behind the scenes are managing all the input they have received, and how they have to have the federal phase and what we could not tell you about what we can and cannot tell you and how it translated into broader priorities. In other words, there are some things they had to do to manage the input and create a process.
MS. MILAM: Marjorie, let me ask you this. Is there a way to gather informal input through something like SurveyMonkey that can be distributed through lists of communities that would be not a formal process, but would give us — it would engage communities with us. It would make us more transparent and we would have an ability to electronically manage the information.
MS. GREENBERG: You cannot go too far in conducting these surveys. One thing you can do is — I suppose you could associate it with a distribution of the report with maybe a few questions in the way you described, but we cannot start going out and surveying in communities even with Susan’s work, we made it very clear she is collecting background information for our hearing. She was not interviewing communities. We do not want to run up against some of these OMB restrictions on surveying people.
PARTICIPANT: And then Freeman had some output and input, as well. There are ways to get information. It is just how you pull that together.
PARTICIPANT: My question would be is there a way to do it in a different frame. Like partnering with Robert Wood Johnson or California endowment or within some sort of — public/private philanthropic partnership, get the reach, get the other elements funded to bake in the feedbacks so there is actually some metrics and then leave some space for whatever it is.
PARTICIPANT: I think that will take a long time to try and do it through one of the foundations.
MS. GREENBERG: It might be a good time to sit down with John Lumpkin.
DR. COHEN: We need to keep our eyes on the prize here. There is a short-term prize and a long-term prize. Leah and Marjorie are talking about longer-term engagement prizes. Where Vickie started this conversation is we need to actively solicit community feedback to determine how communities see what the gaps are and their needs for data for specific measures, understanding data sources, and metrics. We have this report out that has that frame, but we have never asked communities specifically to respond to those questions. Those questions will help inform us about our work in preparation for a workshop or a hearing where we can hear in more detail form a subset or a representative group of those communities to give us in person feedback.
MS. GREENBERG: We were thinking it was going to be shorter term.
DR. MAYS: I have a question and that is — and Marjorie, I guess you can answer whether this is a problem because some of us because of our academic standing can very easily do something like this. When I say easily meaning we know the groups, we can send stuff out. It may be then we would have to come back and say can you help us compile it. I do not know if that is a way to get quick feedback.
The other thing is you can find out how onerous the process is if you ask Susan Queen because her office had to manage with the Office of Minority Health the feedback that came in to the questions for 4302. That was pretty big. She can tell you how easy or difficult it was.
MS. GREENBERG: When they put out the standards?
DR. MAYS: Yes.
MS. GREENBERG: What are the questions you would want communities to address?
MS. KANAAN: I would like to pin down or lay out, two different ways of thinking about this. We have talked about getting feedback on a report that is a couple of years old by now, which is one way to go about it to frame this. Another way when Bruce talks about it, I hear more just asking straight questions. The third way is some combination of the two. Does this report provide a useful frame? Do the comments about the missing infrastructure and so on, resonate with you? And then beyond that, what are the measures and data and so on that are missing.
I would hate to see us get stuck just in terms of framing it in terms of this past report. At least it should be some combination of the old questions and new questions.
MS. MILAM: I think we need to look at where we are going and then devise the questions to get us there. We start with what are the relevant metrics or frameworks. What is that communities need to be measuring? That needs to be aligned with their value system. And then you look at what data you need for those metrics. I would back into it. And to the extent it is useful to refer to the prior report, I think it is helpful. But I would not let that be a driver.
DR. CORNELIUS: Is it possible to do that and use this because here in Appendix 4 of your report you actually have a two pager here with a bunch of questions. I tell myself I hate to reinvent the wheel. If someone put the trouble into writing a report, first I am going to read the whole report, but still ask the question even if we have to revise the questions that are on those two pages, is that helpful even if it is a shorter version of that? I always like to take advantage of whatever hard work we have already put into something.
DR. COHEN: Lee, could you just read us a sample of what those questions are?
MS. KANAAN: Is it toward a research agenda?
DR. CORNELIUS: Right. It is toward a research agenda on community learning systems for health. I am going to go probably down to the bottom. There is a section that says enabling a health system for community health, creating a roadmap with the key principles of aggregation.
PARTICIPANT: What page is that?
DR. CORNELIUS: It is on page 42 to the top of page 43. I will just read two questions. Question one at the bottom of page 42. What are the methods we may use to learn from the entire community data aggregation or mash up process both up and down the stack from data source or aggregate or composite report and also learn from experiences across community health data sites combining multiple disparate data sources?
One of the things I will say about all of this is that we need to state this is sixth grade language.
MS. MILAM: I do not know. I would start with looking at your community attributes.
DR. BREEN: Can I make a comment? This is Nancy. I am just listening to the conversation and trying to summarize here and also provide a little bit additional information. I heard Vickie suggest that we use — we send out to the community the learning system documents. I know there has been a little bit push back on that. I agree with — was it Lee the last speaker who said that we should use our hard work and that also helps ground people so that they can see something we have done, which in fact they have contributed to. I would recommend we go back to the people who contributed to this report and then anybody else that we think would be relevant.
One group that I think would be relevant is a new group that just developed or was founded this year by Rick Brown. Rick died earlier this year. It is the National Network of State and Local Health Surveys. RWJ funds that. They have only two years funding. This actually might lead to additional years of funding because community health learning processes and data collection are a priority of RWJ. We could get additional feedback from them. It would be a relevant constituency. We could certainly ask others.
But I think getting information from leaders in the field and people who have helped us in the past is going to be very useful information. I am not sure how we would do that. Maybe the national network could send it out or Vickie suggested academics could send it out. Or there is now a quick process. That is a relative term here, but for getting clearance through OMB, which it only takes a couple of months. It is a seam line version of the process. It is not out of the question for us to run a survey if that is what we decide to do.
But I think just asking for structure feedback with questions is a good idea. And then we could use those questions or refine those questions for a subsequent hearing and based on the feedback that I think would help us decide who to invite to the hearing that we have.
I think including the National Network would also help with the engagement because it is an organized group of people who are doing surveys. Obviously, survey data is not our only target, but it is a target and it certainly reaches the entire population, which is something that electronic health records and other sources of information usually reach a targeted population rather than the entire population or in terms of — it is a sample, but it represents the entire population. It seems like we have some ideas that we could carry forward.
MS. MILAM: I am going to take one more comment from Susan. I want to do a time check. I am going to reflect back to everybody where I think we are. Susan, real quick.
MS. KANAAN: I just wanted to ask Vickie briefly to describe the network of the partnership between of academics and communities that you mentioned yesterday as another possible network.
DR. MAYS: — brought that up. It is called CCPH. That is a group in which they cover a large number of academic institutions as well as community groups. It is community groups who very much are invested in data and they already have — as a matter of fact I have an email ready to send out to you all, but they have lots of different publications, activities that they have done. They have a yearly conference. I am sure Nancy Breen is aware of them as well as Leslie and others. That is just one of the groups.
But when I was talking about sending something out, I just meant as individuals like Lee or myself. Lee can actually under the auspices of work we do maybe send something out for you all.
DR. COHEN: Leah had a comment and then I will turn it over to Sallie.
DR. VAUGHAN: An additional thought is in terms of trying to do a deeper dive and outreach and engagement is that there is an increasingly popular series. Some of it out of CDC. Some of it out of ONC.
MS. KANAAN: This is Leah who is on the working group on HHS data access.
DR. VAUGHAN: One thing to consider maybe would have to be partnership with academic institutions, some of the foundations that have been doing it. One way to simultaneously reach a lot of communities touched on with a webinar, but to have something that is more active engaged to have them asked out of the groups so that you can simultaneously say if you are going to do all the — public health, for example, or all series of other community-based organizations. Have everybody get the executive summary, access to the full report, and a series of questions, have a shared thing using a lower cost digital access point and a systematic way of gathering that information and the framework. Participate in a tweet chat with the director of CDC every few weeks. There are thousands of people who participate. The so-called reach of social media is somewhere in the order of 1 to 2 million people for these things over the course of a couple of hours.
PARTICIPANT: How many responses do you think that would yield?
DR. VAUGHAN: The participation as I say is usually 1 to 2 million for those things.
PARTICIPANT: But how many responses do you think that would yield?
DR. VAUGHAN: What do you mean by responses?
PARTICIPANT: If we ask them to give us feedback, do you think ten people would respond or a million people would respond?
DR. VAUGHAN: Yes.
DR. COHEN: We only have a half an hour left. Let me try to summarize where I think we are now. We have all agreed that we need to actively solicit community feedback on something. There are different ways to do that. We have rejected the federal approach because we want feedback in the short run. We are going to explore options through the networks that the partners here have. What we need to do is decide on what the set of questions is that we are going to ask for feedback on. And loosely the questions — the community as a learning system is a nice context that I think we should share, but the questions need to be more focused on what our ultimate goal is which is I think giving voice to the community by giving the community more access to data which combines Larry and Marjorie’s grand vision of giving voice, but doing something concrete that we can do so that our short-term goals are to develop these sets of questions and to figure out the channels of communication to get feedback from and then how to aggregate and analyze that feedback. We want to do this over the next couple of months to prepare for a workshop or hearing with selected groups in the spring. That is what I am hearing where we are at now. Does anybody have any revision or modification or addition to that?
MS. MILAM: One thing I would suggest is that when we identify the communities to come to the workshop and we pull on the community as a learning health system report that we use our definition of communities to select from within the participants of the hearing because we heard from numerous organizations who really are not communities.
DR. COHEN: That will be part of our outreach to figure out what the communities are, the kinds of community organizations we want to hear from.
PARTICIPANT: Sallie, one of the things that was striking to me there was at least one I think it was Sonoma County public health representative there. She was the director of their public health department. She was not the community. It is true. But she was, I think .representing the community. That is how she had decided to run her public health department. A person like that I would argue we would want to hear from here because even though she is not the community she really is. That is why she is using data. To her and I think this is maybe something we need to think about is the object of getting the data is giving a voice because people who do not speak are still behaving in certain ways and having access or not having access to things. We are counting them with data even if they do not speak to us directly. We know they are there. We are trying to give them a voice through collecting information about that.
MS. MILAM: I agree with you. Sonoma is not the example I would use.
PARTICIPANT: Sonoma is not the example she was talking about —
MS. GREENBERG: She was not talking about excluding Sonoma.
MS. MILAM: For example, we had NADO. We had HIEs. We had a state-led surveillance program. Those come to mind.
MS. KANAAN: We have a list of tasks. We have the beginnings of a work plan.
MS. GREENBERG: I wanted to react to what Bruce had said. I do think that although I have sort of rejected a caution against the Federal Register approach, I do think that we could reach back out to the community that we are already engaged with, those people, the ones who came, and the ones who did not come.
I think we have community with more than those who actually ended up coming though I know most of them accepted. We could even reach out to those we thought of inviting but did not as follow up and you could ask them for some structured feedback because these are people you are already engaged with and you are thinking and telling them that we are planning for another workshop. I do not want to completely discourage that. Then I think for a broader dive as it were then use some of these other mechanisms.
But somehow, you may have talked about this before I was here. I think that Larry wants more than you are developing a set of questions and planning this working. I think you want more than that. I saw there was another email from Leslie about the environmental scan that we have talked about, as well. What else is on the work plan? Is that what you are going to talk about? Are we committed to doing the environmental scan?
PARTICIPANT: We talked about a survey question bank to systematically see what kinds of questions are being used.
MS. GREENBERG: I know what was on that long list, but I am wondering what did you agree to this morning. That is part of the research agenda, but I do not know if that is something you have agreed to in the short term. What about operationalizing the vision? I realize I was not here.
DR. COHEN: The ultimate goal is to operationalize the vision. The first thing we need to do is identify the gaps and then we rolled over into a focus on trying to get feedback from communities about where they see the gaps. Thank you for bringing us back.
I think simultaneously while we are trying to get feedback from communities, we should be doing and this is primarily I think a staff responsibility and Susan with support from all of us beginning an environmental scan for the data that exists and where data gaps are in the communities in the areas that are represented by the vision document.
MS. GREENBERG: Is that the scan or is the scan really what else where all the other activities and where are the players and all the different people going on so we are not duplicating them or that we are partnering with them?
DR. COHEN: I guess you are right. The scan is what is out there in terms of data that is available at the community level or to communities for the domains in this vision.
MS. MILAM: Don’t we need to validate that vision though again recent thinking? If we know the vision is right, we would need to say yes it is right. But do we need to check that against AHRQ’s work and RWJ’s work and do that scan of what other communities are looking at, settle on the model, and then do a second environmental scan of what data exists.
MS. GREENBERG: It is more than an environmental scan to say what data exists. I do not think Susan or even staff, are in a position to do that. I guess we are using the same words. We are talking about different things. Susan, what had you thought of when you had suggested or proposed and if you were to do some kind of environmental scan? What kind of environmental scan were you thinking about? We all seem to be talking about different things.
MS. KANAAN: I am just aware that there are other initiatives under way that are looking at some of these same questions. Vickie has mentioned the IOM activities. RWJ has its own activities, et cetera. We could add to that list right here. There are a lot of things going on out there that are in a sense looking at this in the way we are which is what do communities do, where are the gaps, how can we help fill them. I think we are partly trying to position ourselves in a space where other people are not already working or not approaching it in the same way.
MS. GREENBERG: It seems to me that one of the things we could use the environmental scan to is an additional group to reach out to. They can either say once we identify them, what they are doing, whatever, understand them a little better. They can say we are doing that. We actually have this project or no, we think this would be a good thing to do. We have not done it yet. And just see where it fits in with our bandwidth or scope. Some of them have seen our reports. Some of them have not. I would see that — in addition to reaching out to communities to get feedback, I would say do the scan of initiatives and related initiatives and reach out to them as well. There is nothing to stop us from doing that.
DR. COHEN: I am hearing three specific tasks. One is doing this environmental scan of what else is going on in a related space to where we are thinking of doing work. Second is developing a set of specific questions to get feedback from communities. And third is identifying both specific communities and general groups to send these questions with a copy of the community as a learning system too. Do those seem like reasonable short-term tasks for us? This is all in preparation for some kind of workshop in the spring to pull all this stuff together and help us move forward in identifying and creating data that will be useful for communities.
DR. BREEN: I fully agree. I was trying to think about mechanisms. It seems to me what we can do in terms of our broad goals here is that we could facilitate these different groups coming together, getting to know each other, and maybe collaborating or making it possible to collaborate as needed. And then we could also if that is what comes out of these work groups, we could also advise the Secretary that support for these kind of local data in order to fulfill the vision of a health statistics that runs from local communities right up to the federal level and the United States is something that we would support and we would like to see the department support it in any way that they could so that there would be a consistent message coming from our recommendation and any organizations that grew out of the workshop.
MS. GREENBERG: It sounds like the Cooperative Health Statistics System 40 years later.
DR. BREEN: Sometimes it takes a long time to implement these things.
MS. GREENBERG: You were not here, Nancy, but Bill Scanlon made a great comment yesterday that he had been in the health policy field for 36 years, and the good thing about being in health policy is you do not ever have to learn new issues.
MS. KANAAN: Would it be helpful to try to articulate the vision? I think it might be helpful for me. We have talking about validating the vision and we are working toward this vision. At least I am not completely clear about what the vision is. Can we say is it giving communities a voice by providing them with better data? Is that the vision?
MS. GREENBERG: I thought the vision was the influences on health vision.
MS. KANAAN: That is why I wanted us to pin that down.
DR. BREEN: I think we think we want to improve the quality of life in communities and public health and communities throughout the United States and that we think that giving people data provides a voice to these communities that will help them do that.
MS. MILAM: I think that is our goal. To shape the end product to do that we were talking about taking the schematic and making it available through a portal or apps on phones so that the information is easily available to the individual in their community who needs to use it.
PARTICIPANT: And a free app if possible.
DR. COHEN: And our assumption of what we can do to improve the quality of community life is by providing information to help communities better identify their priorities and make better decisions. Our goal is not to make these decisions, but provide more information to them. This is what the federal government can do. It can provide this level of technical support for communities so they have the information so the communities can make better decisions.
MS. KANAAN: I would suggest that that sounds like a vision and that making the schematic available, operationalizing it is maybe a strategy or a tactic.
MS. GREENBERG: I guess the vision is a community and the learning health system.
MS. KANAAN: You might say.
PARTICIPANT: We are back to that.
PARTICIPANT: More focused on population health.
DR. COOPER: The technical support that they would receive will be coming from which agency?
PARTICIPANT: I am not sure we can say that. I think that might be too much detail at this point. Maybe we will find out.
DR. COHEN: It might be clear or it might require a cooperation across not only HHS, but I am sure community — in my work with communities, it is not the traditional public health data that is missing. It is all of the ancillary data around the housing and social determinants and integrating public health writ large that helps communities make better decisions. Maybe we will get to that space, but time will tell.
MS. KANAAN: I would like to suggest another task for us because I think it was one of the really fruitful things that came out of this. It was a thread through this conversation. Lee and I talked about it a little bit during the break. This community philosophy that we talked about, what do we mean by philosophies and how do we intend to think about them?
What I would like to suggest is that I try to pull together what I think are the major insights that we had today, and that we really try to pull together a short statement of how we are thinking about communities. And then beyond that we may ultimately have to decide within that broad definition, what are we intending to focus on here, which is what we did with the last report.
I would think that that definition and that framing might help us be on the same page with other work groups or other subcommittees. They may or may not be thinking about communities the same way.
We did really narrow our focus here today. We are talking about the sort of informal, non-governmental sector of actors — not sector, but dimension of actors, et cetera, local problem solvers, local coalitions, et cetera.
MS. JACKSON: Several of us attended the APHA meeting in San Francisco. Vickie, still on the line? And then to hear the vocal, the strength, the sense of feeling and power of a lot of those groups, I am not really sure how to target them and grab them in. It was electric.
DR. COHEN: I want to give out a homework assignment.
MS. GREENBERG: Can I just say two more quick things? One is I really like this. We can debate about some of the stuff in it. This is very good. Has this gone out to the whole committee?
DR. COHEN: Yes.
MS. GREENBERG: Super. The other thing is that — sometimes I forget even where I have been. I am sure we all do because we are in different groups talking about the same issues. But last week when Public Health Data Standards Consortium met, they really were talking in this space too although more about standards, but certainly standards as a foundation for data exchange. And the Cantor Foundation was actually representative there. They have done follow on work to the IOM report on the learning health system.
I think we all agree that the learning health system work by IOM is still very health care centric and that really it sounded to me what this committee and group is trying to do and the National Committee has tried to do from the start is to make it more around convergence and less just about health care. Of course, the discussion across the hall is very health care centric. That is where the money is. It may not be where the solutions are, but some of them are.
But in any, even apparently RWJ has put out some kind of a request for projects related to the learning health system and communities. I do not know exactly what it is. We could find out more about it. But you might want to connect with the Public Health Data Standards Consortium because I told them about what you all were doing. Obviously, you are not going to be part of a grant solicitation or grant response.
But I think one of the things they were talking about was trying to do some demonstrations in some communities. Some of the work that you have done whether it be operationalizing the influences on health or whatever could fit into that. And APHA was there for the very first time because you mentioned APHA. Even though it has been the Public Health Data Standards Consortium since 1999, we have never been able to engage APHA before because they were more interested in policy and data standards. They got a new director, chief of staff — I am not sure what her goal is. She gets it. She was involved. And APHA might be involved in this grant that they are talking about.
I think this is worth connecting with and could support some of what you want to do. They may not do the grant. They may not get funded, but it is in this space.
DR. COHEN: Good, our group homework. First of all, I would like us to continue talking via a list serve. Essentially, we will make sure we have everybody’s name on an email list and we will try to use that to just informally communicate until we establish our next meeting, which will hopefully be soon, which will be a conference call.
Our homework assignments are read all the background materials so we all know what we are talking about when we talk about these diagrams and these reports. Provide us information about what other activities that you know are going on in this space. What other projects or data initiatives are out there that might help us better understand where we can be?
We need to really develop a very concise set of questions to get us to where we want to be. If you have suggestions for specific questions or the domains for those questions, let’s try to compile those.
And then to the extent that you have suggestions about targeting specific communities or specific groups, the survey group, networks that you are involved with, let’s compile those so we will be ready after we get these questions together and frame what feedback we want we will be able to send stuff out quickly.
How does that sound?
DR. MAYS: This is Vickie. It is a little hard to write the questions until we really nail who we are going to do. I think the communities are still all over the place in a sense of we have gone from people who run surveys to grass roots community groups. I think those questions are very different for those groups. I think we need another iteration of really settling where we want to go with whose voice.
DR. COHEN: I would suggest if you have any focus that you want for these questions, develop a set of questions for that particular target group. If your focus is on soliciting feedback from community groups, develop a set of questions from them. If you want to get feedback from survey groups or data providers, compile with a list of questions for them. And then we can sort out — you are right, the questions might be different depending upon whom we are soliciting input from. But I do not think we have the luxury of time to resolve one target group. Identify your target audience and develop the questions for them.
DR. BREEN: Thank you, Bruce, for laying that out so clearly. Would you mind also just sending us an email with our homework assignment so we will all be sure to do it?
DR. COHEN: This is a pass/fail actually.
DR. BREEN: I was wondering about two and four. Provide information about other projects and data initiatives that are out there. The fourth one was different from that because that is a list of groups that we want to solicit information from.
DR. COHEN: Yes.
MS. GREENBERG: Or groups who could solicit information for us. Which was it?
DR. COHEN: Marjorie amended that to add or groups that could do this work for us. It is where we want to target it or if you know groups that could help us reach out and get more input that would be fine. We will send all this out early next week sort of a summary of our conversations and our four short-term tasks.
MS. JACKSON: Sallie asked who was doing notes. Between the four of us, we have four staff here, we will get the notes together.
DR. COHEN: Thank you all. This was a really great start. I think this is going to be a fantastic initiative.
DR. BREEN: I agree. Thank you so much for your leadership.
DR. COHEN: And also if you have colleagues in your organization or other organizations that you think would be interested and can contribute, please let us know. We would like to just reach out and pull in as many people as we can. Thanks a lot. Bye.