[This Transcript is Unedited]
Department of Health and Human Services
National Committee on Vital and Health Statistics
Subcommittee on Population Health
June 12, 2014
Hubert H. Humphrey Building
200 Independence Avenue, SW, Room 705-A
Washington, D.C. 20024
P R O C E E D I N G S (8:03 a.m.)
DR. STEAD: Good morning. We will convene the Population Health Subcommittee block of our discussions as a full committee. Let’s start with a roll call of who we are and our conflicts. I’ll start. Bill Stead, Vanderbilt, member of the full committee and co-chair of the Population Health Subcommittee, no conflicts.
DR. WHITE: Good morning, I am Jon White, director of the health IT portfolio at AHRQ, liaison to the full committee and no conflicts.
DR. GREEN: Larry Green, University of Colorado, member of the committee, no conflicts.
MR. BURKE: Jack Burke, Harvard Pilgrim Healthcare, member of the full committee, member of the Privacy, Security, Confidentiality Committee, member of the Population Health Committee, no conflicts.
DR. JEAN PAUL: Tammara Jean Paul, staff to the Population Health Committee, CDC and CHS.
MS. KANAAN: Susan Kanaan, writer for the committee.
DR. FULCHER: Chris Fulcher, University of Missouri. I serve on the Working Group for Data Access and Use.
MS. KLOSS: Linda Kloss, member of the full committee and co-chair of Privacy, Confidentiality and Security, and no conflicts.
MR. SOONTHORNSIMA: Ob Soonthornsima, Blue Cross-Blue Shield Louisiana, member of the full committee, co-chair of the Subcommittee on Standards, no conflicts.
MS. JACKSON: Debbie Jackson, National Center for Health Statistics, CDC, acting executive secretary.
MS. COOPER: Nicole Cooper, staff to the committee.
DR. STEAD: Thank you. Is anybody on the phone?
DR. BLEWETT: Lynne Blewett, University of Minnesota, no conflicts.
DR. STEAD: Thank you. Anyone else on the phone? Okay. What we are hoping to do in our time this morning is to start with Susan Kanaan’s presentation of her structured interview surrounding community data readiness, and then have group discussion of that and then get into plans for the fall Community Data Roundtable.
Good morning. Do you want to read yourself in, Walter?
DR. SUAREZ: Good morning my name is Walter Suarez with Kaiser Permanente, member of the committee, member of this subcommittee, and no conflicts.
DR. STEAD: Do you want to take off, Susan?
MS. KANAAN: Just a moment of background on this. The topic of community data readiness emerged or was really kind of crystallized at our last roundtable on communities as learning systems, at which one of the major themes was the importance of meeting communities where they are, and the reality that there is a wide range of experience, skill, comfort, et cetera, in using data in communities around the country.
The term that was used for that or is being used for that is data readiness. I will have a few comments later about other alternative terminologies. We decided we wanted to explore this topic and along with it the question of what kinds of technical assistance are available right now — looks like we will take a break here and read some more people in. This is good because three more of my interviewees just walked in.
MS. JACKSON: We just did introductions. We may as well, for those who were waiting in line for security, maybe you can add to the roll.
MS. GOSS: Alix Goss, Pennsylvania eHealth Partnership Authority, member of the Standards Subcommittee, member of the full committee, no conflicts.
DR. FRANCIS: Leslie Francis, University of Utah, no conflicts, member of Populations and co-chair of Privacy, Confidentiality and Security, and member of the full committee.
DR. WALKER: Jim Walker, Siemens Corporation, no conflicts, proud to have contributed to American security.
DR. NICHOLS: That is hard to follow. Len Nichols, member of the full committee, Population Subcommittee, and no conflicts.
MS. KANAAN: I saw Paul Tang out there. Paul could join us.
DR. TANG: Hi, Paul Tang, Palo Alto, Medical Foundation, member of the Data Use Workgroup.
MATT: I am Matt. I am with the National Association of County and City Health Officials, part of the informatics group there.
MS. HENRY: Maureen Henry, consultant, writer.
MS. KANAAN: Welcome everybody. We are hoping that Bruce Cohen is on his way from National Airport even as we speak. WE hope to see him walk in and cause another round of excitement.
DR. GREEN: When he comes in could we all stand up and applaud?
MS. KANAAN: So to back up a couple of sentences, the theme of community data readiness emerged as an important part of looking at helping communities become learning systems for health, in the roundtable that we had just a little over a year ago. Along with it the idea of trying to figure out how to meet communities where they are, at whatever level of readiness. So this round of interviews that I just did was really to begin to try to pull together some of the key ideas in that. Also to start to look at what kinds of technical assistance are now available and resources, and how the providers of that assistance are thinking about this question of data readiness.
So we are kind of early in our process, but I began with interviews with then really members of the family, or the extended family if we include a colleague in Northern California in that. I have some things to share from what I learned from them.
I will start with a quote from Kenyon Crowley, who is a member of the working group: I think of community data readiness as the ability to effectively, efficiently and systematically access, combine, analyze and apply insights gleaned form community data to solve problems and increase value for the community.
That’s a pretty good definition, I think. It is one of the things we were looking for, operationalizing this definition.
I talked with ten people whom you see here. You know all of them, with the exception of Jen Lewis, who I hope will be with us in our roundtable in the fall. She works in Sonoma County, at a sort of on-the-ground level. She is part of the Department of Health Services there, but she works with a lot of community groups and has a lot of interesting things to say about helping communities learn to use data.
The questions were actually in the background materials that you received I your agenda book, with a covered topics, including the operational definition of community data readiness, specific competency and skill areas, what kind of attributes make communities good data users, the whole topic of how and when to use experts and the role of experts. There was a little bit on community-based participatory research and how that plays into what communities are doing or can do.
I was kind of watching for and asking about case examples and model programs, and heard about some really interesting ones. And at the same time, because ll of these interviews – a major purpose of this stage of the project is to lay the groundwork for a roundtable in the fall, where we will explore this topic more systematically and more thoroughly and have a chance to hear from a wider range of people hopefully.
I was starting to collect suggestions for participants. We also looked a little bit at existing tools and ideas about some new and possible tools, and I will share some of that with you later. A couple of underlying questions that I particularly drew a couple of people out about were where does NCVHS belong in this big array of activities and explorations? And ow can it make a contribution? How should it think about advising the Department in this area?
Also I had a very interesting conversation with Maureen Henry about the synergies and overlaps between this and the data stewardship process.
Okay, here’s Bruce.
MS. KANAAN: Bruce, we are very glad to see you. DR. COHEN: Glad to be seen.
MS. KANAAN: There were eight or so questions on the structured questionnaire that I used, and the questions proved quite successful in drawing people out. We approached them variously with different people. This question, number two, was useful in just kind of being more specific about what we were talking about, or at least an aspect of it. So I included this in the slides.
The kind of things communities need to know about or can assess their knowledge about and skills, include what kind of secondary data are available, of course. But in addition there is a list of skills here. This can be clustered or grouped in terms of the level of sophistication or whatever, but talking about assessing validity and reliability, using multiple sources, looking at health determinants and how to think about that. Measures and indicators, data collection, primary data collection using qualitative data. And then the set of issues having to do with privacy, confidentiality and stewardship, which of course is what our colleagues on the Privacy Committee are focusing on.
There were three major themes that emerged from these conversations with these ten folks, in addition to some input on ideas for the roundtable. The first set really had to do with how we framed the topic, how we think about it. It was interesting just to hear people’s comments about the term data readiness. Does that term work? What communicates and frames the topic most effectively to enable us to think creatively about it?
Some other interesting ideas came along. Paul Tang talked about the idea of activation. Some of you are probably familiar with Judith Hibbard’s patient activation measures, which actually have a scale for assessing how activated patients are. So that was one interesting idea. We talked in terms of competencies, skill sets. Chris Fulcher suggested literacy, the idea of data literacy, and Kenyon Crowley told me about a maturity index that is used in the technology field. As I understood from him, either to assess what stage of maturity the technology itself is, or alternatively people’s ability to use it.
So those are some interesting concepts that he gave us to kind of get a hold on the idea. When we talk about data use, data readiness, we can think in terms of different types of users, different levels of ability, and capacity. There are a lot of different ways to kind of segment and zero in on aspects of this topic, or types of communities, and it is one of the decisions that the committee needs to make – is where within this broad range of different types of information and information use and information and users the committee itself should focus in terms of making a contribution itself.
Of course I heard and we talked about the current environment, and there is a lot more to learn about that. And of course this is a very active environment and it seemed that practically every day an e-mail or two or three would come into my box and a lot of other people’s boxes, describing some new national initiative or model community program or federal initiative of some sort. So there is just a ton going on.
And certainly I think we all know already, base don what we have seen as a committee and what we see in our daily lives, that communities can already do a lot and are already doing a lot with data. Thanks to Community Commons, thanks to county health rankings and roadmaps, thanks to various federal programs, thanks to the Healthy Communities Institute and so on, communities already are using data and doing quite a lot with it.
So I don’t think we need to overcomplicate this by thinking that nothing is happening. Part of this is again trying to understand the range of capacities and ability to act.
There is a lot of momentum these days for a number of reasons around community health needs assessment and improvement. And hopefully Vicki Booth will be joining us at some point. She is I think the program manager of a major CDC initiative on community health needs assessment and improvement.
Another these that came out in these discussions, these interviews, is of course the fact that it is not just about assessment. That is really just the beginning. Par to the purpose, or the entire purpose you might say, of helping communities is to help them not just assess, but move beyond assessment to goal setting, priority setting, taking action, getting results. So again we want to think about the full spectrum of information and its functions. I have a nice quote from Pat Remington about that that I will end this presentation with.
I found that collective impact is another very interesting model that is being pushed by the United Way. There is some interesting potential there. It is a process model that a number of communities are using. So as we think about how to structure our own work it is something else that I think we should be aware of.
And of course there is a great deal, and Lynne Blewett was an interesting source of this since she works a lot on state level activity. State health departments are another potential resource for communities that we mustn’t forget. This committee advises the federal government, but there is a lot happening at the state levels and of course Bruce kind of embodies that for us. I was reminded in our conversation with Jen Lewis from Sonoma County, of some of the extraordinary things that some county health departments are doing in their communities to provide leadership and vision and really to do the kind of community organizing work that one might not always expect from health departments.
Then we did begin to think about resources. I think that probably this will be a major emphasis of the roundtable itself, thinking not just about how to assess community readiness but how to match levels of readiness with particular resources and sources of assistance. What I found in talking with various people, though, is that at this point a lot of resources do already exist. But they are often linked to various programs of funding and it is a little hard to find them.
I started by talking to Susan Queen, who did some work earlier, just after last year’s roundtable, looking at the kind of federal assistance provided, the kind of technical assistance provided by the federal government. She said, well, there is probably quite a lot, but it is very hard to find.
Welcome to Vicki Booth – I was just mentioning you. This is Vicki Booth from CDC. We are glad to have you with us.
MS. BOOTH: I am happy to be here.
MS. KANAAN: We have been talking to Vicki on the phone. She has been an active part of our conference calls, but this is our first chance to meet her, at least mine.
Chris explained to me, for example, that Community Commons has some technical assistance that is available through the web site to everybody, but you get a whole lot more if you are in a funded part of the program. I am sure he can explain more about that later.
In federal programs often things may be as part of grant programs in particular communities, but it is kind of hard to find what is available. So we can continue to try to understand that. And certainly Vicki has made us aware of some really excellent resources through the Community Health Needs Assessment Initiative that she directs.
Again, a theme that we keep coming back to is this is really not just about the data; this is about setting goals and taking action. I had an interesting conversation with Jim Walker about cognitive work analysis as a useful methodology for thinking about who the actors are, what their goals are, what kind of information they need to achieve their goals, and kind of putting information and data in that broader context. So that is just kind of a flag about cognitive work analysis.
In general, people with whom I spoke did think that it would be a good idea for NCVHS to think about creating or helping to develop or spurring the development of a tool for assessing competencies in specific data-related areas. That was an open question as we began, but there seemed to be interest in that idea.
Along with that people had interest in seeing us either think about developing tools to improve readiness, to improve the ability to use data, or resources, or at least pointers to existing resources. As I say, part of the issue is there maybe a lot of things out there but people don’t necessarily know they are there or they are not easy to find. I think I started to say earlier that when Susan Queen looked into trying to find federal technical assistance activities, it was really hard to find them because they are not indexed in any way. It is hard to track them down.
So how could NCVHS help data providers match resources to readiness type or stages or levels? One message that I heard again and again was, let’s keep it simple. Let’s try to make this as clear and simple as we can. A lot of people felt we should not expect communities, and they shouldn’t expect themselves, to be able to do everything on their own. So then it becomes a question to finding access to experts. Identifying where they need help that really is perhaps beyond capacities.
Another theme that I did not include in the bullets, but I think is important, is there may be expertise residing in the community in ways where people might not think to look for it – not necessarily an epidemiologist at the local health department, but perhaps an insurance adjuster or someone in the business community or elsewhere. There was also a lot of interest in trying to help communities mobilize the expertise that they do have in their communities, but perhaps not where they think to look for it.
So again, finally, helping them figure out precisely what they need and where to find it. You see here is a list of some possible resources – I hope that is legible.
Just the kinds of things we talked about. A resource directory, a list of simple pointers, the kind of thing we saw yesterday that the Privacy and Confidentiality Committee is developing in its tool kit. There already are learning communities, for example, through Community Commons. Perhaps the thing to do is facilitate and strengthen existing learning communities to help provide more communication among communities so they can learn from each other.
Online tools – of course whatever tools are developed probably will be mostly on line. More stories – always interesting to see stories, profiles of success, as Pat Remington called them. And then Paul Tang had a very interesting, very concrete idea. I drew him out as someone with a lot of experience in working in advising the government area. He thought what about using the regional extension center network that ONC supports? What about having that adapted for this purpose, or expanded? Or developing a parallel model that is particularly aimed at supporting communities in the population health area? There is a very concrete idea for us to consider.
Another concrete thing that Chris Fulcher proposed or suggested was that if the committee develops a tool of some sort, a self-assessment tool, he suggested that we try testing it or work shopping it in some way on Community Commons group space. So that is a very nice opportunity that would give us access to a lot of people around the country.
Here is the quote from Pat Remington that reminds us of what this is all about: Community leaders and policy makers should always be setting goals, saying where they want to be, and holding themselves accountable for results. I consider it public health malpractice if they don’t.
We got a number of suggestions, as I told you, of people to participate as well as projects. Here is the short list. The Commissioner of Public Health in Chicago, the mayor of Milwaukee, a woman from HRSA – this is kind of a random list. The bold face are specific individuals. I don’t know if you remember the name of the San Diego Public Health Director – I didn’t take time to look it up.
SPEAKER: His name is Tony. I’m still working on the last name.
MS. KANAAN: Tony something. Somebody with Google can find that. Of course all of the interviewees, but also a number of other stories that we heard about. I won’t take time to tell you about them today. But there are a lot of very interesting very specific things happening around the country that we can point to as profiles of success, as Pat called it.
So I have identified some questions, or Bruce and Bill and I have identified some questions for us to focus on today in our discussion. Again, what is our role? What is the committee’s role? What should be the scope of the project? What is the best way for NCVHS or contribute in this area? What should the fall roundtable accomplish? I’ll put these back up in a minute so you can look at them. And then of course some of the specifics, like the date.
Some of the possible topics could be to facilitate, to really zero in on facilitating community heath needs assessment, and possibly in relation to that, collected impact. Advising federal agencies on specific resources, developing resources. Kenyon Crowley talked about the information cycle and the need for this dynamic cycle to flow. He wondered if we should focus the roundtable on how to make the whole cycle flow freely at the community level.
So there are some ideas. I am going to turn it over to Bruce to lead the discussion.
DR. COHEN: Great job, Susan. Great framing work, great basic work for us all. So my job is easy. I am essentially just facilitating the discussion amongst ourselves. I think the key questions are, first of all, I’d like to get feedback on the work Susan has done. And I want to thank everyone who has contributed so far, the key informant interviews from all of you were phenomenal.
I want to get some feedback from everyone about that. I want to talk a little bit about the definition, the concept of community data readiness. Is that our sweet spot? Then I want us to focus on how to translate that concept into a much narrower frame for a beginning roundtable planning.
My final objective, I think, in our conversation this morning is great work is going on in the Privacy Committee around developing a tool. Tomorrow we are going to be focusing on the framework. There are threads – it is almost a helix. I feel the intertwined threads of activity – triple helix, I guess. I would like to figure out how we can integrate and link these activities as we move forward. I don’t expect that to emerge completely this morning, but I think it is something that we all need to keep in mind.
So I would just like to open to up to everyone about feedback on essentially the themes on these questions that Susan has framed for us this morning.
DR. WHITE: Thank you very much for an outstanding presentation. I want to ask a question about – it is only partially rhetorical – about the issue of technical assistance. On the one hand, I thought it was pretty cool. Hey, local insurance adjusters, and relate to that is expanding the scope of regional extension centers.
To what extent to you think, or do other think if you want to chime in, that folks like that are going to be able to effectively provide technical assistance or help develop. I think it is really good to get them engaged as members, but it has been my experience, especially if folks say, well, where are the resources going to come from that are going to support my doing that? Any thoughts about that?
DR. COHEN: I can’t speak for insurance adjusters. I just got back from a meeting where we were engaged in a conversation with NCHS and they were talking about using EIS officers in local health departments to support vital statistics and bureaus of health statistics enterprises. I think CDC and HHS in general – one recommendation could be for us to think more thoughtfully about using public health fellowships — Tamara has mentioned this a couple of times, I think – of resources that exist and repurposing them, targeting community data preparedness. So I think that is a potential fertile avenue for us to explore.
MS. KANAAN: Both Jim and Len had comments along those lines, in this general area. What I had to say came partly from that. I see Jim has his tent up.
DR. WALKER: One of the themes that came up yesterday, and that has already been part of this discussion is, where will we get additional resources? If you think – what would the system look like if we optimized it? It probably would be more resource efficient. It probably wouldn’t depend on finding more resources. So someone predicted in 1910 that, at the current rate of growth, every woman in American would need to be a telephone operator. And we solved that differently.
If you think of the big things that are changing, most of them involve enabling people to do for themselves what 20 or 30 years ago would have been considered a professional’s task.
We are all data wonks. So our solution is to make everybody else a data wonk. How ready are they to be data wonks? Maybe we could flip the question and say what are the questions that they need to answer to improve their community’s health? Do we create a system that starts by saying, okay, your community wants to improve community health. Or you are somebody. It doesn’t matter who you are – the mayor, the governor, in the state public health department, community organizer.
If we started with something like a wizard – okay, in most communities one of these 20 things, or these 20 things, account for the most population-achievable quality adjusted life years. These things are the things that would make the biggest impact in a community’s health, that are impactable. Which one of these does it seem to you, or which ones of these does it seem to you are relevant to your community that you want to address? Then sort of take them to a wizard that provides a set of questions that may need to be asked, survey questionnaires that have been found to be useful for assessing a community with respect to smoke exposure or whatever it is.
So think in terms of creating a system that says we want to make it so that somebody with strong knowledge of their community, with organizational skills, with political power, but not much data wonkishness, could use our set of tools or somebody’s set of tools, and not have to become a data wonk to become an effective changer of community health.
DR. NICHOLS: To piggy back on that, first of all I want to applaud Susan for her incredible choice of key informants. She interviewed a truly outstanding group. Seriously I would like to say being interviewed by you is amazing. It is like talking to a voice on NPR when everybody is calm. It is just wonderful.
But to piggy back on Jim’s very cogent remarks, I go back to one of the slides about nothing works, nothing matters, unless people know what the goals are. All of the examples that I gave to Susan were examples where the community was pretty darned sure what the goals were. They didn’t need an egghead to prove that teaching statistics was significant. They knew that their low birth weight was way wout of whack. They knew that whatever was going on, three 450, which was Nick Maggione – I just looked him up – in San Diego.
So the point is I think, the community in some sense is only going to become a community fro this purpose when somebody recognizes there is a problem. Then they draw upon themselves, and what is amazing about the ahex and everything else is almost every community has got somebody who can actually worry about data validity and things like that. And it seems to me what I would propose to think about is at least get one of those kinds of communities to come in the fall to talk about how they did it. How they came together. How the business man and insurance adjuster analog and the doc in the hospital EG may – but anyway, get one of those people here and then you will see it maybe more vividly, like I have had the privilege of doing.
But I would also suggest a metaphor. Do we want the federal government to create an emergency room to be there on call, ready, when some community comes to them. And then we have the incredible array of experts and technology to throw at them.
Or do we want it to be more special forces, where you are out there looking for stuff that is going on to assess the situation. You might indeed discover something that is true, that a community does not know.
But I submit to you if we do the discovering it is not going to be as powerful as if they are coming looking for an emergency room. And I think that is the kind of metaphor we want to go to. And I totally agree with Jim, there is enough money in the system. It is really about connecting people with the expertise they already have, with the motivation they have because of what is on the ground.
DR. FRANCIS: So a lot of this, which again I think is wonderful, is about readiness to use the data that people have. I don’t know whether it should be on the table – I think this is related to the things that both Jim and Len have both said – when a community has some vague sense that something is up, one question is what kinds of data do you need?
The familiar examples are things like do you have a food desert? But it just might be that the explanation for the low birth weights are levels of air pollution in your community. You might know you are concerned about low birth weights, but not know to ask about air pollution data.
So community data readiness is not just what to do with what you have, but how to think about what to ask for.
A second thing – I don’t know how we get this on the table. There are a lot of data that communities can’t get or there are barriers to communities getting. Some of those issues are proprietary data. So intellectual property questions, trade secrets questions that are increasingly being advanced by health systems about data.
Frankly, another kind of issue is – I know areas where you can’t get decent air pollution data because people don’t want to let you on their property to measure. So what are the barriers to getting the kind of data that might be at least as helpful, if not more helpful, than the data communities already have? Again, I don’t know whether that is anything we want to take on. But those kinds of issues are increasingly going to be big time concerns. A lot of the determinants of health are not the low hanging fruit of where your grocery stores are.
DR. FULCHER: I just want to speak to the work around data readiness. We are engaging an organization called CARRI, a community and regional resilience institute, working around community resilience. It is around preparedness, response and recovery to natural man-made disasters. The wording – it is all in the words, of course – but data readiness resonates in different ways, whereas literacy is really around educating people around where the gaps may be with respect to the number of questions that were raised around data and data use and how you pull data together. I just wanted to comment on that.
Your comment about a wizard is really what we are focusing on with Community Commons. It is how do we accelerate learning? That is really what it is. Often the questions that one community raises have been asked many times, but they have been asked in silos.
So Community Commons and the aspiration of that is really aligning how funders are working with cohorts so people with tags – and we were talking about tags yesterday – are doing search by tags around childhood obesity or third grade reading proficiency or any of these health issues that we are working with in communities, can be searched not just across one funder or a group or CDC or RWJF, et cetera, but with local or with communities that are doing this from the grassroots level.
So being able to search without wizard type approaches, which really looks at the myriad of activities going on.
So with the tags you really get to the stories and the stories are where policy makers or strategic planners can look at it and embedded in the stories are the data or the maps that we framed in Community Commons. So from the policy level, from a person looking at it at a high level, can say let’s drill deeper. What does this mean in our community and in our region? And that is where you pass it on to a different person that may engage Community Commons in a different way, which I think, Susan, you alluded to.
We have four archetypes in Community Commons. It is not just one type of individual that accesses data, but rather you are splitting into four areas, like a strategic planner, a researcher, community action take or policy maker, and I may be wearing multiple hats and maybe a researcher in one instance but a strategic planner in another. It is kind of an unusual fitting, but that is the idea – people are all going to approach data and the depth in different ways.
So I just wanted to really highlight that. I think it is key, focusing on the questions and learning from each other about potential solutions.
DR. MAYS: I think the kinds of issues that Susan has uncovered are really exciting. Across many committees, domains, the whole bit. A couple of comments. One, I agree with a lot of the things that have been said. It is like how do we actually engage? Who do we engage? When we talk about community I think we are back to this issue again. Who is it we are actually trying to target here? Because if you go in some places the level of who doesn’t understand how to do this may be fairly low. You go in some communities and some of this works. It works at the level of they have foundations, they have conveners that actually try and do this.
So it is kind of like what is it that we do best? We do best deliberating. What did we say yesterday? Deliberating, convening and there was one more. I’ll try to think of it.
DR. TANG: Recommending.
DR, MAYS: Okay, great, recommending. So in that vein, I think that at the hearing, whatever we are going to call it, in the fall, we really should be hearing from the federal government a lot, not the community. We already heard the community. We kind of have a sense of what the community’s problems and issues and some of their desires are.
But it is almost like, at this point, let’s hear from the federal government in terms of all the resources, all of the places that actually are supposed to do this, and I think sometimes we don’t know. Like if you go to HRSA or SAMHSA, where they actually really drill down and deal with the community, this is why you see some of the things they have already developed. SAMHSA has been great because it pushes stuff out to the community, it hears from the community quite a bit.
The other group to hear from would be the private foundations. They are doing a lot of this is many laces, which is how do we help our people on the ground. They need to get connected with the government, with all the other resources. Then the third group we want to hear from are these major organizations like Creative Commons, United Way. I think what we do is bring people together, understand the domain of what is going on, and our recommendations go to the Secretary.
So it is like, how do we get the federal government to do this, because once we step out – who was it yesterday? Justine was saying if you put something up on the web site we are responsible for it constantly being updated and stuff. But if it is in the federal government’s hands, they are responsible for constantly doing it and if not, we send a letter again to the Secretary and say how is this project going? Or we go to the Data Council. We have a way to actually make sure that our efforts are maintained as long as we don’t ask for a big budget.
DR. TANG: It has been a really interesting discussion. It started out with community readiness. I like how Jim started talking about we might be asking them to be data wonks. I wonder if we are really asking about community data readiness versus helping them uncover the problems to solve and why?
Normally I am a fan of Jim Collins’ who, then what. You advise boards to talk about the what, not the how. But I think in this case we want to flip that and talk about teaching the how. It is sort of how to fish. But it is how to fish for the goals. I was intrigued by Len’s talk about the ER versus the Special Forces, and I was following it along until he said let’s be the ERs. The problem with the ERs is they show up with the heart attacks and strokes and it is too late to prevent.
DR. NICHOLS: I misspoke if that is what I said. I am not in favor of the ER model. The ER model is we are sitting here waiting for somebody to come. We have all this technology and smart people – no, no, no. I want Special Forces without weapons out there assessing what is going on. They are very good at that.
DR. TANG: You also said that those data folks exist in the community. I am not sure people know how to find them, let alone the data. So in trying to put it all together, I think we need to teach the how. I think your message is the community has to own and understand the problem. We can help them discover what the conclusions and potential recommendations are. But this ownership thing is very key.
So one of the things that I think stymies folks is the lamp post problem. Looking where the light is. We need to teach – in fact we need to teach ourselves how to cast light on where the real problem is. That is one of the services that doesn’t combinate(?) to a community. It doesn’t combinate to even organizations.
Another clue or cue is instead of looking just where the funded service organizations are, like health departments, maybe we need to inventory the self-organized volunteers because those are motivated by a problem to solve. They may not cast it that way, but there is something they are trying to figure out.
So maybe we go look at where the volunteers are, and that actually will be a hint, and apply the tools to how to really uncover the root cause, so that you know the problem you are trying to solve for, and then introduce data as a catalyst and as an assistance for their processes. It still keeps the ownership there.
That was sort of a main theme. Then I want to add one more thing, which I got from the Datapalooza, which was just last week, and it bears on this. There was a company called Purple Binder. What is interesting is they started out with let’s figure out a way to make what is available that the government provides – opendata.gov. – in terms of social serves already funded by federal government. We will make an app for that. But there wasn’t enough actual information about that. What are the problems they actually solved? What languages? Et cetera.
So the only way they could assist with that was staff up with researchers to go find the meaningful information. In other words it was a private sector approach to connecting dots leveraging what is there, but what’s there isn’t sufficient. So that is another aspect, another resource. I agree the resources are there but they are terribly unconnected and we need to go figure out who needs what resources at what time, and it is not just doing four. Sorry for the long windedness, but there is just a lot involved in this that was stimulated by this conversation.
DR. COHEN: Thanks. What we are going to do is run the tents on the table and then take a pause to open up the official meeting and then get back to this conversation.
I won’t spend my half-an-hour here responding to everything I have heard – it is just so stimulating. Just a couple of quick thoughts.
I totally agree with Vickie, we need to have the federal government very much involved in this conversation. When we were framing the idea of readiness, in my mind is having the data providers meet the communities where they are. So this is really not a one-way conversation, this is bi-directional. We need to help communities get a sense of how they can use the data and we need to get the data providers and the data intermediaries understanding how to disseminate the data where communities are. So hopefully the roundtable will have all these folks; the foundations, the communities, and the data providers, talking about integrating leveling the playing the field, integrating their messaging.
I would just make a friendly amendment to Len’s comment. I would prefer barefoot doctors rather than Special Forces, with respect to providing data support. Tells you where I was in the ‘60s. Sandals on the ground rather than boots on the ground. But really having folks integrated into the community is part of the community decision making so that they understand the community’s issue for data rather than being an isolated silo. I think that is a very robust model of trying to get folks attached, either identifying them in the community – because sometimes they are hidden – which was one thing of this conversation, or imbedding them, training to be in communities. Just like physicians in neighborhood health centers.
One other quick comment that has to do with literacy versus readiness. For me, I understand the concerns around emergency preparedness and readiness, but I think of readiness as more aspirational. When I think of literacy, somehow that seems more judgmental to me. I don’t know that we have hit the right word or combination of words. I think that it is important to describe what it is we are really focusing on. I will save my other comments for later.
MR. WHITE: Thank you. In the spirit of being short, I am going to try to offer you, by now, seasoned federal level advice, speaking on what you said, I totally agree, feds shall be there at the table. Do not expect them all to suddenly hold hands at the roundtable and say, we know exactly what we are going to do.
I want to make sure that everybody understands, they should all be there, they should all talk about it, they should hear what else is going on, and expect an internal discussion afterwards.
MR. SOONTHORNSIMA: First thank you for clarifying the point about the focus of this. Connecting the data providers and the community who would be using these things and framing up the issues around the problems we are trying to solve, the methodology, the data, and the tools.
This is more of a question and not a suggestion. Would this include another dimension and that is the community itself? For example, individuals, or are they local population, for whom you are trying to solve the problem, or is that outside of the scope of this? In other words, families, neighborhoods, individuals, and so forth.
DR. COHEN: I guess everything is on the table – community in the broadest sense. But usually communities are represented by community-based organization or coalitions that are connected to the community values and the community desires. But certainly the hope is that these groups actively have participation in their community that represent their interest.
MR. SOONTHORNSIMA: Therefore, is the assumption there that says, the community itself already assumed to be activated. In other words, they are enthused about whatever issues that they are trying to solve? Are they educated or aware of the problems that they are trying to solve as a whole, and whether that ought to be part of the wizard just to help inform, educate, create awareness?
DR. COHEN: Let’s put that question on the bike rack and get back to it.
(The subcommittee adjourned.)