[This Transcript is Unedited]
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Subcommittee on Population Health
September 16, 2013
National Center for Health Statistics
Auditorium A and B
3311 Toledo Road
Hyattsville, MD 20782
P R O C E E D I N G S (3:09 a.m.)
Agenda Item: Welcome
DR. COHEN: Okay, we are ready to begin the subcommittee meeting. I don’t think we need to do anything formal about conflicts. We’ve all done that. And essentially we have about an hour to talk about the Population Health Subcommittee. I thought the discussion was excellent and there were themes that emerged that I want to spend about 15 minutes each on.
One is working a little to specify products and outreach for roundtable dissemination. Second is the technical assistance readiness workgroup. Third is briefly discuss the Solvathon. Fourth is to talk a little bit about Standards and their relationship to Population Health – the Standards committee potential for hearings.
And the last, I am hoping we are able to go through those things relatively rapidly so we can really focus on the Committee’s role and this expanded federal vision because I think that’s where the action is.
And like Larry, I guess, I hesitate to use the analogy with the President and Syria, but I think we’ve been – we’re circling the target. We are ready to pull the trigger here on an action plan to move forward in the Population Health Subcommittee. So I hope the focus of today can be specific, explicit, suggestions about work we can do in all these areas.
MS. MILAM: Bruce, I am noticing, to be able to pull the trigger, staff support is essential and I’m not seeing Kassi or Tammara. Am I missing, do we have them with us?
DR. COHEN: Well, good news bad news. We can just assign them, not that they’re here, they can’t say no. See if Kassi and Tammara are around.
DR. QUEEN: She was here and I think she’s coming back.
DR. COHEN: I am going to turn it over to Sallie and she’s going to talk about the community health product dissemination plan.
MS. MILAM: Sure, I think this has two components. The first is the summary that each of you has a copy of and then the second is drafting the letter. So let’s talk first about the summary.
During our work group call we were going to put together an email to be sent to the committee. Debbie, do you know what the status of that is?
MS. JACKSON: I know we have the transmittal that’s going out to the participants, and we were going to just forward that, use that as that basic to go onto the membership itself.
Mainly I wanted to get those who were involved intimately in the program, in the project, who’ve have gotten something and then have a wider distribution. And I just got kind of bogged down. I plan to get that done before this meeting. So that’s my intention for next week, so that the following week than we can have the wide distribution to the world.
MS. MILAM: No, so that has not gone out. And I think Tammara sent you the feedback tool participants, and they would be in the first wave also.
MS. JACKSON: That is right, that would be the first wave.
MS. MILAM: And so especially folks on the committee can expect to receive an email from Debbie than, with a link to the summary on the website as well as a synopsis. Please send it to your contacts. And the other piece of that, Debbie, I guess would be a feedback loop so that we can maintain a list of where the summary’s gone so we can evaluate have we done our job or do we need to get it to other groups. How should we do that?
MS. JACKSON: Mainly through the dissemination plan that I developed and kind of organized and put together. I’ve just been keeping the tally and the list of who’s gotten what when, as more of accountability so that we can make sure that we’re covering all the bases and cast as wide a net as possible. So I’ll find out how to get that feedback from the membership as they send out their list to their listserves and it will all be compiled under one list.
MS. MILAM: Do you want members as they send it out to their groups to keep a list and then send it to you periodically.
MS. JACKSON: I think that is the most logical way of handling it. And I’ll communicate that as well when we get that out to the membership.
DR. COHEN: So I want to remind you to involve Chris Fulcher. He can’t be here but he contributed enormously and we need to communicate with him in writing for a while right now. So make sure that all of our messages get to him.
DR. NICHOLS: Is that the guy from Missouri? Yes, he was fantastic.
DR. COHEN: I hope for everything that we do – in case he – some of the conversations we might have that Chris can’t be directly involved with – he wants to be actively participating but his hearing is at the point where he can’t dial in and be part of the discussions. So we need to make sure to get him as much material as we can.
MS. MILAM: Anything else on the summary than? And the dissemination plan? Linda, you’re on tap to present it.
MS. KLOSS: I was just thinking about that. So from the standpoint of the key messages that we want to get across to the Data Council, we certainly want to engage them in a discussion on how this helps with their work. But I’m thinking that the slide deck that you used earlier today might need to be reworked to be a little more targeted to who was there and kind of what their vignettes might be, taking to heart the conversation earlier.
MS. MILAM: We might have a GIN (?)00:06:52 deck that would be a good starting point that we used for our June meeting, maybe?
MS. GREENBERG: A major reason to present this at the Data Council is hopefully there will be representatives there of most of the agencies that we’ve been collecting information about and that have different types of technical assistance or resources and to engage with them and see what other suggestions they have and also try to get their support for working with us in that area. So I think those slides are very important. But it some background obviously but I think that would be a major purpose.
MS. KLOSS: Who can work with me on the slide deck because I’m going to have –
MS. KANAAN: Can I make a suggestion also? I think as a complement to this summary it might be useful to have a short bulleted list of key messages or key findings, because this was really never written for the general public or even for an informed public. It was more of an internal document and there are certain things that I would’ve done differently for something that was going to be widely disseminated. And, as I say, at this point, this is what’s going to be disseminated but I think that it might help.
We did a little of that in our cover transmittal letter but that was very, very short. So I think maybe just a page. I think maybe that was what Paul was referring to when he said there’s no executive summary. There is a very short executive summary but it’s kind of cluttered with a list of the participants and things like that.
MS. GREENBERG: Is that something you’re offering to work on?
MS. KANAAN: I would be happy to. Yes, I would like to do that actually.
DR. COHEN: That would be great. If you can work on that, I think there are three slide decks. There was the June slide deck. There was an earlier slide deck and this slide deck. If we could look through those and sort of combine the key slides from those and then maybe add a couple specific examples from communities. The only other piece I would add for the Data Council presentation is, sort of a following up on Marjorie’s suggestion, have an ask attached. Here’s what we would like them to do in terms of helping support this effort or working with us in this effort.
MS. KLOSS: What about the 2011 report? The earlier report, doesn’t that need to go at least as an electronic document? Because we could really make sense in the follow on.
DR. COHEN: I think we could send both of those beforehand.
MS. GREENBERG: When Jim’s office sends out the agenda, well, Susan, you can respond to this better than I can but they could send links to all three of these documents.
MS. KLOSS: By the three, you mean the original report, this report and the – stewardship letter and the one pager –
MS. GREENBERG: Well the one pager you might want to distribute that on the spot. But send links to these documents and then Gabby would you think we’d have copies of the latest one there at the Data Council meeting?
MS. KLOSS: How much time do you think we’ll have? We will have like 10 minutes? I don’t know what –
DR. QUEEN: It is a monthly meeting, 2 hours long. Often there may only be three items on the agenda so it can range from 20 to 30 minutes.
MS. GREENBERG: I would hope that we’d get 30 minutes with maybe 15 for the presentation and discussion – I really appreciate that you’re coming because I think it is important to have a face there – I don’t mean your pretty face of course – but rather than doing it by phone and really try to engage them. Does this resonate with people? Obviously, a lot of them are doing work in this space but are there other things the committee should be working on, are there other people we should be working with? Really, I would hope it would be somewhat interactive.
MS. KLOSS: On logistics, should I work with you, Sue?
DR. QUEEN: Yes.
DR. CORNELIUS: I think while it’s good to have these kind of reference products disseminated, Bruce, I really like your comment about the ask. And I think the piece about the ask needs to be really prominent and up front so folks can kind of balance their time with regards to how to work through all the things in the attachment, as opposed to read the attachments and, by the way, here’s the ask.
MS. GREENBERG: It is probably unlikely that the ask would be in the agenda but it should definitely be in the presentation.
MS. KLOSS: It should be in the first slide, here’s why we’re here.
DR. COHEN: Maybe Vickie Boothe as well, from CDC, would be a good person to talk to about this presentation. She’s done a lot of the indicator work. We talked with her, and I guess Michele Bohm, in their office. Are those the two?
MS. GREENBERG: We engaged them right before the hearing. Maybe you could kind of facilitate that Kassi.
DR. COHEN: Oh, I didn’t see Kassi down there in her bright green. So she can help Susan work with us and work with you. She’s got all the slides.
MS. MILAM: Let’s talk about the letter to the Secretary now. When you look at the summary report on page 12, that’s where you’ll find the discussion for a vision for a modernized federal role. So that’s where we thought we would draw a lot of content for the letter to the Secretary, highlighting our additional follow-on work. We want to just open it up to discussion reactions from the group, good idea? Bad idea? What do you recommend we focus on?
DR. NICHOLS: So I am almost prepared to jump in here but I would rather wait until I know more and I think I’m going to learn more about this technical assistance review group. Because for me to think about what I think we should whisper in the Secretary’s ear, I need to know more about what we sent – I think we ask a bunch of questions. Some work has been done in compiling. That was part of Bruce’s slides.
But for me at least, that’s the first time I’ve seen a lot of those details. So I kind of think I’d rather have that report in a 5 minute version, a little more detail than Bruce could in the talk and then come back to what we would recommend for the Secretary. Because to me that’s exactly the space I want to focus on but I need to know what the department’s actually doing now as opposed to grant programs, the laundry list.
MS. MILAM: Well, Bruce, we could flip the agenda, couldn’t we? And move on to the other topics and then put this at the end?
DR. COHEN: Yes ma’am. So good segue, Len. So the question – so you all saw the presentation. So where do we go from here with this technical workgroup readiness issue? What are our next steps and how do we move this forward?
DR. NICHOLS: But I want to know, Bruce, if you could go back to where it says grant – it starts with grants or something – keep going back, back, there. Is that the first one? Go forward, all right. I got CMHS, I got NIH, I got CDC, Community transformation. I know something about AHRQ.
I know something about – Larry’s told me about NIH’s CTSA. I actually went to the website and looked hard. What I found was collaboration among clinical teams across the country. I didn’t real see community engagement work. What does that mean?
MS. GREENBERG: I think it is engaging the community in this clinical work but you –
DR. NICHOLS: But the community is defined to be the people who are participating in the collaborative, not what I think we mean by community.
MS. MILAM: I think it is community. Larry’s in a better position to answer that.
DR. GREEN: I wish Bob could be here because he could give us the way NCAT’s Central Office is looking at this.
Community engagement, on the NIH CTSA website is all about translational research. The purpose of the program is to close the gaps between what we know and what we do. And the philosophy behind the community engagement component of the CTSA’s is that the old ways of trying to push knowledge out of RCT so that it’s actually used some place, have demonstrably failed.
And that the aspiration is is that by involving community representatives way upstream in the formulation of the questions that are asked, upstream to the methods that are used, upstream into aiding and helping with data collection and management to get answers that are meaningful to communities is worth a try, worth a run.
And there are components of every CTSA now that address that and have an annual meeting that they’ve done five times now. It happened August 22nd and 23rd and that’s probably – the write-ups of those meetings are probably where you’ll get the viewpoint that you’re really looking for about how they’re doing this.
Some of them – they range from an occasional consultation with a focus group of people selected from a target population to talk to somebody to government structures that are balanced between the academic health center and the surrounding neighborhoods or their target communities where they are actually making decisions about resource allocations for research. And also decisions about if we’re going to do that one, we’d better sure as hell do it this way. So there’s quite a spectrum there.
The point I really want to drive home is that NIH has more money than most federal agencies. And they actually have – there’s a connection point at NIH for this type of discussion and it’s actually operating pretty much below the radar screen. It’s not easy to find. You don’t get to it unless you look for it. But it’s highly pertinent and it’s a potent partner.
Community engagement is defined. It’s got technical definitions of what’s involved. The rules for reviewing those parts of the grants have been written and used for half a decade now and its nature is – there’s only two types of people in the United States. Those that are highly skeptical of NIH doing anything useful with the community that’s not related to a rat or a molecule. And the other half are those people who say finally they’re getting religion and now we’ve got to work with them. That was a bit of an exaggeration but you get the point.
DR. FRANCIS: So it seems to me communities, they may not know it but they need technical assistance in a number of ways that aren’t mentioned here. For example, part of data security is technical. And I don’t know whether communities have the capacity or the levels of sophistication that might be needed for certain kinds of appropriate security protections.
De-identification may often involve technical questions that are significant. Another set of technical questions with which communities might want assistance is if datasets are going to be transferred or repurposed, sometimes registries, for example, will put metadata into them to track whether they go in unauthorized directions.
There also may be – I don’t know – but there may be some significant technical questions involved in things like if community members wish to exercise an opt-in or opt-out option with respect to certain kinds of data use, how could you implement that. I guess my question is or my general issue is it seems to me the technical questions are a ton broader than the list that’s up here.
MS. MILAM: It’s my recollection that the communities and the groups that participated didn’t identify gaps in their technical expertise perhaps because they didn’t know that they had them. And that was true the first time with the communities and learning health system.
DR. GREEN: They don’t know what they don’t know.
MS. MILAM: Right, especially in the stewardships, privacy and security areas. But they did identify a number of gaps in some other areas. There was disagreement among some of the participants as to whether they had gaps but there were a number that were identified.
DR. NICHOLS: So it seems like on the one hand, in particular if you go through that set of bullet points on the slide that had all the things the feds are doing now, all the datasets, open data resources. There’s this just cornucopia of data being made available.
And on the other hand, we’ve got communities who have crying need and maybe don’t know what they don’t know. Others of which are very creative and very good at getting the grant programs that exist. So it seems like the feds at the moment created data, made grants available of varying sizes but they’re doing the best they can, but only for the cognoscenti who know how to grab it.
What we want to do, it seems to me, is catalyze a much broader and empower a much broader set of potentials. So I wonder if we might think about, in a letter to the Secretary or that kind of thing, developing a project whereby HHS illustrate through some very carefully chosen examples in a sense what’s possible by connecting some communities that are perhaps resource-rich, resource-poor, a range. But we show the world what’s possible.
Because if you don’t show the world what’s possible, than you just depend upon the great saint or champion out there who happens to write the grant that gets this stuff.
MS. MILAM: And we have these other actors who’ve really filled that role as a facilitators, like Community Commons. So it would be HHS partnering with the intermediaries who would show the world. It’s kind of a new place.
MS. KLOSS: I think that aligns with what feedback we got at the roundtable, that there was a hunger for the case study approach, and a variety, a selected variety. So we’d have some that may have some federal funding, others that are really grassroots initiatives but a range to show just the diversity in the kind of community initiatives that are taking hold.
And I think as we’ve talked about this in the stewardship context, we keep coming back to case studies or organizations that have found a way through issues like date use agreements.
But, not to fragment things, to connect the dots, it may be better to have the case study cover the spectrum, including the stewardship issues rather than case studies about stewardships. And then case studies over here about governance and bringing people together and communication.
DR. COHEN: So one possibility for work that the committee can do is essentially a set of case studies around data use for targeting communities at different levels of readiness as a guide and a model for how they access information. First of all, what information is out there? How they access information and how they use the information? And what tools are available to help them do this? And how they protect it?
MS. KLOSS: And then where there are gaps in those.
MR. BURKE: This reminds me of what we talked about last week where the audience is really in those three categories of beginner, intermediate and advanced, the advanced having the cognoscente ready to write. But the beginners, as well the intermediaries, and the advanced, would all benefit from the case study which is pertinent to their level of development and evolution. And the principles about stewardship can be laced through all three. But it would help them self-identify where they are and I think those groups are best served by understanding where they are rather than us telling them where we think they are.
MS. KLOSS: I thought that was what was most powerful about the 2011 report – was the stories about the communities who were at the Vanguard. So perhaps one of the things we do is go back to our new friends and say identify one or two projects that you’re aware or maybe they’re representing one of those projects, like Rochester. And develop a one-page about them or a standard outline – develop a standard outline that we can then develop case studies from.
MR. SOONTHORNSIMA: I am curious, because there are different ways to kind of tackle this and I think at the end of the day we’re trying to frame things up, whether it’s for a large, small or medium size communities with various problems. Is there a registry of all these projects across the country? And I wonder if maybe that’s a problem – because there isn’t one. Why not? That sort of get to your point, Len? Is looking for a project that’s going to be a staging, if you will, foundation for bringing together.
Maybe that’s the most important first step before you launch a much larger – and again, the goal is twofold. One is to identify, truly identify the diverse set of projects across all the states. Two is trying to identify key components, for example, things that Larry teased out today – one data stewardship as a theme, two bringing diversity of data together and – I forgot what your last one was – convergence, I guess. And when you frame it to create this repository or a registry, frame in such a way that people can volunteer that information and begin to catalogue –
MS. GREENBERG: I want to call on Susan because she was doing – has been in this space and looking for identifying these activities for some time. So where do you see the gaps in people knowing about what’s actually being done? Or whatever you were going to say.
MS. KANAAN: I have to think about that one for a while because there are probably a lot of gaps. But the first thing that came to my mind, Ob, with your question is I suspect there are a number of registries and directories and they’re not necessarily collated and that may be impossible.
But one that came to mind was the Healthy Communities Institute has promising practices database that has more than 2000 stories on fewer than 2000 communities. But there’s a lot of that kind of very particular information out there and in the HCI sites, like Healthy Mendocino, it’s linked to specific indicators, specific community problems, so that’s just one database and I’m sure there are others. Community Comments probably has one. Certainly County Health Rankings and Roadmaps has one. The Foundations have them. Whether there needs to be a mega or meta database I don’t know. Then there’s the question of typology, which is our classification system which gets at the levels of readiness or sophistication or whatever that adds another layer.
I just would like to say one other thing if I may while I have the microphone and that is it seems to me that the committee is partly trying to encourage even the most perhaps sophisticated communities to use a broader range of data and the committee is promoting a particular approach that really encompasses data on determinants of health and now social media data is coming into the picture. So there is a particular perspective on community projects as well as just documenting what’s out there.
DR. QUEEN: I just have to add that the same issue of identifying projects that are relevant to what you’re talking about – the same thing exists within the grant system and the funding opportunities in HHS and across the federal government, even with grants.gov. If you’re trying to find – which initially I was just looking for funding opportunities that provided technical assistance of which there are many – but there is technical assistance, technical support.
When you start looking at things that are specific to the use of data at a community level to address issues, it starts to get very, very limited in the numbers that you’re going to find that are that targeted that aren’t either tied to a specific condition or to a technical assistance center that may be affiliated with a variety of projects. It just becomes very difficult because there’s no single catalogue or way of locating the information.
DR. FRANCIS: Also if I look at something like Healthy Sonoma, let’s say, I can see what the results are of somebody using data but I don’t know how they did it and I also don’t know – so if I’m in a community that wants to emulate them, I don’t know, what do I do? Do I call them up, is that the way I find out how they did it? But I don’t even know who to call and if I have worries about whether I’ve got data that might – Sonoma’s a pretty big county, maybe I’m a smaller area so I’ve got some worries about the kind of protection of particular areas or concerns. Or maybe I don’t even know whether I need to worry about those kinds of things.
It would be neat to have a registry of a lot of good examples but those are good examples of the results. They’re not – just by getting on the website, you don’t know the how-to’s.
DR. CORNELIUS: I am going to spin this back around over to the direction that Len was in. And I really like the paragraph here on page 12 around the actions and I really think that there’s so much we can do but it’s really about the slice of the federal government demonstrating how they can help community.
So I want to go back to what I was picking up from Len’s comment first with the whole data approach of how do you show – it’s the case example, the case example of diversity of communities across the range from the very high expertise versus those who couldn’t turn a button on. But that’s only one part of the discussion.
I keep pointing back to this paragraph because there’s three elements in here and I like the case idea, yet I really think we want to focus on the technical assistance piece, on dissemination, needs assessment. I’ll say that to say I’ve been around the world with databases, registries and all that, we can spend 10, 15 years developing registries.
The issue becomes how do you empower communities, and I think the report is really on point. The community – they don’t know what they know so our job is to provide the example of how it can happen and then let it swell up. I keep thinking about how do you empower the community as opposed to how do we drop it onto the community.
DR. VAUGHAN: That’s a great point and a great observation. What I was going to loop back to Ob’s query about is that there are ways in which data are compiled that you’re not even understanding.
So that they are compilations of data on repositories called GitHub, Dropbox. They’re hidden in Google Analytics. And they are private companies like KeenIO, Mashery, who all track those as part of their market and marketing. And it’s a whole separate ecosystem of analysis, data compilation that happens completely outside of this sphere although it’s deeply related and interrelated with it.
I think that the question of how that might be tapped is a really interesting one and just quietly, there are a number of those companies as private entities, large and small, who would be open to sharing those data as long as their interests and their intellectual property were protected. And so that’s kind of an interesting potential use case for a new firewall for shared information.
DR. GREEN: So I am hearing the following. One is you want to take – you need to state the perspective you want to take in approaching this project. And I think there’s agreement that you want to take the perspective as a community, not a vendor, not an insurance company, not an academic researcher but you want to take the perspective of a community, as we usually mean when we say the word community. You’re talking about a geographic location where people live together and think their future is interdependent. So that’s a big decision. You want to take that perspective.
It sounds to me like you’re a long way down the pike about your method. You want to do a set of case studies. Your audience for the work seems to be the federal government or apparently HHS primarily. And the purpose seems to be to identify technical assistance needs that the federal government could meet if it would, something like that.
What I don’t hear any agreement about whatsoever is what the questions are you want to ask of the case studies. I think you’re bouncing around the table. Each of you have an idea about what your favorite question would be and what it is that you want to learn out of it, but I don’t think we’ve reached agreement about what the questions are we want answers to. I believe that if we could just establish the questions that the committee wants answers to from the case studies you’ve just about got this mapped out.
DR. COHEN: Len, oh I am sorry, Garland.
MS. GREENBERG: I just keep coming back to this idea of the extension service that we’ve sort of knocked around now for some time because I think the thing that struck me the most when the technical assistance work group had its call about a week ago that Susan and Susan commented, Susan Queen over there, did comment on this just a few minutes ago to some degree but – there’s a lot going on out there but there isn’t a lot really in people actually getting resources, technical assistance, grants, whatever, to help them use data, and as I guess Paul would say, using data to solve problems and address problems.
And that’s, there’s a lot about indicators and so I really think, it just seems you’d really need boots on the ground. And I don’t know myself how successful the extension service for helping providers with EHRs. Do you know Bill, whether that’s been effective? Obviously, Vanderbilt wouldn’t have needed it but what about – there are a lot of smaller providers in –
But something like that just seems to really – isn’t with all the money going out there and with all the activities and all the projects, at least we haven’t found, it seems, and we haven’t done an exhaustive search but there’s a few of these groups that have been very effective I think, the Community Commons and that group in the county rankings. But if you want this really to be nationwide, there aren’t local resources to help people with this.
Now hold that thought but there was one other thing I wanted to mention and that is, and I don’t have that report in front of me, and I know when we wrote this summary, we did look at the report from 2011, but since you’re going to the Data Council, are there any recommendations that were made in that report – because there was a whole set of recommendations – that you want – don’t give them 20 or 18, but if there are a few that you really want to call out as part of the ask as – is this something that could be considered, how could this be done, whatever, I think that would be valuable.
This would be your opportunity to meet with these folks and so I really would go back to that report and try to get some consensus in this group as to which one of those recommendations you might really want to call out. And I think they’re related to what we’re talking about and related to that paragraph at the bottom of – you were talking about the paragraph at the bottom of page 12, right? So I did want to mention that as well.
DR. COHEN: So I see two tents up and then I would like to go around the room and have everybody, if they would like, contribute one or two questions that they would like to ask that they think are the key priorities for the case studies or one or two asks that we could ask the Data Council for in terms of where we want the federal government to be moving in this space. So Len, Linda, then we’ll go around the room.
DR. NICHOLS: So I want to pick up on Larry’s laying out where we’re headed and he did it perfectly but at two different times. The first in response to my unformed question about what the CTSA actually does on the ground. How do you get community input and what’s the purpose of it? And if I heard you correctly, it is to get upstream community priorities embedded in the research process and the research choices that are made.
And then in the second statement you talked about how we are pretty far down the pipeline on method. We know we want a case study type report here. So I think what we’re about in the questions is how can we get the community input upstream? I don’t think what we want is to say here are 38 databases, good luck.
And Marjorie, you’re right. I would love to develop an extension service. There ain’t no money for that. So we’ve got to go where we are with what we got.
And what we’ve got is a tremendous outpouring of data resources, not just data but also technology to connect them, but we haven’t yet figured out – and I don’t think the federal government frankly has ever really tried to get input from the local priorities into the upstream process. And that it seems to me is the essence of what we’re after.
MS. KLOSS: My comment follows on to what you’ve said and I agreed with the list that Larry put forward except for your statement that the intended audience is the federal government. I think the intended audience of the case studies is the communities that are interested in getting something off the ground or evaluating where they are at in relation to others. And then based on that, we can impute what the federal government can do to support that.
But I think we should keep our eye on the community as the source of information and the community as the primary audience for this with the federal government as a resource to move that along. I don’t know – that’s the way I look at it. And I think that’s what we heard at the roundtable, that we can’t tell them what to do. This is going to bubble up and how we might help is to support the goals that they identify and move forward.
DR. COHEN: Okay, let’s go around the room and I’d like to hear from one to three suggestions from everyone about who the target should be, what the priorities are for case studies, or for our ask for the Data Council. They are very different questions. We’re all here right now, I’d like to get feedback on each of those while we have the chance.
DR. CORNELIUS: I would just give two thoughts as it relates to case studies and what I wrote out here was one – successful examples of the use of social and other media to disseminate data findings to the local community. I’ll repeat that – successful examples of the use of social and other media to disseminate health findings to the local community.
And I’ll give another one. The other one is successful examples of communities using health data findings to support health planning as a leveraging piece.
The second one was successful examples of community using health data findings to support health planning, it gets to that whole leveraging concept.
DR. FRANCIS: If what we are trying to do is give people resources that are technical or information about how to access them, it seems to me that we should have a kind of short working list of what are some of the kinds of technical resources that communities might want than, and I used my advisably.
Then we should have little stories that illustrate how these techniques were effectively used by a community so that a community that doesn’t know whether or not they want to use it, could actually see an example of it in motion and therefore have a story that gives them a hook as to why they might want to care.
And then third, I think what we ought to do is have the story be ended with and if you need to figure this out, here’s where you go. Now it may be that you go to the feds, it may be that you go somewhere else, but it may be that you look it up in Funk and Wagnall’s, whatever, but if you’re intrigued and you want to try to use this, here’s a where to.
MS. MILAM: We’ve had a lot of discussion around the inadequacies of technical de-identification of identifiable data and really the only way that exists today to protect that is through other mechanisms, like a data use agreement. I’d like to hear where communities are actualizing the data use agreements they sign to receive identifiable data to support their research and their investigation of a community’s issues. They signed and agreed to certain controls in a data use agreement. Do they know how to actualize that into their projects? I think that would be helpful because that addresses the mosaic effect, that addresses all of your other privacy concerns, or it could.
And it would be interesting to see how many people realize that they are governed by those. It technically falls under a principle called accountability in a privacy and security framework. So we could easily tie it back to our stewardship model. But it’s my suspicion that many communities are signing these and not looking at them further. It’s the necessary paperwork, it’s getting shelved and it’s an opportunity for a vehicle that’s already in place that they’re already bound do that might offer us some more protection that currently exists.
DR. SUAREZ: I wanted to highlight two points I guess. One is I think one of the opportunities that we have is to explore new partnerships between public health and the private sector, particularly organizations like health plans and provider systems, to focus on how to implement, how to perform, how to conduct population management analysis. I think there is a lot of opportunities from where I stand, for example, and I know where other health plans are, of sharing experiences with the communities and with public health on population management help. What are some of the techniques and what are some of the priorities that health plans in a community focus on.
Because in reality each health plan has its own priorities and look at how they are going to fulfill those priorities within their community which they refer to as community when in reality it’s of course their member base groups. And so when you look at a region, whether it’s a state or a city or a multicity region, there are many health plans in it. There is public health in it. There are other groups working in it and so I think there is still a lot of fragmentation in terms of how the analysis of the data happens, particularly – and the initiatives around population health are set. And so that’s where I see a great opportunity to explore new partnerships between public health and the private sector.
The other one is advanced data analytics. I think we have an opportunity to again take advantage of some of the work that has been done in the private sector to develop more advanced data analytics for big data analysis and share that and do some technology transfer, if you will, from the private sector to the communities and to public health.
MR. SOONTHORNSIMA: I want to go back to the concept of identifying some key projects as a start. Here’s a thought – this piggybacks from your comment, Marjorie, about the public health communities or the states are really struggling because they’re stretched, they’re stressed. They don’t have enough resources. So I wonder if it’s possible to look at sort of all the public health departments across the country and identify where are some of the common needs around risk, public health agendas, risks, opportunities or issues that they deal with in terms of resource gaps. Related to data, that’s exactly right.
And then begin to identify and align communities that have some of these common agendas and see if we can look for opportunities within that subset of that group, if there are some common themes, ideas, issues around data needs or lack of, diversity of data that they need. And then that way you can apply the framework that the committee has come up with, such as stewardship, such as privacy and security and so forth.
Again, that way – this is again going back to the role of the government, the role of the federal government, this is where they can apply surgically their limited resources as a starting point.
DR. COHEN: I feel compelled to jump in now because I had a similar thing and then we’ll continue going around the room.
It has to do with web-based query systems. The federal government used to support web-based query systems at the state and local level. All communities, whether it’s Healthy Sonoma, Healthy Mendocino or the state or local level, access data indirectly through these web-based data query systems. My ask for the Data Council and for the federal government would be to reinvigorate and help locals and states develop these web-based data query systems.
And not only the data query systems to generate the data and get it out there in play, but also there is software that some states, Garland Land actually was a promoter of this, where essentially you took the local data, communities could input their values of what they were interested in. And then based on essentially a knowledge base of interventions that work, it would use a combination of values, interventions that we know work and your own data, to come up with a list of priorities that you want to begin discussions with.
This marries ease of data collection, the ability for communities to input value and the tools and resources that we know about what work. It doesn’t make the decision but it really helps promote the discussion.
And one other piece is the resources that the federal government has for collecting data, whether it’s the BRFSS or NHIS, the feds have developed the finest resources for survey data collection, administrative data collection, trying to provide some of these simplified data collection tools to communities who want to collect their own data and who want to analyze their data. We need to leverage the resources and expertise that already exist from the feds in these areas.
MS. MILAM: Thanks, Bruce. Before we move on, I’m noting we’re at 10 after 4:00. We were going to start Privacy at 4:00 to 5:00 and then have a joint meeting from 5:00 to 5:30, but we’re in the middle of this discussion. I wonder if it would be appropriate to – and if Privacy is willing – we would go until 4:30 and then Privacy would have 4:30 to 5:30 and then we won’t have a joint.
MS. MILAM: But that means we have about 15 minutes to wrap up the entirety of the subcommittee discussion, is that acceptable?
MS. GREENBERG: So Gabi, who always whenever I just have some random thought, she always is able to present me with the right document or the – so she brought me this report from 2011.
And so I see three here that relate to what we’ve been talking about. Promote the development and use of federal and state web-based data query systems – you probably contributed to that – to provide smaller area data, easy analytics and visualization capabilities. Expand technical assistance, mentoring communities in survey design, data collection, data analysis, et cetera, and the third one is use existing initiatives, such as regional extension centers to provide training, technical assistance, mentoring, blah, blah.
So I would just put on the table those three maybe to be the asks from this report but look at them and see if this is the – it’s the 2011 report, it’s on the website, the first report on the community as a learning system.
Now, I agree with my distinguished colleague from Virginia, that saying we should develop a new extension service of these data people for every community or 10 per state or something. It would go over like a pregnant pole vaulter, in the current environment.
But, based on what we already know is going on, what Walter said about leveraging the private sector, and I’d say profit and not-for-profit and the public sector and what as you said about the feds, et cetera, I still think that it would be a rounding error to try to stand up something like this, a rounding error in the budget for health and health care and disease prevention and health promotion.
And so I think we really need to challenge the Data Council to work with us on coming up with some creative ideas about how this could be done. No – not some new big legislative initiative. But there are resources out there that can be leveraged and that – every hospital we know is supposed to do something in the community.
I think – I just don’t think we should say it can’t be done. Because I don’t really see that without that kind of technical assistance, that this is going to happen.
DR. SUAREZ: I think one of the challenges that we have always had is that there are so many recommendations. I was just looking at yours. That list that you have there, like 10 or 12, and we have several recommendations here. And it seems to me that what is lacking is a focal point within a federal agency to take all those and move it along. There are so many groups inside the federal agencies, and inside HHS, that there is no office for community health data or a center for the advancement of community health data initiatives.
And maybe that is what needs to be established – is an official place that focuses on pursuing and supporting the advancement of use of data by communities. And I just don’t know – I don’t think there is one – maybe there are. Maybe there’s – there’s no coordinated, no central focal point to do that. So maybe that should be the very first point about all this. Because I’m afraid that we keep searching for who is going to do what and how and there’s a lack of resources to do this and that and within the agencies I think there is the ability to pull all this into a single place, have a dedicated staff and resources to do this. And pull it all within what currently exists. So that would be my suggestion is actually make a formal recommendation to establish within the federal agency HHS an office for – whether it’s an office or a standard or whatever we call it for community health data initiatives.
DR. QUEEN: It might be at the Administration for Community Living – ACL – perhaps the Administration for Community Living.
MS. GREENBERG: They have something like this?
DR. QUEEN: I don’t know. There are a lot of community grants that cross in the river of agencies but –
MS. GREENBERG: If Jim were here, he would say that the committee typically doesn’t and shouldn’t make recommendations to the department about how it should be organized. Of course, probably the committee’s most famous recommendation in the last 20 years was that there should be an Office of a National Coordinator. Be careful what you ask for – no. But then it took a while to get that into – you can create something but it has to be funded.
So I don’t know, I have mixed feelings about getting to that level of detail. But there does need to be – I think your point is well taken. That if this is everybody’s responsibility but nobody’s – I wouldn’t say you put everything in there because you couldn’t but some kind of really serious focal –
DR. COHEN: So we have about 10 minutes and we’ve got five or six more people who want to speak so let’s try to go around and make sure everybody has a chance.
MS. MILAM: We also have the Solvathon. Are we going to take that off the table today?
DR. COHEN: Yes, we can deal with the Solvathon. We’ll solve the Solvathon tomorrow. Vickie.
DR. MAYS: Do I need to say I have no conflicts first? Okay. Vickie Mays, University of California and I have no conflicts.
One of the things that I want to pick up on which Walter said is that I think that this notion of having some central place is critical because if you look at the efforts that we’re engaged in, it’s like to go to the different parts of the federal government, find out what each one does, and I think what we’re seeing is budget cuts. It really is – NCHS used to do all this training. NCHS was very responsible for its data.
I think what we’re doing is stepping in this hole of the fact that NCHS used to do a lot of training. It had a program in terms of the development of small area estimation. It had lots of different things. And I think we’re forgetting that a good justification here is the loss of what’s no longer there, which at least in NCHS was present.
So the question would be, for me, is can we go to the Data Council and say a couple of things. One, that what you want to do is – I guess I’m less into technical assistance because I think it always gets cut, and I’m more into policies. And whether or not we could ask the Data Council to look at policies that each time a dataset of a certain size or cost or something is developed that there are a set of policies of how it goes out.
For those of us who sit around the table and have NIH funding, anything that we get now that’s over $500,000 we have to develop a public dataset. Our problem is we don’t have a lot of guidance and expertise and we’re each all doing it kind of whatever way we think is best to do it within our own environment.
So if the Data Council actually did that, I think it would make a big difference.
The second thing is to ask the question in this of bang for the buck, because I think we keep saying communities and sometimes we’re thinking of very small communities and those are here today and gone tomorrow, especially with budget cuts. But we’re not thinking about the ones enough that the federal government is actually responsible for, like the Federally Qualified Health Centers, like it’s AHACS, it’s RHACS. There’s a bunch of programs that if you impacted those programs, their mission rolls out to those smaller groups.
So I’d almost like to get us to kind of pull back from the smaller groups and to look at if the federal government is our constituency than we need to help them roll out this data being more accessible through the means that they already have as opposed to asking them to kind of dip down to those that they actually have not the strongest relationships with. So that would be my wish and ask.
MR. BURKE: Two questions related for the community entity, what data and support would you need to further improve your community’s health status? That’s pretty basic and fundamental.
And for the Data Council, what support are you prepared to offer communities at different levels of evolution to support or improve their effectiveness.
DR. NICHOLS: Very good, Jack. I would like to go on record saying Walter’s right. We ought to recommend an office but Marjorie’s right, they probably won’t like that much.
So what I would say is let’s define the functions that ought to be performed and let God decide.
But what I want to say right now is what we should do between now and November. I don’t think we can do it by October but I’m for trying. And that is, each of us, everybody, especially staff, should come up with a very concrete example of a utilization of a specific data resource that’s in Bruce’s handout. And our own little stories, whatever we’ve got, we all know lots of stuff that are piecemeal answers here.
But I think it is in many ways maybe we should recommend it should be incumbent on HHS to go find users and come back and tell the stories. But in the meantime, let’s us come up with what we would recommend as examples of applications. Because I bet between us we know a lot that’s gone on around the country.
DR. STEAD: After listening to this, I’m still having trouble knowing where you’re sitting on two ends of a spectrum. I think that everything we’ve learned in things like Datapalooza and so forth, are that it’s very easy to take one piece of data and with geopositioning or whatever, repurpose it for something that’s either partly interesting, partly useful but is not part of other things that are put together and doesn’t really inform root cause of what the problem is.
So we can do a lot of that – so being able to – so showing people where food deserts are – there are a lot of things that would be useful for community health that are no more complicated than one source put together with geopositioning. And I would build some examples of that and keep that really simple.
At the other end of the spectrum, it is really hard if you want to have a community that’s using data to truly make decisions and to understand cause than they’ve got to have people that really understand how you define problems, what the biases are in each of the data sources, the fact that you’ve actually got to keep those data sources separate as you assemble their interpretation for a purpose. And you might could work one of those latter examples in an attempt to get the methods with – from our perch really focusing on the methods of the data, but you could do a whole bunch of the others.
And in this conversation I’m at least having trouble knowing whether we’re keeping those two very ends of the spectrum really apart. Because if you do, I think you could be quite successful.
DR. COHEN: Two more quick comments.
MS. VAUGHAN: Just a quick comment beyond the scope with the truncated time. I just wanted to maybe bring it back to the community and there’s a lot of wisdom within the communities and I was going to brag about one of my favorite local examples. This is the first draft of the San Francisco Food Security Task Force. And this is largely based on our shared data. It’s public data. It’s federal. It’s state. It’s county, city. It is also combined in reconciling the datasets of nonprofit, principally nonprofit organizations and some for-profit organizations.
And we weren’t so much organized, are not so much organized around the data per se but we have these questions. We have these issues. We have we’re seeking these solutions and how can the data help us inform those.
And people come to it with a fair amount of – a lot of savvy about their community and different degrees of savvy about the data per se. But working through them able to come up with what’s going to be a really terrific report.
MS. KLOSS: I am thinking that on October 9th the Data Council’s probably got a lot of things on their radar. And that probably the best we could hope for from a 30 minute discussion is to bring forward what – an overview of the work that we’ve done, advance our definition for community which stood up in this last session where people were saying well, what do you mean by committee – and we used that definition and it resonated.
And then begin to give some examples of the disconnect between the effective change going on at the community level, and the fact that none of our data is community based. It is county based. That came through loud and clear at the last meeting, that we have a disconnect between all the data being produced at the county or the state or some other level and not really useful for this.
So I can see us using this time to raise awareness and begin a dialogue but I wouldn’t be comfortable going in and outlining 20 recommendations given – so I think we have to be really careful and it probably is a positioning session. And I think if we engage the Data Council, it might be very useful to ask them what the committee can do next that would be most helpful to them, assuming they – we can give some really great examples of good work on the ground, how we’re trying to support this. The breadth of ideas we’ve come up with but we know we have to narrow it to what’s useful. So I’m kind of thinking that might be a way to approach this discussion.
MS. GREENBERG: I think if we did this one pager that would be helpful. And certainly in the past when the committee has presented a report to the Data Council – and we can see if Jim would be willing to do this – but than he asked – we have some discussion, but as you said, it’s like 30 minutes of the whole thing.
Ask the representatives to get back to either to him or to the co-chairs of the Data Council or whatever and give them two or three weeks, a month, whatever, but to comment on not all of the recommendations but maybe the ones that we feel are the most critical or the observations that are the most critical. And if they’re asked to it by the Data Council, they generally will do that. And that might be a way to keep the conversation going.
MS. KLOSS: But the notion of community health, use of data at the community level, is really the main message for this and raising awareness.
MS. GREENBERG: It is not what they normally talk about. Okay, I think we are at the 4:25 mark.
DR. COHEN: Thank you all.
(Whereupon, the subcommittee adjourned at 4:26 p.m.)