[This Transcript is Unedited]
Department of Health and Human Services
National Committee on Vital and Health Statistics
Subcommittee on Population Health
December 3, 2014
U.S. Department of Health and Human Services
HHH Building, Room 705-A
200 Independence Avenue, NW
P R O C E E D I N G S (8:00 a.m.)
DR. COHEN: Let’s go around and introduce ourselves. The good news is we have a small group here so we’ll have plenty of time for discussion. I’m Bruce Cohen, co-chair of the Population Health Subcommittee, member of the full Committee, no conflicts.
DR. STEAD: Bill Stead, Vanderbilt, co-chair of the Population Health Subcommittee, member of the full Committee, no conflicts.
DR. NICHOLS: Len Nichols, George Mason University, member of the full Committee, Population Health Subcommittee, no conflicts.
DR. VAUGHAN: Leah Vaughan, Director of Health Policy Group, member of the Working Group, no conflicts.
DR. CORNELIUS: Llewellyn Cornelius, University of Maryland School of Social Work, member of the full Committee and Population Health Subcommittee, no conflicts.
MS. KANAAN: Susan Kanaan, writer for the Committee.
MS. JACKSON: Debbie Jackson, National Center for Health Statistics, acting executive secretary for the National Committee.
MS. GOSS: Alix Goss, Pennsylvania eHealth Partnership Authority, member of the Standards Subcommittee, member of the full Committee, member of the framework work group and no conflicts.
MS. WILLIAMSON: Michelle Williamson, CDC’s National Center for Health Statistics.
MS. BEBEE: Suzie Bebee, ASPE.
MS. JONES: Katherine Jones, National Center for Health Statistics, staff to the Committee.
MS. COOPER: Nicole Cooper, staff to the Committee.
DR. SUAREZ: I should probably introduce myself formally. I’m Walter Suarez, member of the full Committee, co-chair of the Standards Subcommittee, member of the Population Health Subcommittee.
Thank you, Walter. There are several other people coming. I know Dr. Mays is here and Linda Kloss is also here. They are members of the full Committee and they have no conflicts. Could you please introduce yourself if you haven’t introduced yourself already?
DR. GREEN: Larry Green, University of Colorado, no conflicts, no committee.
DR. JEAN PAUL: This is Tammara Jean Paul, NCHS, CDC, staff to Population Health.
DR. COHEN: Okay. So we’re going to try to do four things this morning. I also want to recognize Vicky Booth who can’t be with us today. She’s been staff and an incredible contributor to the Population Health Subcommittee. She broke her pelvis and she is recovering in Atlanta and she will be rejoining us at our next meetings. So Vickie, if you’re in the ether world we send our best to you, quick recovery. There she is great. Great.
The four things we want to do today are review the roundtable for folks who weren’t at the roundtable or who aren’t quite up-to-date on the roundtable which was a phenomenal event in late October. We want to discuss mounting a community of practice. We also want to discuss preparing a letter for the Secretary and finally we’ll get to our work plan for this coming year.
I’ll start off and then Bill will take over. So if you can follow your slides. Slide two is just a context for our work. And actually on the Population Health Subcommittee call, I think it was last week, we had an interesting discussion about the definition of community. As you can all see our definition of community is not only on this slide but also on this wonderful poster.
We discussed expanding – we moved in two directions in our discussion of community. We won’t have time to do that this morning but I think some of the issues that were discussed need to be addressed. We need to expand the definition to make sure that the focus is on providing data to communities while at the same time making sure people are comfortable with the fact that our definition of community includes those that are hard to reach or who might be disenfranchised in the process but are still part of groups although they might not feel themselves to be.
Our attempt here is to develop a homogenous definition of community. We need to recognize even within the definition of community that I think is very good there might be some folks or groups of folks that are missed. We’ll get to that in more detail at some point but not right now.
So the purpose of the roundtable was pretty clear. I think the true value of the roundtable was getting data connectors added to the conversation between data providers and the community. And for the roundtable we really focused on government data suppliers and as our conversation progresses we certainly plan to expand that to include health care data providers as well.
Before we began the roundtable, we put together a feedback tool and I want to thank Tammara for her incredible work and Vickie Boothe for her work helping organize this instrument and getting responses. In your handout I think are or in a separate handout there was a detailed set of slides summarizing the feedback tool findings. One of the learnings from the roundtable was we got excellent feedback on the feedback and we plan to continue to use that as part of the community of practice to expand our ability to get input from a variety of different organizations.
So some of the major findings were that communities are consistent in their view that there are data gaps, particularly in the less disease focused parameters that communities are interested in. Understanding community assets, folks want more local data and respondents want the feds to allow greater access to data.
It’s almost a paradox. We heard the message that people want more data but it’s actually different data, not necessarily more. And the data, as you will see, one of the focuses of the discussion are providing communities with data that are more actionable than the information that communities receive now.
Here’s just a list of some of the participants. We had a broad range of participants and again I think we had a fantastic representation from HHS and government data suppliers. It was great to get the feedback from all those folks who were in the room.
So here are some summary points. Clearly communities are operating cross-sectorally and we need to when we think about data think about all the different streams of data from different sectors. Traditionally HHS data providers have focused on health or disease but we need to expand our world view to focus on community wellbeing, which includes greater operationalizing social determinants.
There were some strategic foci as well. Communities when they think about improving the quality of life in communities are certainly working towards equity. There are lots of different directions or directives that communities are responding to, whether its community health needs assessments that are proposed or required by the IRS for nonprofit hospitals, developing community health improvement plans.
There’s lot of activity going on in local government about accreditation. So there are lots of – I guess there’s a real window of opportunity to get communities more involved in discussions and decision making that requires access to good public health data.
Communities also seem to be developing a more strategic approach from isolated programs to broader policy focus. And this includes understanding the return on investment to help make their case to decision makers and funders.
What do communities need? As I mentioned before, communities need actionable data, not just more data. And the roundtable focused on more general ideas although a couple issues kept coming up, substance abuse and Dr. Green’s favorite, mental health data. And the idea of helping communities providing technical assistance seems like a potential really sweet spot for NCVHS. This doesn’t necessarily require more resources from government but just allocating resources differently to provide that level of technical assistance. And there were several ideas about how to do that.
So there were several points about data. Presentation is the key. I think the idea was mentioned several times that the government provides volumes and volumes of data but it’s not really packaged or disseminated in a way that’s useful to communities. And there were several examples of presentations of data that really resonated with communities. It’s a combination of stories and quantitative information that really make the point about what the priorities and issues in communities are.
We also needed to focus – several folks brought up the issue about helping communities better understand or develop techniques to address some of the issues that we’ve been discussing as learning systems. What’s the responsibility of the federal government to provide small area data when the focus has been nationwide or at the state level and communities need county level or neighborhood level data? How can government better use its resources to provide technical support? And timeliness is a huge issue. The data don’t seem actionable to many communities when we’re talking about information from 4 or 5 years ago.
The good news is we’re not starting at ground zero. There’s lots of work going on that we can build on and the focus really is just sort of re-orienting some of our activities to address issues of collective impact and begin the conversation that involves the data intermediaries as well as the data providers in communities. So a part of the issue is not providing more data but being more thoughtful about the organization and alignment of resources.
So four priority areas emerged from our conversations. First, we need to promote community data literacy through listening, technical assistance and strong data presentation. I want to thank Leah for her insightful comments that helped focus a lot of the discussion around data literacy. We’ve had several discussions after the meeting about what we really mean about community data literacy and I think this year’s work will involve exploring exactly what we mean by community data literacy and what the National Committee can do to promote this concept.
DR. STEAD: Could I just introduce this? We had a very good conversation at lunch yesterday around the degree to which we came out of the roundtable with appreciating the opportunity for a pivot in how we think about data literacy or is this really simply a relatively gentle continuum of progress. From my perch as I’ve listened to our conversations about data literacy, it’s been what can we do or what can the federal government do to give communities the capabilities to deal with data that is hard to deal with.
I think the pivot that I heard in the roundtable, and I may have reached too far, but that pivot is that we’re asking how we embed the voice of the community directly in the thinking about, in particular, how data is presented so that we make the providers community data literate more so than making the communities data literate from the perspective of providers and that then the data would be in a form that they could work with to make decisions without them having to really understand the nuts and bolts of all the data.
And I used in the conversation yesterday the computer assisted cars that tell me when something’s in my blind spot or more importantly the adaptive cruise control that just makes the thing go the right speeds, slow down or speed up, without me knowing how it’s calculating that or anything else, is an example of getting it in a form that is so usable for its purpose that the community can stay focused on how we use this for decisions and tracking progress, less on the nuts and bolts.
So as we talk about the data literacy work coming up we’ll really want to sort of understand where on that spectrum are we thinking about as the next step in what is clearly a continuum any way you cut it.
DR. COHEN: I am going to speed through the next couple slides because I really want to get feedback from all the folks here and we’ll continue to discuss these as we move forward, particularly with respect to our work plan. But some of the other key learnings, the core sentinel indicators for local health and wellbeing. Bill will talk a little more about some of the IOM work. There’s been ONC work.
The issue is there are too many core indicators and communities have no idea how to choose among them. It’s not that there aren’t indicators. We need to provide some guidance so communities understand what to use or what the differences are in the plethora of indicators.
The third bullet here is in a similar vein, we need to align platforms and support. We’ve got healthdata.gov. We’ve got Community Commons. We’ve got the Indicator Warehouse. We’ve got Healthy People. We’ve got County Health Rankings. We have the work of NQF. There’s so much out there, if I were a community coalition or a community member, I would throw up my hands not knowing where to go. So our role is helping communities I guess develop a roadmap through the morass or getting all these folks to align their efforts so communities can better use the information.
So we talked about moving forward this year and coming years with four areas of action. First establishing a community of practice to continue the conversation and Chris Fulcher, who can’t be here today, volunteered using Community Commons as a platform that would allow us to continue the conversation and we definitely want to explore that with him.
We’re developing recommendations for the Secretary for a February letter, which we’ll get into in a second, and we’re going to – and part of our work plan, and Bill will discuss this, will be a roundtable on community data literacy and we want to figure out how to facilitate this platform alignment that I mentioned before and Bill is certainly leading this effort in parallel around developing a framework for better understanding data communities can use.
So let me just briefly go through the general themes that we thought would be valuable for a letter to the Secretary and then maybe I’ll stop and give folks a chance to respond before we get to your piece, Bill?
DR. STEAD: Yes, and what we are hoping to do is discuss possible findings, which are the themes, and recommendations at a time when it’s a list. There’s not a lot of verbiage to it. And what we’re really trying to engage your thinking with at this point, is what’s the right list and we would like to keep it relatively short?
Then we can refine that list in this conversation this morning. We will then bring back to you, we’ll work it as a subcommittee and bring it back to the Full Committee, the verbiage in advance of the February meeting. We’re trying to tee this up at this point without wordsmithing it.
DR. COHEN: The other critical piece is after listening to the conversation yesterday, it’s clear that we need to do more work to better understand what’s already going on in the federal government. We heard yesterday examples of activities that are going on throughout the department that are certainly relevant to our recommendations.
We want to provide support for ongoing activities and certainly we don’t want to duplicate efforts that already exist. So one of the pieces that’s missing here is I think the outreach we need to do to figure out what’s already going on in the department with respect to some of these activities.
So here are our themes. We need to emphasize the federal role in helping communities meet their data needs and provide technical assistance and we need to celebrate and support the initiatives already underway. And we need to recognize the rush to data liberation does have its downside and focus more on understanding actionable data. Somehow we need to have data providers, and we’re talking about federal data providers, build in and heed community voices when they provide data or release data.
Data presentation, I think the feds have focused more on getting the bits and variables out without really stepping back to consider strategies for dissemination that would be a lot more effective. We talked about strategies to provide this data support. We heard examples from SAMHSA of the kind of technical support. We had suggestions. We’ve already been talking about sort of the agricultural extension service model.
The regional offices have never I think focused HHS regional offices on providing data support throughout their region. That might be a strategic way to use an existing system that’s already present. The concept of data concierges to help locals develop. There’s all these activities already going on or mandated.
The community health needs assessments that are required by the IRS. Figuring out how to align that activity with community needs and integrating federal spending priorities which will really focus hospitals on working with communities to really create a synergy. We mentioned also this standard datasets, standard variable definitions to try to help communities understand the differences and deal with the proliferation of information.
And we also recognized the importance of, as more data get used by communities, we need to integrate the findings of the toolkit and the privacy approach. This is an area where communities have not focused but as we expand the use of data this would become more important.
There’s activity going on around getting data to communities more quickly and more currently, that concept of providing provisional data. The idea of establishing longer term grants so communities can develop plans that are more sustainable rather than knowing that their time horizon is 2 to 3 years and then they need to focus really on longer-term institutionalized changes.
I think that’s it. So we’ve got a lot of potential ideas for a letter to the Secretary around general things. And again, this is not going to be the only letter or the only report that’s an outcome of the roundtable. We see this roundtable as one stop on the journey of communities as learning systems and we really want to continue the momentum of this journey. So I’ll stop here for questions, comments and feedback on the roundtable or suggestions about communicating with the Secretary.
DR. STEAD: I think in particular, if you will look at page seven, it’s got the potential recommendations listed in two slides. And I think in addition to answering whatever questions have about the roundtable, what we would really like to know is whether this looks like the set of recommendations that we know enough to know that we should make now and, if so, we can then put words around them.
But we need to know are there key things that should be dropped from this list or added. But I think probably mainly in terms of something for February if it’s dropped, if we’re overreaching and that would be very helpful to know.
MS. KLOSS: Thank you for the excellent summary. I’ve been thinking about this in the context of the toolkit and I think the same issue will arise as these recommendations are crafted. The Committee can recommend or even frame technical assistance and tools but how do they get maintained and where do they live.
And so I’m wondering if one of the issues to be addressed is how this focus on helping communities gets sustained in the departmental structure. And I know you said one of the areas for looking at further is who is doing what but it almost seems like it’s not going to rise to priority if it doesn’t have a home. And the Committee can just do so much in terms of producing products but they have to be somebody’s day job. And so I think there’s an organizational dimension to the recommendations that maybe we need to chew on a little bit.
DR. COHEN: Thanks, that is very valuable. I think Dr. Richards talked about training in place. And that resonated with me yesterday as a way of providing technical assistance that’s sustainable at the community level because it expands communities’ abilities to do the things that we want. But I think you’re absolutely right. Thanks.
MS. GOSS: Thank you. I’m sorry I missed the roundtable. It sounds like it was an exciting couple of days of conversation and I noted on the earlier slides reference about the mental health and substance abuse data and really needing more information from those service areas, so to speak.
And from a state perspective, I know that we’re grappling with trying to give providers a holistic view of a patient because of the provisions for additional consents and protections around mental health and substance abuse. We also have it with HIV.
But in particular to this conversation, I’m curious as to how the data supplier of SAMHSA interacted in the conversation and what kind of – I’m assuming it’s de-identified information – but getting your arms around that data and getting it released and lots of aspects to how communities and people feel about that data and what can happen in the release of it and the related stigma.
And so I didn’t really notice anything in the potential recommendations, unless I’m missing it, that really speaks to that sort of super-protected data and if you really want to take care of a community you need to know about it holistically but there’s a lot of issues when you carve out those two topics. So how does – it seems like it got dropped off the list or maybe I’m missing something.
DR. COHEN: Do you want to respond?
DR. STEAD: I can try. It’s a very good question. I think it’s a matter of what recommendations do we understand well enough that we could make now, and which ones are the subject for additional hearings or work going forward that will in turn result in recommendations. So that’s one frame that we need your help thinking about.
One of the things that emerged as one of the big ticket items in the key four points, and one of the things that is in the work plan that ties to the framework, is how do the data intermediaries and the suppliers go about aligning platforms. That’s as far as we got. That might provide a common frame for how one both puts information in a form which it could provide a more holistic view and accesses it. That is far beyond where we got in this other than that needed to be done.
So I think the thing we’ve got to work through is which part of this can we do from the roundtable we had and the previous work NCVHS has done, which recommendations could be ready for primetime now. And which need more work. And I think that’s the teeter-totter.
DR. COHEN: We did hear from SAMHSA and you’re right, there’s a general sense in communities that they need more information about community wellbeing at the individual level and at the community level and this is pervasive through all communities and all planning processes that I’ve been involved with. There is some level of stress or dysfunction that’s caused but isn’t really measured well. So we’re still grappling with that and we don’t plan to include it in our initial set of recommendations but it raises enormous issues.
MS. GOSS: It really does. And it’s an overlap with some of the other subcommittee works but especially it’s an overlap with some of the other federal agencies in the forthcoming regulations. There’s been a lot of discussion in the last year about what should we do with 42 CFR Part 2 and that’s why I was very curious, or happy to see SAMHSA was at the table, but curious to see where they were going to go with it.
DR. COHEN: I think this is on the work plan down the road but not immediately. I’m just going to go around the table. Larry, do you have anything that you’d like to add?
DR. GREEN: No, but I want to get this done if you can by this weekend.
DR. COHEN: Thank you for those kind words.
DR. MAYS: I am going to beat a dead horse unfortunately because I think it’s very important for your recommendations and that is going back to this notion of community. Leslie raised it, I raised it. And I know you want to put it to the side but when I look at this, it’s like what community are you really talking about?
The community that you’re really dealing with is not the everyday consumer who wants this information but you’re really dealing with the community of data people. And I think when you say institutionalize and heed community voices, it’s like I think the word community needs to be modified by something. Because otherwise I think you’re open to criticism.
And I know in the data work group I can’t remember, I think we were on a conference call or something, and I remember Jim said something that kind of stuck with me which is about knowing which of the communities we are realistically going to be able to do certain things for. So in the work group, that’s part of why I’ve done this kind of meaningful use of different kinds of community and asking some of the data suppliers which group are you really going to be able to make changes for and reach.
So it’s like institutionalize and heed community data user voices or community data develop voices or something like that. So I’m going to leave that out there because I know that we don’t seem to be able to settle it but I just don’t think making the group of the community think that their voices are really going to be integrated without a very expensive and complex process is going to get us in a little bit of trouble.
I want to go to the mental health data because not only did Alix bring up a very critical point about what you can and can’t do but the other thing is it really is an instance where more is the issue. Because it’s not – we don’t have the same amount of mental health data collected that we have in terms of physical health data.
So the ability, for instance, to know in a state, the prevalence of diagnosed disorders that you’ll get depression, you may get a few things but there are other things you won’t get. So I think with that data – substance abuse I think we do have – but in terms of mental health data and if we started talking about behavioral health in its full complement, we don’t have it. So I want to make an exception to the rule that there more is probably really what people need.
Then I kind of want to talk about this notion. Because some of these recommendations I really feel like if we had a different set of people at the table, we’d have a different sense about them. So, for example, I’ve always advocated for Pop to also have more of the federal agencies that work with the community. So the notion of saying things like institutionalize and heed community voices – there were a couple of others, I can’t find them – develop avenues of technical support, some of the agencies actually do this.
So I think it’s important that if we’re going to say something to the Secretary that what we do is know what really is going on. So I think there’s a little bit of work before the letter to go to the Secretary. And it’s almost like it’s what you were saying, Linda, it’s an interesting thing is that some of these recommendations almost need to say not that this is the recommendation but this agency needs to do this again. NCHS used to do many of these things but cutbacks means they don’t do them anymore.
So, for example, NCHS has been very active in the state data things that are going on – I’m sorry Bob isn’t here, Bob Kaplan because NIH also was helping. There is a federation group – and the reason I know it is because of CHIS in which they are going around and there are different states that are doing CHIS like surveys. And they’ve been trying to get funding and become an organization almost.
But the problem is it’s not anybody’s day job to do it. So NCHS used to do this or NCHS could do this. So it may be rather than just saying this is a good idea, we need to say, institute support for the federal government major statistical agency to lead this.
Maybe we need to say is develop avenues of technical support. Maybe we need to say AHRQ and NIH need to develop the technical skills through the development of research to support guidance and direction in how to handle data for small area estimations, blah, blah, blah. So that was coming up yesterday when we were kind of pointing out the research issue. Bob’s already said that that’s something that AHRQ is going to do.
So for us to recommend it very specifically to have a home, it helps him in terms of if that’s his agenda but it helps somebody for the Secretary to give it to some body as opposed to it’s a good idea. It’s going to go to the Data Council and the Data Council doesn’t have the capacity to do that. But if we make the linkages I think we stand a better chance of it actually occurring.
MS. KLOSS: Can I just piggyback onto that, Vickie, because you did a nice job articulating what I was trying to say, thank you. But I think back to the letter that we wrote to the Secretary at the time we developed the stewardship framework. And it included recommendations like this, the department should develop toolkits and resources and things like that.
And now a couple years later when we step back and look at it, it just wasn’t specific enough. And that work hasn’t gotten institutionalized and probably won’t be based on that kind of recommendation. So I do think we need to probably either keep the recommendations at a new conceptual frame way of thinking this and then some suggestions on how to operationalize it.
DR. STEAD: I am still trying to figure out what NCVHS can and should do versus what has to be done in some other way. Having just lived through this IOM Committee, which I’ll report on in a little bit, there you had a group of 13 people with three full time staff working for 14 months to generate one report which yes, it has a handful of recommendations but if you then look at chapter six, it has a table that basically says who can do what to implement each of these pieces.
To do that, we had to do a lot of work that as far as I know NCVHS is not and has never been staffed to do. And so the balance between how do we paint the high level picture of what needs to be done as we move forward and the detailed traction which may take AHRQ, it may take IOM, it may take Lord knows what. I don’t know what the balance is. So I think as we struggle with this we’ve got to keep that lens in mind.
DR. GREEN: Well, I think you’ve got solid, solid evidence that this is not going to happen because the country is missing a complete infrastructure for the information age to get this done. And that’s the point that Vickie’s making, in my view. And I don’t think you have to do any more staffing or any more studies. You’ve already published it. We’ve already written that this is the case. So I think that can be a useful framing for this next letter.
You don’t have to solve the infrastructure problem here at NCVHS but one man’s view is it is not recognized – it’s hard to see what does not exist. So everyone’s running around making lots of recommendations about the information age and the new role and where are we going to get it and it’s no one’s job to get us there. We’re so fragmented. We’re so fractured. The government has agencies, the states have agencies. The universities have departments and the people are waiting.
And we’re not geared up to be able to do this. It’s just a fact staring us in the face. I would quit arguing about it here and just declare it so. Make it someone else’s problem to refute the assertion that it needs to be someone’s job to take advantage of the wonderful opportunities that communities have right now. I don’t think you ought to spend a lot of time on this anymore. I really don’t. I think you’re done.
DR. COHEN: Everybody is going to have a chance to talk. I heard a couple things that I really wanted to respond to. The more I think about it, I see this as a two-step process where we’re providing the Secretary with general overview and making it clear that we’re going to follow it up with more specific suggestions.
But I think it’s important that the Secretary be aware that here are the issues that we uncovered the department needs to handle, we will be coming up with further detailed specific recommendations but we welcome the Secretary to begin responding immediately. So that’s one potential strategy to deal with. Are we ready to provide our observations?
I think Vickie raised a couple important issues. Her thoughts about community reminded me of Len’s notion of community readiness. Communities are very different places. When we say community you’re right, it represents a lot of different levels of awareness and ability and to use information, to use data and we need to be cognizant of that.
And I agree, we need to do more work to find out exactly what is already going on so that we can support those efforts and make the Secretary aware that she needs to strengthen them. A perfect example in my mind is the BRFSS had a cutback of a third and this is a survey that states and locals use for mental health issues and for a variety of issues.
I don’t understand CDC’s decision to defund the provision of more local data but we can call out issues like that that we feel we need to provide more guidance and direction to the Secretary. We’ll get around to folks.
DR. STEAD: We’re down to 20 minutes. And we’re going to want to go over the draft work plan. So we need to figure out how to hear from people’s comments and bring this to closure so we can get into that.
DR. COHEN: Leah?
DR. VAUGHAN: Thanks very much. I very much appreciate the expression or framing of the community data literacy as a two-way communication. That there are ways in which the data providers need to learn about what communities need in order to engage effectively.
And I think that there’s many opportunities for learnings, places of stewardship and opportunities to grow. And mindful that it’s not about boiling the ocean, there are places, there are niches, local governments – there are some states where actually some of this is already happening. And to be able to reach out, engage, whether that’s with other agencies, philanthropy, universities, libraries, where there are opportunities to grow those stewardship and partnership opportunities. I’ll leave it at that.
DR. NICHOLS: In the spirit of 13 minutes, I just want to say that I agree with a lot of what’s been said and, in particular, Linda said it first. This idea that it’s no one’s job and Larry of course said it eloquently for some time. I also want us to be mindful of the fact that while we may bemoan things like the BRFSS cut, cuts are coming and budget constraints are real. And they’re not going to get better soon, if ever.
And so I think when we convey to the Secretary, we think you should improve this and do more of that and – in the sense it should be somebody’s job, she’s got to take it from somewhere. And I’m not saying we should call out where it should come from although it would be tempting. But I would say that we need to be mindful of the fact that when we recommend you spend resources here, something’s going to give. And therefore, we have to make the positive case, I think, for why this is more valuable than a marginal dollar spent on x, y, z.
And I would also just for 20 seconds say I don’t think we should wake up in the morning or go to bed at night blaming the creatures who produce what’s being produced. On the one hand we start our themes with you all are doing great work. On the other hand, we want you to reorganize everything you do.
AHRQ, NCHS, all of the individual surveys and data collection apparati within them, operate from statutory authority and requirements. They don’t exactly have just a ton of freedom about what to do here. So it seems to me the conveyance to the Secretary has to do with – she needs to create an uber entity, ASPE comes to mind, that can do this crosscutting sort of thinking and developing and frankly it’s going to have to come out of that kind of budget. It can’t come out of the surveys because then we’ll lose even more sampling.
The last thing I wanted to say is the only word that I would say kind of bugs me is actionable. I don’t know what this is, and maybe that’s because I’m sleepy and maybe that’s because I’m an economist but I do think if we’re going to convey to the Secretary that she should be devoting resources to improve actionable data, it would help a lot if we could give her one example. And Sonoma County works for me personally.
But I just think we can’t just say go do actionable stuff because you haven’t been doing actionable stuff because then the AHRQ and NCH people will go crazy. Because they’ve been doing actionable stuff too. So I just think we need to be quite specific on what we mean by actionable.
DR. COHEN: My only comment is that your focus is on the dismal science.
DR. SUAREZ: This is a great report. My comments are more about the variety of themes and areas and topics for recommendations. I hear at least three different groups of topics. One is the four priority areas on page five. And those are four large areas. Then there’s the list of potential recommendations on page seven, two slides.
I was trying to map actually each of the ones on page seven to each of the four priority areas and couldn’t quite get it there. It sounds like we’re saying there’s this priority area but there’s this other recommendations and it doesn’t seem like there’s a good mapping.
I did actually my own mapping and I found my way of trying to fit them but it might be a helpful way of, for example, presenting in the Secretary’s letter, these are the core major things that we found. And within each there is a series of recommendations that might be helpful.
And then on top of those two lists, I started adding my own list of other things that I heard that are not yet either in the first larger list or in the second larger list. So things like – people have said establishing a community of practice should be a formal statement in some place. The funding issue and the maintenance issue, that I think Linda highlighted, should be somewhere noted. So I have my own list. I know we’re short of time so I can send that to you.
MS. GOSS: Thank you, Len, because you basically addressed what I was concerned. I feel like we were in the weeds and we weren’t being strategic in our focus on how we wanted to advance this and I felt like we were almost ahead of ourselves in knowing what we really needed to do so I think it’s been a productive conversation.
And I think maybe also the roadmap or the work plan discussion coupled with some of the staggered efforts might be a cohesive way to reflect on what really needs to be the next steps because there are only so many resources and we need to be really careful with our breath and our words as we move forward.
DR. COHEN: Are your tents still up? Two really quick comments and then we need to move on with the work plan.
DR. MAYS: Specific recommendations would be – Jim talked about the fact that everybody now has their strategic plan. And it may be good to look and see where what we need is in the plan of other agencies and to really call that out. Because if they’re already trying to do that or wanting to do that it may be useful then to get it done by partnering with them.
Second, I want to kind of yield to Susan, because Susan wants to say something which is that the staff actually know some of the ways these agencies are doing this. And I don’t think, Bill, it’s that we need another hearing, I think we need the staff to probably have a phone call with some of the other staff of the agencies and help to flush some of this out. But I know Susan has something she wants to say.
DR. QUEEN: When you say actionable, I think I completely agree with your point for actionable data. My concern is that the Committee make recommendations that are actionable so that’s where that word means something to me – is something that the Secretary can act upon.
I think your point about diminishing your resources and statutory authorities is really key and then what Vickie was saying looking at the strategic plan for HHS, what’s already in there that might be already happening with various agencies and places – SAMHSA was here for the meeting, unfortunately HRSA couldn’t be – so some of the agencies that are doing a lot of community work we could have –
I realize you don’t necessarily get commitments of time to staff the Committee from the various OPDIVS but perhaps for project-specific activity we could request that people be permitted – to even be put in their work plans – that would really permit the ability of people to spend time and have some dedicated effort devoted to the Committee but there is a lot of work going on and I would encourage within the department already and it is such a huge department it’s hard to keep a grasp on everything even within ASPE trying to coordinate and understand what is happening in certain realms, it’s like herding cats I would say.
DR. NICHOLS: Ten seconds, I want to pick up on Bill’s beautiful use of the metaphor of the car that can park itself – I would say a smartphone. We don’t have to learn everything that’s in the department. We just have to be smart about what we recommend in draft form and they will friggin tell us and that’s a way to get –
We don’t need HRSA to come and teach us – we need HRSA to respond to what we say and if we’re stupid they will manage to get it on paper. And that’ll be useful for us to iterate. And that’s what I would suggest. Not try to learn it all. Try to write what we think we really want them to do and they will tell us what they’re doing, that they’re already doing, in about 2 weeks it will happen.
DR. VAUGHAN: In heeding the acknowledgement of limited resources, there are people whose day job it is and I think what I would say to optimize the return on our investment of resources, time and talent and treasure, is to do a much better job of reaching out to them. There are the libraries. There are the universities. Philanthropy is doing a lot.
The people in the regions are extraordinarily underutilized and incredibly much more in touch with what is happening within local areas and they are eager to participate and I would take this opportunity to do that.
DR. STEAD: Thanks everybody for the rich discussion. We have 10 minutes and so I think what we’re going to need to do is simply walk through this work plan without actually discussing it which is probably okay because it’s totally based on what we just spent a lot of time talking about.
And it will need to be morphed as we try to merge it and I think Walter is going to be trying to help with Debbie in terms of merging the three work plans together. So let me just walk through it so people can see how we’re thinking about parsing the problem.
So coming down from the top, we need to produce a summary of the roundtable. Susan’s going to be doing that and our goal is simply to get that done in the next several weeks so that will become an archival communication piece.
We need to go ahead and stand up the community of practice. We do not want to wait for our recommendation to the Secretary. We want to actually do it.
Since we have the volunteer support from Chris and Community Commons as a platform what we really need is guidance from Jim and Debbie about what are the bounds and the role of FACA in standing up community we don’t – because we want that community to be in place. We want to participate in it. We don’t need to drive it. And so what is the right balance there.
But we think that’s something that needs to be done ideally later this month or at the latest the beginning of January because if we can in fact use Community Commons we don’t need to get resources to do it. So it’s really a what can we legally do?
The framework, Susan has done a nice job in following up on Linda’s and others suggestion at the last full Committee meeting and beginning to turn that into a white paper that stands on its own, independent of how we got there. And we are planning to have a framework work group call later this month to try to move that forward.
We’ve just been through the recommendations to the Secretary and our hope is that we will be able to find some subset of what we talked about that we can get in a form that is useful to go on and put out while we peel the onion and work the next tier and our goal is to bring something back that would actually want to go through the process of getting sign off on, the wording or our full Committee editing process at the February meeting.
This idea of the next step in community data literacy which would need to get at everything from what do we mean by the voices to what degree are we pivoting, we think that that is ready enough that there could be a meaningful workshop, roundtable, whatever, about that in the spring timeframe. Not trying to load into the February block but in more the April, May, June kind of block. It would have to be sequenced with what we’re trying to do around the things that Standards has already got on the table and the privacy idea around the HIPAA and financial pieces.
Platform alignment is, at least from my perch, much less cooked. And so I think we need – I’ll scrub the word fact finding from my vocabulary – we need some form of scanning and interaction, maybe that could be done on the community of practice if we could get it in place, to really get a little finer lens on what we mean by that and how we might do it.
I believe that the framework is a key part of that and so I think those activities actually will turn out to be either – they’ll be highly coordinated. If we can gain enough traction in the spring then this is again something we could do in the sort of October time slot that we did this roundtable but we need more work there. And as we try to harmonize the plans, that’s one of several things that’s on our collective agenda that could drop into that slot.
Next steps with the feedback tool – we don’t want to just proceed with it, we need to really reflect what did we learn, how do we want to use it, what does that tell us about how the tool have changed, that’s again something that would be easier to work if we had the community of practice up and running. So it’s sort of downstream of what we learn in that process.
And then we’ve listed as 2016 and beyond probably realistically things that fit in with things like the Standards idea of population health measurement, transparency or privacies. What do we need to add to HIPAA to reflect all the changes that have happened since then? And those are the areas of measurement in the era of linkages and big data.
I think that actually would be broadened based on yesterday’s conversation to include measurement and survey research, in addition to that and possibly even how do we do measurement of progress on the Affordable Care Act, anything beyond that. So that might turn into one big visioning bucket.
And then another piece of the pivot is – we listened at the roundtable, if we’re really going to align federal action in support of communities as they go after wellbeing – that is much bigger than HHS. It actually brings together the other key – it brings together the whole government in large part. And so that would be another big visioning piece and those we’re currently targeting is downstream and that could help us as we try to put together a 3 to 5 year roadmap of what do we currently – what are we thinking about doing over time.
So that is a 9 minute run through of the work plan. Do you want to have a closing minute or –
DR. COHEN: I just want to reinforce one thing that Bill said earlier. When we talk about community data literacy, it is bidirectional. The focus might end up being on educating data providers rather than communities themselves around how to meet community needs. I see two tents up, Alix?
MS. GOSS: Building on a comment that Vickie made that really resonated for me, it seems that we need a 2015 staff analysis effort that helps us get a really clear view of the strategic alignment already in place within HHS on this and that we need to get that work done early to help inform some of the other work, especially the 2016 stuff that you wanted to talk about. So I think that that’s a missing item from the work plan and it might actually be a useful appendix even to sort of the white paper transformation that’s going to happen with the framework as sort of a reference source.
DR. COHEN: Great, any other comments? Very easy, doable work plan, like all the other subcommittees. So thank you all, this has been really helpful for us and if as you think through this you have specific comments for us, please feel free to contact us.
MS. JACKSON: Were you going to cover your third bullet? On health modeling, we have a third bullet, ONC health modeling group briefing, are you going to cover that later?
DR. STEAD: Oh, I’m sorry, that was left over.
DR. COHEN: That bullet was – Bill and I gave a report to a group that Paul Tang is heading in ONC around their health policy development and one – again this sort of reinforces a theme that emerged. There are a lot of folks operating in this space. We don’t want to duplicate any efforts. We want to work with them.
And we don’t fully understand everything that’s out there so we need to do some learning ourselves about other people who want to move some of these issues forward. In particular, they’re focused on measures at the EHR level but moving more towards community measures that ONC can recommend be collected. But we can talk more about that later.
MS. JACKSON: I think it is significant for the subcommittee to be aware that we’re making those kind of inroads. This is one of the second times that Bruce has been involved in being a great conduit from the National Committee to various groups and that will continue hopefully through 2015 so we become more visible and the issues are becoming more prominent throughout the various segments of our platform so thanks. That’s helpful.
So we will adjourn Populations and within 3 to 5 minutes start the full Committee.
(Adjourn at 9:20 a.m.)