[This Transcript is Unedited]
DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
SUBCOMMITTEE ON POPULATION HEALTH
June 21, 2012
Doubletree Hilton Hotel
8727 Colesville Road
Silver Spring, MD 20910
Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030
caset@caset.net
P R O C E E D I N G S (8:15 a.m.)
MS. MILAM: I’m Sallie Milam. I’m with the west Virginia Health Care Authority and I’m co-chair of Population Health with Larry.
DR. GREEN: I’m Larry Green. I chair it with Sallie.
MS. JACKSON: Debbie Jackson, Committee staff.
MS. KANAAN: Susan Kanaan, writer for the Committee.
MS.. QUEEN: Susan Queen, staff.
DR. MAYS: Vickie Mays, University of California Los Angeles, member of the Committee.
DR. COHEN: Bruce Cohen, member of the Committee.
DR. NICHOLS: Len Nichols, member of the Committee.
MR. DAVENHALL: Bill Davenhall, new member of the Data Access Workgroup.
DR. CAIN: Virginia Cain, NCHS.
MR. BURKE: Jack Burke, with the Committee.
MS. MILAM: Folks on the phone, we have Leslie Cooper and Nancy Breen. Anybody else?
MS. GREENBERG: Marjorie Greenberg, National Center for Health Statistics, CDC, and executive secretary to the Committee.
MS. MILAM: Our first order of business is to react to the changes we heard this morning and to get the letter ready so that we can present it to the full Committee, with the amendments that we discussed.
We don’t have a multimedia projector, but Susan Queen has agreed to walk us through the changes, to help us with the discussion. Susan, you have indicated that you have already made some changes. You can share the language with us and help us through it.
Agenda Item: SES Letter Review
MS. QUEEN: What I have done, just so we’re safe, is kept the original version of the letter and made another version that tried to incorporate the changes that I heard this morning. Stop me as we go along.
The one thing I did not do yet — there was a mention of the relevance, or whether or not to include ACA in this. I haven’t taken out the reference to the Affordable Care Act, whatever you all decide. It was mentioned as a possibility. It would change how we got here. That’s the only issue that I have. But the letter can be re-crafted if you decide that that’s what you want to do.
DR. GREEN: I thought the resolution to that was an additional sentence in front of it so that the letter was not predicated just on the ACA.
MS. QUEEN: Was that the sentence where you mentioned that we heard no dissent regarding the importance of —
DR. GREEN: Yes.
MS. QUEEN: Okay. I have a sentence like that in there that we can move and revise. I have it later on. We can move that.
A lot of the other changes were more minor in terms of adding a word here or adding a phrase there. This change — I think you all would probably need to see the letter, unless you have a place where you would like that to be inserted.
MS. MILAM: I thought, Larry, you talked about putting that sentence at the beginning of the second paragraph. The sentence was, “We heard no dissent to the great importance of measuring SES.”
MS. QUEEN: And then, “The Secretary has the authority to adopt and implement standards for the Department.”
MS. GREENBERG: What is that referring to? What does dissent have to do with anything?
MS. QUEEN: Well, agreement that the measurement of SES across the federal surveys is important for understanding this relationship with health outcomes and disparities.
MS. GREENBERG: No, I understand the purpose. You have the first paragraph that says this is the Committee, and the Department has already established these standards. Then it seems you need a sentence that says a related standard — I don’t know if it’s still in place, but at one point there was a rule, essentially, that you could not show data by race/ethnicity without showing some measure of SES, because it was too misleading. So I think some sentence about the recognition that along with these initial standards, the importance of some standardized way of collecting socioeconomic status also is apparent, or something, so that it’s not just tied in with ACA, but-
DR. NICHOLS: A longstanding Department policy and scientific consensus and all that stuff.
MS. GREENBERG: Yes. In light of that —
MS. QUEEN: And Jim mentioned something, too, about public comment. I wasn’t a part of that. You were mentioning recognizing the acknowledged role of SES and its relationship, and Jim mentioned public comment was received following the standards about having SES.
MS. GREENBERG: Public comment on the other records?
MS. QUEEN: That there was a solicitation of public comment on additional standards.
It muddies it up? Fine. Can somebody give me a sentence?
DR. NICHOLS: I thought Larry just wrote it.
DR. GREEN: There were two decisions made. We’re leaving the ACA stuff. We’re not taking that out. We’re adding another sentence, where it makes sense in the framing that Marjorie provided. The whole purpose of this is to protect this letter from being seen as having relevance only if the ACA prevails.
MS. MILAM: Then in the third paragraph on that first page, we were going to add Judy’s issue around the addition of standardization of code sets, along with collection and the mode of collection.
MS. QUEEN: But I wanted to mention something in the survey world. Mode of collection — when we say survey mode, I’m thinking of personal interview, paper and pencil, computer-assisted. We can’t necessarily standardize — we can’t take a survey that’s by telephone and now tell them it has to be a personal interview.
MS. GREENBERG: That’s true, although we have to recognize that it’s different sometimes, a different mode of collection.
MS. QUEEN: So if we say standardization —
DR. COHEN: I would say standardization of questions and code sets and consideration of mode of data collection and variable definitions and response categories.
I expanded that concept. It’s standardization of questions, standardization of code sets, and it’s consideration of modes of data collection. There might be different standards for different modes of data collection. Also consideration applies to — well, I don’t know whether standardization of variable definitions is a consideration or — I divided the world into standardization and consideration. The things that could go in one place or the other are the questions, the code sets, the modes of data collection, variable definitions, and response categories.
MS. GREENBERG: Variable definitions — what do you mean by that?
DR. COHEN: When I’m thinking about designing surveys, I guess the response categories — like how many response categories do we use for income?
MS. GREENBERG: I thought that had to do with code sets.
DR. COHEN: Code sets are slightly different. That’s how you code the 46 different kinds of nurses. Response category, I think, is a huge issue when there’s a difference in surveys. So you need to consider what the response categories are if you are going to be comparable across surveys.
MS. QUEEN: I sort of think that falls under questions. If you’re standardizing the questions — I mean, we could elaborate that further for the letter. It does usually think of question wording, response options
DR. COHEN: That’s fine. I put my survey hat on and was trying to think about what the issues are for surveys specifically.
MS. GREENBERG: If we said, “Standardization of questions and code sets, and consideration of modes of collection allow more” —
DR. COHEN: Okay.
MS. QUEEN: Should it be “modes” or “mode”?
DR. GREEN: “Modes.”
MS. GREENBERG: I’m happy to work with you on that first sentence.
MS. QUEEN: Okay.
MS. MILAM: I don’t see anything else on the first page. I think that does it for comments on the first page. Does everybody agree?
Susan, as a matter of process, after this meeting, if you get the changes to Jeanine, she could circulate it electronically to this Subcommittee and we could all look at it overnight.
MS. GREENBERG: You can just email it to me.
MS. QUEEN: We’ll do it after the meeting. I’ll make sure you have a copy.
MS. MILAM: That way we’ll have an opportunity to see it in writing and see if it looks like we thought it would when we heard it.
Moving on to the second page, I think we have a Len question that is sort of overarching. I don’t think we got a consensus around how well established everything else is beyond education — the income, occupation, and family size.
MS. QUEEN: In drafting the letter, I didn’t want to have a repetitive — introducing each of the concepts or the variables. You could certainly say that for income.
MS. MILAM: Can we say in the paragraph that they are all well established? Or do we disagree on that?
DR. MAYS: I think that, in at least the discussion that we were having in the room, they vary. I think it probably would be better, if that’s a concern, to just take it out of the first one, with education, and let them stand. I just think it really varies. For example, in income, there’s a new measure of poverty that is being used. It’s being debated as to whether those changes are good or bad.
DR. COHEN: It’s the difference in how we should measure something and whether there is an effect that is established and accepted, widely supported, of socioeconomic status on health. All I was saying was that I don’t know of very many people who think income doesn’t matter and that that is in dispute. It is certainly not perfect. But maybe the flaw is not in the concept so much as the way we measure income. Larry gave a good example, someone who doesn’t have income but has wealth. Then the concept really ought to be economic resources, not income. But the point is that access to economic resources, I think, is fairly well established as at least associated with outcomes.
That’s why I was surprised to hear you say there has been serious doubt raised about the impact of income.
DR. MAYS: What I was actually saying was the notion of SES — it’s almost like the way that Susan has this. It’s the relationship between education and health. She’s not saying education and SES. She’s saying education and health. You can use the term “SES.” That’s the only thing I’m drawing back from. If you want to say between income and health, occupation and health, it’s fine. I think some of the issue has to do with — this really doesn’t have to do as much with SES as it should. If you are going to talk about occupation, then you really need to talk about occupation relative to something we’re not discussing, which is the status and prestige groups. That’s really when it’s SES. Income and education more so, I think, even than education, has to do with that. I’m just saying that it’s about health that we have lots of findings.
DR. COHEN: I think Susan was just trying to have introductory sentences here for the concepts. If we just change that sentence, that education is considered a key measure of socioeconomic status —
DR. GREEN: I agree.
MS. GREENBERG: But then you can’t say something parallel.
DR. COHEN: We don’t have to add anything to income and occupation — does that solve your problem?
DR. NICHOLS: Here’s my problem. When I read the letter, I thought that a stranger from Mars reading this for the first time might think that, except for education, this Subcommittee thought there was nothing established in any kind of association with health, that we don’t know anything. I just didn’t want that impression to be left, unless you all have been convinced by this meeting I missed and I’ll go back and watch the tape — I can’t believe that’s what
DR. COHEN: I would do it in two different ways. I would change that education sentence to be just an introductory sentence, that education is a primary indicator of socioeconomic status. In the previous sentence, I would say, “Four key measures that relate socioeconomic status to health are education, income, occupation, family size and relationships.”
MS. GREENBERG: Wait a minute —
DR. COHEN: “The Committee has confirmed that the following areas are key components that are necessary for the measurement of SES and its relationship to health, on which standardization should occur.”
MS. GREENBERG: “And its relationship to health,” that’s what’s needed there.
DR. NICHOLS: Very good. I’m happy.
MS. GREENBERG: But then I don’t see any need to remove that sentence about education being a well-established variable related to health and health outcomes.
DR. NICHOLS: That implies that the others are not.
DR. COHEN: Then we have to add sentences about income, occupation, and family size.
MS. MILAM: We have included Bruce’s sentence that education is a primary indicator.
MS. GREENBERG: I’ll tell you what my concern is. If the Department ends up taking a really conservative approach to this, like they did on the language thing — and if you think about it, surveys that don’t currently collect income — that’s a high bar to now have in collecting income. Occupation and industry — though I feel strongly about it, it still is harder because of the coding and all of that. But if they don’t collect anything, maybe they could at least collect education. It may not be the best by itself, but it’s pretty well established and it’s pretty straightforward. I know there are other issues about education, like the quality of the education now and all that. But if it came down to just saying we really don’t know enough or it’s too complicated to have a standard for all federal surveys on income — or HHS standards — and on occupation, at least they could do it on education.
Anyway, that was just where I was coming from.
DR. NICHOLS: Then you should say that and not say that education is linked to health and imply that nothing else is.
MS. GREENBERG: Okay. I like what Bruce did up here. That’s all I’m going to say.
MS. QUEEN: So let me get straight on that question that precedes what I have now put as the initial recommendations: The Committee has confirmed that the following areas are the key components that are necessary for the measurement of SES and its relationship to health and on which standardization efforts should focus.
MS. GREENBERG: Yes.
MS. QUEEN: Would it be better to throw the word “well-established” in there or is that not agreed upon?
DR. GREEN: Can we just stop with that sentence?
MS. QUEEN: Okay. And I will take out or not take out, “The relationship between education and health outcomes is well established”?
MS. GREENBERG: Take that out. It seems people want to.
MS. QUEEN: Okay. Now I have, “Education is considered a key measure of socioeconomic status.”
DR. GREEN: You still have to have an introductory sentence.
MS. GREENBERG: You didn’t take out “and has the following initial recommendations.”
MS. QUEEN: “Standardization efforts should focus” — colon, bold, initial recommendations. Then I replaced it with the new sentence: Education is considered a key measure of socioeconomic status.
DR. GREEN: Everyone is good with that.
MS. MILAM: Moving on to the next paragraph, Bill Scanlon suggested that we put in front of it “income earned and unearned.”
MS. QUEEN: And he wanted to add a category, an additional category, like dividends and interest. I would suggest that we say “earned and unearned income,” not necessarily before the first “income,” unless you want to start —
DR. GREEN: The last sentence.
DR. NICHOLS: Total income, earned and unearned.
MS. MILAM: And then he gave some examples to include in the parenthetical.
DR. GREEN: Unemployment and income maintenance.
MS. QUEEN: He said dividends and interest.
How many of these do you want to include?
MS. MILAM: Is it helpful to include all of them?
MS. QUEEN: No, because there are way too many. If you use the 51 questions or whatever is on the CPS, you would have another paragraph.
DR. NICHOLS: We need to have examples of unearned.
MS. GREENBERG: What about disability income?
DR. NICHOLS: That’s not what we’re talking about. It’s retirement and dividends and interest.
DR. COHEN: Wages, salaries, dividends, interest, retirement benefits, et cetera. Those are broad categories that cover what we’re talking about.
MS. QUEEN: Okay. So you want “retirement benefits” versus —
DR. COHEN: I don’t know. Is that the technical term?
DR. NICHOLS: It’s called dividends and interest technically. In the tax code that’s what it is, and then distributions. “Distributions” is what the term is for a pension.
DR. COHEN: So wages, salaries, dividends, and income?
DR. NICHOLS: That’s what I would say.
MS. QUEEN: Okay.
MS. GREENBERG: Disability income is —
MS. QUEEN: He didn’t say to take anything out.
DR. MAYS: I worry less about the length and more about the concept. I don’t know that they know these concepts to think to include here.
MS. QUEEN: Take a look at it tomorrow and see what you think.
DR. MAYS: Okay. That sounds good.
MS. MILAM: Moving on to occupation, we were going to clarify that third sentence a bit and make sure that one question related to occupation and one to industry I have also “and use national classification and coding standards.” We were going to add that in there, too.
MS. QUEEN: What I have done is to take the sentence that says, “At a minimum, a set of two standardized questions” — it should be worded “one question to collection occupation and one to collect industry.”
MS. MILAM: Do we need to reference the national classification and coding standards?
DR. COHEN: I have a concern. Census has a slightly different set of codes than NIOSH for their SIC/SOC codes. I just am not up on the details of where it stands in terms of whether there’s one nationally accepted code set. If we just say national codes and then worry about it later, I think we’re a lot safer, rather than identifying one particular code set.
MS. GREENBERG: Census has a different grouping than the Labor Department?
MS. QUEEN: It’s slightly different, yes.
DR. COHEN: And again, it has to do with mode of data collection, in some sense. It developed initially because they were asking different populations in different settings. But I don’t know whether they have converged now or if there is still some disagreement, with respect to survey data collection, about what standard to use.
DR. MAYS: Census is actually — when I talked to them, they are actually doing more work. I don’t know if it is going to converge, because they have some concerns that I haven’t heard expressed by NIOSH.
MS. MILAM: Could you read that sentence again, Susan, since we have amended it in a couple of different ways?
MS. QUEEN: “At a minimum, a set of two standardized questions should be implemented, one question to collect occupation and one question to collect industry.”
MS. MILAM: And then Bruce’s language?
MS. QUEEN: That’s what I don’t have.
DR. COHEN: I don’t have any language, other than I’m concerned about Walter — Walter essentially said we should reference the SIC/SOC codes in here — I’m concerned that — we have already said we want to standardize code sets previously. I think that’s fine. I wouldn’t specify here because I’m not sure what the Department’s decision will be on that.
MS. MILAM: Should we have a follow-up sidebar with Walter maybe over dinner, just have a conversation, so he’s not surprised tomorrow?
DR. COHEN: Okay.
MS. MILAM: on the last section, family size and relationship, I think, Bruce, this was yours, family size and household composition. Is that right?
MS. QUEEN: Yes. Following those, I added — and this is where I don’t know what you all want to call it the overarching recommendation that was discussed of pulling that sentence that was the next-to-last one in the concluding paragraph.
DR. GREEN: Recommendation 5. It was from the concluding comments, starting, “We recommend.”
MS. QUEEN: Someone mentioned having a separate heading, having those first four be initial recommendations and this being an overarching one.
MS. GREENBERG: Yes. That doesn’t exactly fit in as another bullet.
DR. MAYS: I think it should go first. Then we’re going to add some things to it. It should probably it’s overarching — go first.
MS. GREENBERG: Then it doesn’t fit.
DR. MAYS: What do you mean?
MS. GREENBERG: Because you say, “The Committee has confirmed that the following areas are the key components that are necessary.” Then you say some initial recommendations. Then I think you could just have a new paragraph that says — it would still be under initial recommendations.
MS. MILAM: More of a conclusory paragraph in the recommendation itself.
DR. GREEN: Let’s just say, “We also recommend.” We were comfortable with that. We’re just going to cut and paste it over here. We don’t make it a bullet, don’t leave it under the heading, and we just say, “We also recommend.”
DR. COHEN: It would be stronger if we had a separate section that said “Recommendations,” and then we started with, “We recommend that HHS undertake additional efforts to explore the gaps in data collection and analysis, the measurement of SES in the health surveys, to improve the understanding of health disparities,” and have that be our key recommendation, and then go on with the paragraph that Betty has confirmed and then the four bullets.
The first thing they will see is our overall recommendation, I think.
PARTICIPANT: I like that.
MS. MILAM: Do we want to include HHS reporting back to us at some point? That was discussed.
MS. GREENBERG: It’s interesting. The Quality Subcommittee had that in their letter and they decided to take it out.
Sometimes we do that. In this case, I would think there is a desire of the Subcommittee, as I understand it, and maybe the full Committee, not to just turn this over to the Department and hear about it a year from now or something. You can ask.
DR. COHEN: As part of our concluding comments, we could say, “The Committee would like a progress report on these issues in a given time. We will continue to support your efforts to identify these standards.”
MS. GREENBERG: Or you could say — which makes it sound less like “report to us” — “The Committee is very interested in this topic and feels that it’s very important for” —
DR. NICHOLS: Why don’t we say, “We invite a representative to testify before us in” —
MS. GREENBERG: Why don’t we just say “appreciate” or something?
DR. COHEN: “And appreciate a progress report in six months,” is fine.
DR. NICHOLS: They like to talk about what they do. What’s the issue here?
DR. MAYS: When Jim first talked about this, he also talked about in the future potentially looking at these issues in terms of administrative data and EHR.
MS. GREENBERG: That may come up.
DR. MAYS: Well, the question I’m going to ask is, should we say that that’s an interest that we have? I’m not saying that we say we’re doing it, but it’s to support the Department in moving ahead with that — saying that we realize this is relevant to progress —
MS. GREENBERG: If you want to say that sentence about “the Committee considers this very important,” the collection of socioeconomic status in surveys, as well as administrative data and electronic health records — to be a very important topic, and it would appreciate periodic reports on what the progress — whatever.
DR. GREEN: Vickie, let me ask you this. After we get this letter taken care of, we’re going to talk about our next priorities. Let’s for now just assume that this Committee has a continuing interest in improving the collection of data for socioeconomic status. I think you are saying we need to make two points here at the end. One is that we want to keep track of this. We have a continuing interest in and expect to work in this area. Let’s just write a sentence that says that, without getting into the specifics about what — it’s not just about EHR data. There are gaps all over the place that you care about.
DR. MAYS: Jim brought it up, so I was trying to help strengthen what I’m sure is also his agenda within the Department, which I think Susan can talk to.
DR. GREEN: Could you live with Susan constructing a sentence that says, “The Committee has continuing interest in this important area and would appreciate regular feedback and reports about your progress”?
DR. MAYS: That’s fine. I’ll live with that.
DR. COOPER: Do we need to — as necessary or as needed? The fact that we just want them to report to us — also our availability in helping them to work through this.
DR. COHEN: Yes, that’s a good point. I think that should continue to be in here. This sentence about reporting back and emphasizing our interest should sort of replace the “recommend” sentence that we removed.
DR. GREEN: Is that okay?
DR. COHEN: Yes, that’s great.
MS. GREENBERG: Maybe I’m — I don’t know. Just tell me yes or whatever. Is the only reason to explore gaps in data collection and analysis in the measurement of SES on health surveys to improve the understanding of health disparities? It seems to me that — I mean, clearly, inequities and all that — but it seems to narrow it too much to put it in that context.
DR. COHEN: It depends on how you define health disparities. We traditionally think of health disparities as differences in outcomes by race. In fact, health disparities to me are any differences among groups that we’re interested in.
But if you’re looking in the context that most people think of disparities, you’re correct. If you are looking at in a larger context —
MS. GREENBERG: I agree.
DR. GREEN: A suggestion. Could we address Marjorie’s concern there by saying, “The gaps in data collection and analysis for the measurement of SES on health surveys to improve” — right there, could we say “population health and the understanding of health disparities”?
DR. NICHOLS: That’s great.
DR. COOPER: That’s fine, because that’s broader.
MS. QUEEN: I also have there to add the phrase “code set composition.” We recommend that HHS undertake additional efforts in exploring the gaps in data collection, code set composition, and analysis for the measurement of” —
MS. MILAM: I had that, too, but I wasn’t sure since we had that at the beginning.
DR. COHEN: I think we have taken care of the code sets.
MS. MILAM: The only other thing I had under the recommendations was to add a reference to the American Communities Survey, a footnote or a reference.
MS. QUEEN: The question I have about that is that we actually have it — it’s mentioned in the first paragraph, the second paragraph, along with the other Census survey that we heard from during the hearing. Later on it’s mentioned under Census surveys: The largest survey in the US only serves — on a wide range of economic —
MS. GREENBERG: That’s under the findings, right?
MS. QUEEN: Yes.
DR. COHEN: I guess the grammatical way would be, when you first mention all these surveys, to reference them. Do our letters always include reference footnotes? I don’t know why, in particular, we need to do ACS, but if that’s the standard, then we should do them all.
DR. NICHOLS: Is it because it’s not an HHS survey? Is that why we would reference it?
MS. QUEEN: The CPS and the ACS were both mentioned in the Section 4302 language, and the ACS was what was used sort of as the model for the standards that were recently adopted.
I could easily put a footnote at the bottom of the page.
MS. GREENBERG: We distinguish between health surveys and these other things, the census, the American Community Survey, et cetera. So I don’t quite understand what the problem is, particularly because later in the letter —
DR. COHEN: I just think it’s an issue. If we want to include references, we should do those three other populations there. I don’t care.
MS. MILAM: I don’t think we need a reference. We have abbreviated them so we can later refer to it as ACS — set forth the abbreviations.
MS. GREENBERG: That’s the only standard we have, that you have to spell something out first before you abbreviate it.
MS. MILAM: And that impacts the findings under Census surveys. Maybe afterwards, do a search.
I don’t see any other feedback on the recommendations themselves. Does anybody else have anything?
DR. COOPER: I have a few comments on the third page, that first bullet, right above where we talk about Census surveys. In that statement where we talk about interagency collaborations, the fourth sentence, where we have, “Broad representation is required,” one of the pieces that we thought was critical was “broad representation and discussion.” We don’t just want people to be present. They need to discuss these issues.
DR. COHEN: Nice addition.
DR. GREEN: Good addition.
DR. COOPER: In that next sentence, where we say, “Statistical agencies,” we want “the broader research community,” not just “the research community,” because that could be very narrow. We’re really trying to include as many as possible. That’s just a suggestion.
MS. MILAM: What was the suggestion, Leslie? Can you repeat that?
DR. COOPER: Add the word “broader” to “research community.” It’s really adding it back. We had it in there before.
MS. QUEEN: Do we want the word “broad” twice?
MS. GREENBERG: “Broad” twice is a little overdoing it, I think. The “broad” covers both.
DR. COOPER: Okay. That’s fine. I just wanted to add those two. If we want to take out the second “broad” from “broad research community” — but we are saying that we do want them to engage a larger group, not just a small subset of researchers, because this is a broader issue. But I withdraw my comment.
MS. MILAM: Any other comments about the findings section? It runs for several pages.
MS. GREENBERG: I don’t think we got any comments on that.
MS. MILAM: But does anybody around the table have a question or concern?
MR. BURKE: Within SES key measures, that section, the second bullet, the first sentence is a marathon. I’m wondering if we could end the first portion of that after “policy analyses,” period, beginning the next sentence with “most.”
MS. QUEEN: Got it.
MS. MILAM: Are we in consensus?
Susan, you’ll work with Marjorie, and we’ll have some homework tonight to check out the changes. If we see anything, how should we communicate it?
MS. GREENBERG: Just respond to the email.
MS. MILAM: Okay.
MS. QUEEN: I have everything that we just discussed, this one sentence that we are going to craft and then whatever else you have.
MS. MILAM: We’re first on the agenda tomorrow right after the call to order. If we need some conversation, maybe we could — we’ll just have to watch our emails and come back together real quickly if we need to.
MS. QUEEN: I can be here earlier than the start time.
MS. MILAM: We’re ahead of time. It’s 4:30, and 4:40 is when we start “Next Steps.” Should we dive in?
Agenda Item: Subcommittee Strategic Plan — Next Steps and Template Review
DR. GREEN: In preparation for this meeting, I did the following. I have a bad habit of keeping in my Outlook folders for different things. It drives the network administrator crazy, particularly when it comes to NCVHS, because of the size of the attachments that come from NCVHS. But anyway, I have one of these, and when they make me, I archive it.
I went back and looked over several months of reports, letters, drafts, communications, and emails from all of you, for the sole purpose of looking for comments that the membership has made about, we should do the following, this is important, and that sort of stuff.
I don’t know whether I’m going to help or commit a crime. I think that where we have been over the last few months can be channeled into two rivers. You’ll remember that we have had two face-to-face meetings in which we said, what should this Committee be doing next? What are our priorities? Where should we go? At the last one, there was a list of seven. I emailed those to the Committee again. Some of them were very explicit, detailed sorts of things, and others were at the 60,000-foot level, covering a whole slew of things.
It was just an intellectual exercise that I did in preparation for this moment to make a shot at giving us a starting point in how we might think about organizing our future work.
The two rivers: There is one of them that I believe we have a passion for, where we have members on the Committee that — what was Judy’s phrase? She said she had a special place in her heart for ICD-10. We have Committee members that have a special place in their hearts for continuing to improve the way this country collects data about socioeconomic status. We have Committee members that have spotted gaps that need to be closed. We have Committee members that see areas that need to be explored.
I settled on the word “innovations” and the collection of data about socioeconomic status. I think Vickie dreams this. I think Bruce has the way we do it memorized for virtually all the surveys. Jack — you guys are great here.
So I think one of those rivers for future work has to do with innovation opportunities for the collection of data about socioeconomic status, in the context that we had that big, global discussion in just a few minutes ago. A new world is coming. You guys have ideas about this. You care about it. I think it’s part of the reason you want to be on this Committee. So that’s one of the rivers.
I think there’s a second river. I will use Susan Kanaan’s present to crystallize this. She has a place in her heart for the community as a learning health system. So do I. I think several of you do also. This turned out to be extraordinarily fertile territory. The things I found in our discussions and our comments about the community as a learning health system had to do with — from Justine, it was, shouldn’t there be standards for community measures of health? For communities that are on fire to improve their health locally, shouldn’t there be some standards about metrics measures, data collection?
The thing we just heard reported from Linda about where the Privacy Committee is going — a privacy and security framework for community-based data collection and use.
A third one — I think the question may have come from Paul, but I’m not absolutely sure — was, just what would communities do with their local data if they had it? What is it they want it for? What do they want to do?
One that we called out in the report, the monograph, was, what do they need in order to be able to do this? We captured this as the missing infrastructure that could use a little assistance. We discovered the lack of analytic capacity and that sort of stuff.
So those are my two rivers and their dimensions that I can find in my Outlook file. That’s my best shot at it, guys. Can you guys repair that and fix that?
MS. GREENBERG: There may be other topics, too.
DR. GREEN: And there could be other topics. Those are the ones that I have a record of.
DR. NICHOLS: Could I ask a question? Do we have to choose among them? Can’t we pursue both? Shouldn’t we explore that as an option?
DR. GREEN: We probably should yield to Marjorie here. When Sallie and I have talked about this, we feel that the Committee, particularly anticipating that there will be new appointments and that we will recruit another person or two to the Committee, would be capable of following a couple of streams of work simultaneously. I’m not so sure we can do three or four streams of work simultaneously, but a couple — that strikes me as being feasible.
MS. GREENBERG: One limitation is the number of actual hearings that you can hold, particularly separate from a full Committee meeting. That’s just a financial one. But although we have been saying that for some time, we have never turned anyone down yet on being able to do it. You organize yourselves for them so quickly.
I would think both of these areas could be pursued, and I think they are related to each other.
DR. NICHOLS: Exactly. That’s where I was going. To me, we can hold the hearings back to back, one on Tuesday and one on Wednesday.
MS. GREENBERG: Yes.
DR. NICHOLS: You can stay at my house if you need to save a little money.
(Laughter)
MS. GREENBERG: I should alert you to the fact that we are going to be under serious pressure to only meet in federal facilities from now on.
DR. COHEN: So we’re going to end up meeting in Hyattsville.
MS. GREENBERG: Not all the time, but it may happen more often than in the past.
DR. MAYS: The issue that we had previously is no longer the same. More FACAs are going to have to —
(Simultaneous discussion)
DR. COHEN: Let’s do it. Thank you. I think those are the rivers that we’re interested in.
MR. BURKE: I think those we can focus on and we can take each to the next level. This is about looking ahead. I feel like we are better positioned on these two than — I don’t know what the other options would be, but these feel like we could almost describe what the next iteration would be. They are familiar.
MS. GREENBERG: I didn’t follow you completely.
MR. BURKE: These two are very familiar to us. It would be a natural place for us to look from as we go forward. We know probably more about these two larger categories of initiatives than any other two. They are the most recent and we have done the most in-depth work on them.
MS. JACKSON: We’re also getting a lot of air play on the community health. Larry and Sallie were conscientious — I’m not tooting any horns, but they did a webinar — the slides are up. Of all the items that the Committee had been working on, the eHealth collaborative focused on that. We could work with that, saying here’s what we are doing, here are the possibilities, pull slides together. That was a wonderful job.
The same thing with the National Statistical Conference coming up in August. That is a focus for that you have a lot of energy and synergy. A term that came up in the discussion for me in the full Committee was “convergence.” Seriously, you have the departmental representatives there all speaking. They all kind of touched on what the Subcommittee has been doing. It would be nice to kind of keep that energy going there.
PARTICIPANT: It relates to the new working group.
DR. COHEN: Yes, exactly. That was going to be my point. I would like to help focus the new working group on data access to issues around what communities need in terms of data access. If we design new applications and we are thinking about new products and directions the Department can go, it should all be around providing better data to communities.
That’s a slightly different perspective than I think Jim’s lens is, which is appropriate because he is in the Department. We can hold the community lens to those efforts. I could see this work really being integral to that.
DR. GREEN: Vickie, it’s very important to me personally to capture in the SES work a list of issues that I heard you championing during the hearing and at other times here. Do you have examples of the areas? Can you spot two or three example areas that need to be further explored, gaps to close, that sort of thing, that we could use for first steps to get us going in this direction?
DR. MAYS: I would have to think about what to prioritize. If we look at what happened in the hearing, what we found was that we probably need to do more work specifically in terms of occupation. I think we all kind of decided it was off the radar. But whether or not that sufficiently captures everything I think is still an issue, and how it is that we use it as a part of SES.
I think the other question really has to do with, in education, whether we stay with — these were drilling-down kinds of questions — whether we stay with just the measurement that this is what a person has gained versus whether there is some better measurement. We didn’t hear from the education statistics people. There’s actually a group within the federal system — Marjorie, are they called the National Education something? It’s a federal group.
MS. GREENBERG: There’s the National Center for Educational Statistics.
DR. MAYS: Maybe that’s what it is.
MS. GREENBERG: That’s our decentralized statistical system.
DR. MAYS: I think that that’s something where we are probably not quite where we need to be in terms of what the educational issues might be, because we didn’t hear from the government side. We heard from the government side on all the others.
I think the big picture is whether or not we want to move to something like SEP, socioeconomic position, which then brings in, on both ends, the children and the elderly, the issue of what happens relative to things in early life and how they affect later, and then for the elderly, the issue of retirement resources, et cetera, so understanding the lifespan.
It’s almost like in SES. Probably the best thing we could do in general is have a better frame — and the frame probably is a lifespan frame — and then to take that lifespan frame and consider how to do it across agencies, as well as groups.
We have some things. Other people have other things.
DR. COHEN: I think there are a couple of other issues that you touched on that we talked about — certainly changes in socioeconomic status or position over time, and the impact of changes on health. There hasn’t been, I don’t think, very good work looking at how to collect data about changes in SES over time. The reason people use education is because after you’re 25, it stays the same.
DR. MAYS: What about lifelong learning?
DR. COHEN: For the measures we have, it usually stays the same.
But the question is, now, with huge changes and the instability in our society, I think there are more dynamics in socioeconomic status that might be related to poor health outcomes that we haven’t really measured well. I think that’s an important issue.
A lot of the literature, particularly Nancy Krieger’s work, looks at community measures, not individual or family measures. That’s a huge issue. It might be the dissonance between your personal socioeconomic status and the community or neighborhood you are in that is the real stressor that leads to poor health.
So I think those two are also very fruitful. This would really be pushing the envelope, because the feds haven’t been involved, I think, in any kind of consistent fashion — the research community is far ahead of our federal data-collection systems in these areas.
DR. MAYS: And the states. When you look at CHES(?) and some of the other things, we already collect that stuff and have ways in which to demonstrate how it works. But it hasn’t happened at the federal level. So it’s actually moving very fast, I think, for people who are doing state-level data collection, to try to do the integration in order to give that lifespan frame.
But I think you’re right, at the federal level, it just hasn’t.
MS. GREENBERG: That raises an interesting question. I think all this important and fascinating, et cetera. But those questions for the Executive Subcommittee retreat — what topics are you addressing? Why was this chosen? Who is the customer?
We have specific customers for a lot of things, like the Congress and CMS. I feel like some of the best work the Committee has done is when maybe there wasn’t a known customer, but the Committee thought it would be good for you to try it.
But, on the other hand, you want to do work that has some potential of uptake or contribution to your advisory role. I really do feel that the Committee advises well beyond the Department also. I don’t know whether there would be utility to states that are actually in this area.
DR. MAYS: Oh, I think this has utility to the feds.
MS. GREENBERG: My question is, will there be uptake or is there an interest in the Department that the Committee address this? Even if there isn’t — that was where I was going — it might be useful to others in the community, whether at the state level or — for the Committee to address it.
But it is something to think about.
DR. NICHOLS: But I thought the second paragraph of our letter said the data advisory group inside the Department asked us to address the SES question. I took that as proof that there was some interest.
MS. GREENBERG: From a minimum-standard point of view, although I think in that initial call we had with Jim, he certainly was interested in the Committee exploring some of these broader things.
I think probably the question is, down the road, is there interest? I guess I would ask Virginia, who is involved with the NCHS perspective on the surveys, et cetera, whether there are aspects of socioeconomic status that you think NCHS is interested in exploring where this Subcommittee might be helpful.
DR. CAIN: It’s certainly a topic of interest to the various surveys around the things that it sounded like you were talking about, those contextual variables. We certainly do that. That also is a topic of interest. Now, we do those on a case-by-case basis as opposed to issuing data sets that have them, because it really depends on what the researchers are interested in. Everybody can be interested in something slightly different. We have taken the approach of doing individual files for people. But it’s certainly something we have done for a long time and continue to maintain interest in.
DR. COHEN: Who is our customer? Who’s the “our” there? Is the “our” the Committee or is it meant to be the federal government? I’m not sure.
MS. GREENBERG: This is framed as, for work that the Committee is doing, who is the customer?
DR. COHEN: Usually the Committee is doing work at the direction of the feds to identify other customers. I think here we have an opportunity to independently define the federal statistical agencies as our customers, because they have done less work in this area. It becomes cyclical. It would be nice to have national standards on NIHS or some of these data, because what happens at the feds ultimately filters down to the states and the community level. This is an area that is, I think, a gap in our federal data-collection system. Some of this stuff is, I think, particularly relevant to saying that HHS is our customer for this kind of work.
It’s a great question to ask.
MS. QUEEN: Do you mean supplementing data sets with contextual variables or linkages of data sets?
DR. COHEN: We’re thinking expansively here now. It would be everything. The focus on the federal surveys has been on mainly, at least to my knowledge, individual and, to some extent, household. Should we be thinking in terms of adding data to better understand individuals and households in the neighborhoods and in the communities, and the impact that has on health outcomes, health behavior?
MS. QUEEN: I think there is perhaps more work going on that is not as visible in a lot of agencies. I think one issue is that a lot of it ends up being restricted data, where people can only access it from a research data center. I think there’s a lot of interest in doing this more and more, and having more data hubs, with linked or matched files.
DR. COHEN: As both you and Virginia pointed out, access is another issue. But I think there are still some concepts that have been less considered by the feds in surveys than have been done in the research community status and contextual understanding. I think that’s a fruitful avenue for us to consider.
DR. GREEN: I think Sallie and I heard enough. We can take to this meeting the answer to the customer question. It morphs and mingles. In some instances it’s federal agencies, in some instances it’s federal statistical folks and the broader research community, and in other instances it’s communities. We actually may have in mind that we want to stimulate a customer in some way or another because of the new world we’re talking about. I think we’re okay here.
MS. GREENBERG: I just have, putting my practical hat on, one question. Anything that you do would need someone to staff it, obviously. Susan, who has been wonderful, in addition to her full-time day job, also has been asked by Jim to staff the new data access workgroup.
MS. QUEEN: I think he’s moving me to there. There’s supposed to be someone who will have the primary role of lead staff to the data access and use workgroup.
MS. GREENBERG: But that person hasn’t come on yet.
MS. QUEEN: It hasn’t happened yet.
MS. GREENBERG: Okay. And Jackie Lucas, who was also very helpful with this process, has responsibility for some very big project at HIS that came up during this period.
Suggestions? I’m wondering whether any of our colleagues at NIH, where they have done a lot of work in SES, can step up to the plate.
DR. MAYS: Nancy Breen.
MS. GREENBERG: Nancy is already staff to the subcommittee. We will need somebody to staff it. I realize that’s Jim’s and my responsibility, but, on the other hand, if those of you who are working in this area know people who have strong interest and expertise in this, that would be helpful.
DR. GREEN: We need to stay out of it, in my opinion. It’s not our role to tell you guys how to run the agency.
MS. GREENBERG: No, but we will need to find — I just wanted you all to know what was happening here with the staff and the subcommittee.
DR. GREEN: To go a bridge too far, I am extremely pleased with the Committee’s work products lately. They are the quality products they are because of Susan Queen and Susan Kanaan. Everybody needs to understand that. They were difference makers. If I were king, I would just ask for Susans. The Susans are fantastic. They are a pleasure to work with.
If we can’t have the Susans, we want someone at least like that.
MS. QUEEN: We are going to ask for some additional — there’s somebody in ASPE that we are going to ask for the data access and use workgroup. We know at least one other person that we’re going to —
DR. GREEN: This is really crucial. I think all of you recognize it. Without the staff, these things really stutter and we struggle and we tend to run around in circles.
I’m glad Marjorie brought it up. It’s a very clear message. If we were to chase these two rivers, I think we’re probably going to need staffing for each of the rivers. It’s not likely to be the same person.
MS. GREENBERG: I think you’re right, even though they are related.
DR. NICHOLS: Can I just pick up on that? Given your point that we’re building on existing work, why can’t we just go arm-wrestle Jim two out of three and keep the Susans?
(Laughter)
We should have dibs on them. This data access thing is a whole new thing. Who cares if they get some new ASPE person who can’t spell? What I want are the people we have. Why not hang on to them?
DR. GREEN: Maybe they want to get rid of us.
DR. NICHOLS: There is that. I mean, really, why throw away expertise?
MS. GREENBERG: I’m not saying that Susan would never darken your door again. But to be able to take the lead that she took here may not be possible.
MS. QUEEN: I can talk to Jim.
MS. GREENBERG: We’ll work it out.
DR. NICHOLS: Two out of three.
MS. GREENBERG: All right. It’s better for them to hear it from you than from me.
MS. JACKSON: And the question that came up in this webinar related to Susan Kanaan and the interview she had with the community, which has been phenomenal.
MS. GREENBERG: On the community health, we had Susan and Nancy Breen for the departmental person. Many other people, too, worked with you on that, I think, not so much gathering the information, but we had a little group, I remember.
Susan, I know you have an abiding interest in it, even at the local level. It seems that your wish may come true there.
MS. QUEEN: I have a question, too. With the new data access and use workgroup, there’s sort of overlap — what a lot of the Datapalooza was, was how the public and communities can use existing federal data and data systems. There were a lot of demonstrations of the new health measurement tracking project. It was a tracking project. Now it’s the measurement system. But all these things — how can they help communities have data to know what’s going on in their communities for improving activities? There has to be some overlap in the work, I would expect.
MS. GREENBERG: There’s overlap among all of the subcommittees. Actually, we have found that that has enriched our work. That was a Pollyanna response.
MS. QUEEN: But it’s probably helpful to have either staff or members that are part of both groups.
MS. GREENBERG: Bruce is this Subcommittee’s representative. We have two members of the new working group who chose this Subcommittee to visit. I see no reason, particularly if they are here already for a meeting, why the new working group members can’t be at least corresponding members. We have that term, “corresponding members,” someone like Linda Kloss, who is not actually a member of the Standards Subcommittee, but she’s a corresponding member. Yesterday’s hearing was relevant to her many interests. But she doesn’t always attend.
We don’t even really count quorums for subcommittees, because they don’t make recommendations to the Secretary. The quorum issue is really for the full Committee, although I don’t like to hold subcommittee hearings and have only two people there.
Anyway, yes, I think one of the ways we’re trying to do that is to have a member on each of the subcommittees also be on that new working group. But also if you’re here and you’re interested, come on in.
DR. COHEN: I know there are others who are going to be on the working group who aren’t part of the National Committee who would be very interested in both of these topics. I work with Kalahn a lot around disparities issues, and I’m sure she is interested in the SES stuff.
MS. GREENBERG: Great.
DR. GREEN: This relationship between the other committees and the new work group brings up something else that Sallie and I have talked about. We are listening hard at today’s meeting about the direction the Privacy Committee is going. Of course, one of the big issues that came out of the community health system work was the need for this privacy and security data framework.
It looked to us like they have owned that. It’s not that we’re uninterested in it, but I think we need to hear this afternoon — be sure you’re comfortable. If we see that as their being in the lead on that, it’s not that we are uninterested, but now that we know that they really have that, it sort of frees us up to go toward these two directions. Is everyone comfortable with that?
DR. COHEN: Great. It’s a great spinoff. I think it’s wonderful.
DR. GREEN: Len and Jack, have you guys had an epiphany in the last 15 minutes, to say, really, what we ought to do is?
MR. BURKE: I’m comfortable with the privacy spinoff, because I’m a member of that Committee, so I can represent its work here. I didn’t have any further epiphanies on rivers or tributaries.
DR. GREEN: Len, are you okay?
DR. NICHOLS: Mine is not to be characterized as an epiphany. It is to be characterized as hopefully a complementary suggestion. When I get passionate thinking about the community river, my passion is to bring cost to this conversation. Our Committee is named the National Committee for Vital Health Statistics, but I don’t think we can talk about health in this country going forward without making cost central to it. Even if we don’t want to, other people are going to do that.
What I’m excited about is using this initiative to help think about and get communities able to access what the hell they are spending now. I just think that is so important for them to be able to then make all kinds of resource-allocation decisions.
So I just want to make sure that we get cost as a big part of this effort.
MR. BURKE: Cost in terms of what you what you would get from all-claims database?
DR. NICHOLS: All-claims database is a very good start. Frankly, that’s an area we might end up moving toward. I just think, at the minimum, a community needs to equip itself with intelligence tools about how it’s allocating resources. I don’t know how you do that.
DR. GREEN: Let me say this back to you using a concrete example from this Denver group that we heard from. That group is turning very hard on asthma. Organically, three neighborhoods have problems with asthma. Two neighborhoods don’t. One of the things that the community members are saying is, our families are spending too much money on asthma care. There’s got to be a better way. Does anyone have an estimate about how much cash is flowing out of our families and our neighborhoods for asthma care? No one has a clue. But they asked the question.
Isn’t that what you are talking about?
DR. NICHOLS: Absolutely.
DR. GREEN: That fits comfortably for me.
DR. NICHOLS: And that’s in an area where those three neighborhoods recognized that it was an issue. What I have seen in the few cases where certain kinds of data have become available is that people didn’t know they had an issue with low birth weight. This way you can figure this out.
MS. KANAAN: Since my passion has been invited into the conversation, I’ll speak. Also it has something to do with cost.
Just a few words of background. As well as my work with the Committee, I’m involved as a volunteer as a member of a county health and human services advisory board and work on community health data in Mendocino County, California. We just raised close to $50,000 from almost 20 community partners to license the Healthy Community Institute’s award-winning websites, which are called different things. Healthysonoma.com was the one that was showcased at our initial workshops.
At the moment, I think, for a lot of communities, what I see is that, given limited expertise and fragmentation, there are many communities for whom it makes more sense to raise money and license a proprietary database like that than it does to do what communities that work with Bruce are able to do, which is to do everything on a volunteer basis with the expertise and the guidance of somebody like Bruce to help them.
This raises the question of cost. One of the interesting things that I have wondered about, about the relationship between NCVHS and this new initiative and workgroup, is the question of proprietary application and the fact that the federal government, as a matter of policy now, is encouraging developers — they are talking about data access, but I think the implication of that that might warrant a little bit of critique or investigation is the implied costs, then, for access and usability. Those applications are going to cost communities money. It may be well worth it. Our community just concluded that it was. But those things are not going to come free.
So I think that’s an interesting question.
MS. GREENBERG: And, actually, this year the Health Datapalooza had a focus on business models for doing all this.
DR. NICHOLS: I think make-or-buy is absolutely part and parcel of this conversation. Should a county follow Bruce or should a county buy an app?
MS. KANAAN: Ours is licensing an app, essentially. It’s a wonderful app.
DR. NICHOLS: Maybe part of our strategic advice over time will be what parameters should govern those kinds of transactions.
DR. COHEN: The reason why communities have to buy is because, frankly, the states and the feds have abrogated the responsibility to provide the data and the structures and the templates so communities can do it themselves.
I think there have been a lot of opportunities for the feds to leverage what they do. For instance, there’s an enormous amount of information in the warehouse, an incredible amount of information. The feds could develop the apps that will allow communities to use that data rather than have 1,100 indicators, but be able to generate reports the way they want to. You wouldn’t have to be buying proprietary products. I have nothing against proprietary products, other than that sometimes they take the data that we scrape to produce and then they produce these nice apps and then they sell them. Why can’t we just be providing that service to the communities? It would be a lot more efficient and it would be a lot more satisfactory and it would save a lot of money downstream.
DR. GREEN: You are eloquently make the case, which we found and we reported, that we’re missing this infrastructure. The primary care guys in the delivery system have all been starved. They are all fighting over scraps just trying to stay alive. We’re missing something. There’s a big hole in our communities that needs to be filled. We might be able to help define the dimensions of that, alternative strategies for how to build sustainable infrastructure so communities can monitor their progress over time and all that sort of stuff.
This is exciting territory, and it’s timely, I believe. It’s relevant and it’s timely. I’m good to go.
DR. MAYS: I want to put something else on the table. I don’t want to make your file too big and get your administrator too upset. If it gets there, maybe it’s on the next go-round. It really is also my passion.
In Healthy People 2020, there were new areas that came up. These new areas are definitely in need of data collection. As a matter of fact, for some of them, they are in need of data development even. One of them was well-being. Quality of life we’re doing pretty well in, but in Healthy People 2020 — I’m concerned for the Department, because I don’t know, going forth, how it’s going to be ready for Helathy People 2030 — the issue of the measurement of well-being is underdeveloped. NIH, through NIA, has allocated some resources to develop some measures of well-being.
For the community, this is really very important, this issue of well-being. It’s not even just about being sick. It’s a measure, and they want that, not just at the individual level, but this is where having a community measure of well-being — we think about things like social capital, we think about things like social cohesion, we think about social inclusion, exclusion, as some of the ways to get at that.
The quality-of-life part I think we do very well. We have things that are very established. But I don’t know what HHS is going to do when we get to 2030, because this is a new one.
The other new one, which I was trying to chat with Susan about — and Bruce will be able to say — every time, the notice has been so short, I haven’t been able to get in. They put LGBT in as also one of the new things in Healthy People 2020. I think we’re going to do okay with L,G, and B, but I don’t know what’s going to happen in terms of the T. T is transgenders. I think there have been listening sessions. But again, believe it or not, what’s going to have to happen is that the Department really has to meet the midcourse review to talk about where these things are and then to kind of gear up again.
When do they start to gear up for 2030? Do they actually start in 2020 to gear up?
DR. CAIN: I don’t know. Probably.
DR. MAYS: Anyway, we don’t have the data developed very well for this, and this is going to be an issue for the Department. I think the T one probably has to have a little more discussion. They are working on it.
But the well-being has not been, as far as I know, on the agenda. We have done only okay with mental health anyway. We put it on, take it off, put it on, take it off, in terms of a lot of the federal surveys. So we don’t have good surveillance data for mental health. We have surveillance data in terms of Rob’s K6, the psychological distress, but we don’t have it in terms of two of the real biggies, which would be major depressive disorder and anxiety, which are society’s big issues.
DR. GREEN: Does anybody else have something?
MS. GREENBERG: Did you say that we know how to measure quality of life, but not — I know there’s a lot of quality-of-life —
DR. MAYS: I did the IOM report on it. We had to come up with indicators. I talked to Jennifer. I talked to others. Well-being measures are still being developed, like NIA is doing. We don’t have kind of a standard thing that we use and what have you. So we have been doing this, how do you feel? Come on, that’s not just well-being.
Then I think the Gallup people are actually the ones that have been doing this well-being, but it’s a problem — well, I shouldn’t say it’s a problem, because I don’t want anybody to sue me. Anyway, the Gallup people have been doing it, but I’m not sure we are ready yet to use that as a departmental standard.
MS. GREENBERG: Quality of life and well-being are definitely not synonymous.
DR. MAYS: Exactly. They are together in Healthy People 2020, but they are literally in very different places in terms of their development. They are very different.
DR. GREEN: I think we have the eight questions to help inform the Executive Committee retreat. I would like to ask number 7: Is there a specific time urgency?
Sallie and I are passing back and forth that the answer to this might be that the work on communities and learning health systems is very active right now, and the sooner we engage, the better. I’m not sure if that’s the same answer to the question about the holes and gaps in SES data collection — the sooner, the better.
We don’t know of a particular triggering event that says, oh, my gosh, we have to have this done by November or all is lost.
So that’s the way we are thinking about it: Proceed in a workmanlike way, get going, don’t waste time, proceed apace. But we don’t think we have a policy emergency sitting around anywhere.
DR. MAYS: The question would be whether or not the surveys are going to do reengineering. If they are, then you want to do it when they do it, as opposed to putting something in later. It’s very expensive.
MS. QUEEN: That’s happening, but it’s on a sort of survey-specific basis.
DR. GREEN: Do you have any suggestions, Virginia?
DR. CAIN: In terms of timing? No. HIS and HANES are working on redeveloping surveys now, but I’m not sure — in terms of adding new questions, they go through periodic updates, so it’s not like you have to capture them at one particular point in time.
MS. QUEEN: We had a conversation the other day about the survey attempting to add the new standards. It was basically that to put the new disability questions on, we have to take some questions off. We have a time constraint and a cost constraint.
DR. CAIN: There are tradeoffs, absolutely. Everybody likes their own things.
DR. GREEN: Ladies and gentlemen, I think we’re done for today. I think we got the work assignments done, both of them. We will report tomorrow that our plan is to go for a twofer. We’ll self-organize into two groups that take leadership and particular roles. We are poised to collaborate with other subcommittees, the new task force. We’re delighted.
We don’t have a crisis on our hands. We’re anticipating the equivalent of the Susans to help us get our work done —
DR. COHEN: These Susans.
DR. NICHOLS: We will loan them one Susan one hour per week.
MS. GREENBERG: I would say that members are welcome and encouraged to participate in both rivers or streams.
DR. NICHOLS: In fact, I think we will as a matter of course, yes.
DR. GREEN: We’re going to do it as a committee as a whole, because they overlap.
It’s useful for us to focus on communities as users of these data sets and then researchers and the federal statistical community as users of surveys. We have two types of customers here that help guide our work here.
I may be misjudging each of you as individuals, but I think most of the people at the table, if forced to do like Susan Queen has to do — if I put this item on, I have to take this one off — if you had to just do one or the other, work on the SES gaps and holes or work on the communities as learning health systems, I suspect we would sort of divide into two groups with our priorities. We’ll just let that happen naturally so that people get to work where their passions are.
Any comments from our newfound friends?
MR. DAVENHALL: If you have read the scope of work for the new committee, it calls those customers audiences, which is even broader if you think about it.
DR. GREEN: And I like that term better.
MR. DAVENHALL: Is that the same stream you are talking about, in a way, the identification of the community — maybe it’s the audiences within these communities.
DR. GREEN: Let’s use the word “audiences.”
DR. VAUGHAN: An excellent conversation. It’s very timely and going in parallel with some of the things going on in other parts of the Health Data Initiative and things that were discussed during the forum. It’s very exciting to see this convergence coming across.
DR. GREEN: Marjorie?
MS. GREENBERG: Amen.
DR. GREEN: Okay.
Thank you on the phone.
(Whereupon, at 5:20 p.m., the meeting was adjourned.)