[This Transcript is Unedited]
Department of Health and Human Services
Subcommittee on Privacy, Confidentiality & Security
and Subcommittee on Population Health
November 16, 2011
Holiday Inn Rosslyn at Key Bridge
1900 N Fort Meyer Drive
CASET Associates, Ltd.
Fairfax, Virginia 22030
P R O C E E D I N G S (3:19 p.m.)
DR. GREEN: We are going to try to accelerate here. As you may or may not have heard earlier today, we have already had a discussion of this report and there is quite a bit of input. Susan is ready to help us briefly finalize the Committee’s input into completion and finalization of the report. From this morning there is about eight or nine types of categories or corrections, additions or something like that and we are pretty sure we don’t have to debate or discuss all of them but Susan does have two or three issues that she does want to call out. I think we will get started on that. Susan, do you mind, you might just want to run your list of the categories so that everybody can hear those and that way if someone has an additional issue that they want to, we will get it right now.
MS. KANAAN: Okay and Leslie told me that she made a list too, so she is going to check her list against my list. I am basically just initially going to tell you just by way of confirmation all of the things that we raised today and I may miss one or two that came up before the meeting but hopefully I will have caught most everything. I will identify the ones that I think particularly could benefit from some discussion in this Subcommittee meeting.
Justine gave me some suggestions yesterday which she mentioned to you having to do with making a more explicit link in the introduction to the Committee’s visions that we issued at the beginning of the decade or the last decade and the considerable progress that has been made since then. I drafted some language and we will work on that. Then related to that, we will put the figure on the determinates of health fairly early in the paper, probably if you want to look I think it is going to be on page fourteen, tentatively, where we are talking about he diverse types of data. It will be close to the list of data elements that is already in there. Those will be two new inserts and I am working on the language for the reference. The reference to the progress being made will go, I think right at the end of the first paragraph of the introduction.
Justine and Larry both, have suggested reference to the triple aim. I think that belongs close to the discussion of the IOM work on the learning health system which is around pages eight and nine, somewhere in there. I want to talk with Larry and Justine to get clear of exactly what we want to say but that is something else that came up before this meeting, but another change.
Bruce and Vickie both have suggested expanding what we say about healthy people 2010 and the leading health indicators. He read you the language that he suggested which I think is excellent and the thought is that we will put the table. We will reference the table. We will list the categories of indicators in a footnote and reference the table which will be in the appendix.
Bruce also had a suggestion about saying more about the process, the kind of collaborative decision making community organizing process that is sort of precedes and surrounds data use, data collection, data use and so on and I agree with him that that warrants a little more discussion so I am working on a little bit language for that. I will be in touch with Bruce to see if we can capture that. That will go early in the discussion of collaboration and priority setting in section two.
Then we got into our discussion of appendix three. There I think Leslie had a very good suggestion about adding a preliminary paragraph. I wrote down roughly what you suggested and I will work with Leslie on that to get that right. I didn’t write this down and I don’t see Blackford but I think it might be good to have a similar preparatory paragraph for the other appendix, oh that is appendix three. I am sorry.
Linda’s suggestion about health indicators dot gov is a great one and I don’t think it will be hard to find a place for that. I went on the website and they have some very good descriptive language right on the HHS website so I will pull a sentence from there.
Then we had many suggestions for a graphic on page nineteen. It’s interesting how different people see it differently which I think is a sign of the success of the graphic rather than the failure. There is a general tone to or thrust to the recommendations and I hope that working with the graphic designer I can develop something that will meet your requirements there. Anybody else who wants to give me further suggestions like Blackford I will be interested to hear.
DR. FRANCIS: Susan, I don’t know if you are going to move here but I think that comments went beyond redesign of that graphic to graphics more generally. We should probably have a conversation about that. For example, Blackford’s suggestion was as I tried to understand it, it was actually for a graphic a step back which was about how can a learning system for health use data. Then the graphic that we have here, so as I was sort of envisioning it, it was what are all of the data inputs. Then what are some of the data outputs of a learning system for health and where are the feedback loops and things like that. That is the way I was interpreting Blackford’s idea. Then we have the graphic that you did which is something about what are all of the essential components and we had a suggestion from Walter. I think if I have got this right that some of them were process and some of them were infrastructure. Anyway that is all. That last thing is tinkering with the graphic you had but Blackford’s suggestion was another graphic.
MS. KANAAN: Thank you. I didn’t get that so I appreciate that clarification. I wonder, it is not a problem to create another graphic but I wonder how redundant this new graphic that you are talking about would be with the influences on health graphic that we are going to add some 21st Century health statistics report because that is about data coming from different places, different sources on different topics, on determinants of health.
DR. FRANCIS: But the learning system might look different.
DR. GREEN: Let me ask Blackford. Blackford, do you have a graphic that you want in the report?
DR. MIDDLETON: Not in final form, no but I have some ideas.
DR. GREEN: Marjorie do you know of a graphic that does this that is in a prior report?
MS. GREENBERG: Not in NCVHS.
DR. GREEN: Is there a graphic from a prior report that would fill this niche? I mean an existing thing that is published. Does this need to be designed?
DR. CARR: If we are going to have a graphic for this community health initiative, is there a graphic that we have already used that would plug in or are we building from –
DR. GREEN: We are talking about another graphic that Blackford brought up in the morning’s discussion that needed to position. Blackford, why don’t you say it again.
DR. MIDDLETON: What I was thinking of was that in a way this talks about building blocks and a variety of different components that have to work together for this notion of a learning health care system. It is fairly opaque though to the learning process itself. In a very primitive or primary way can start with observation and then naming and then encoding or experimentation and then feedback, then revision in a ritual cycle of learning, the standard sort of model. That I don’t think that was reflected here. While all of these parts and pieces I think are important, in a way they are attributes of the learning system that is collaboration and coalitions as opposed to the primary functions of learning. That is where I was struggling.
MS. GREENBERG: The only thing I could think of was there is not a lot about using clinical data but you are talking about including the 21st Century vision graph, which I think is a good idea particularly because we heard so much about all of the different determinants of health. Do you want to bring back in the NIH one too? Is that relevant?
DR. MIDDLETON: I looked that up from the IOM learning health care system and it is a very pretty picture. It is really highly produced. I don’t know if you all remember it. I am trying to get to it.
DR. CARR: Which one are you talking about?
DR. MIDDLETON: It is in the IOM learning health care system report.
DR. CARR: It is an NCVHS?
DR. MIDDLETON: It is an IOM document, engineering a learning health care system.
PARTICIPANT: But it is about health care.
DR. MIDDLETON: Yes.
DR. GREEN: My belief is that that one is not going to work. So I think the answer to our question is, is the preparation of another thing and Blackford, fix my language here but I think it is we want a graphic that visually depicts the learning process itself. Is that correct?
DR. MIDDLETON: Yes.
MS. GREENBERG: No small order.
DR. GREEN: No small order. Blackford has volunteered though.
DR. CARR: So let me ask, how does that help this report? If we talk about the learning process, do we then link it to the elements, the gaps in the community or how does it move the agenda?
MS. MILAM: It also speaks to process, but I guess it comes down to whether we want to reflect the functionality of learning health system versus the attributes.
DR. CARR: What is it that we are trying to say? You will have a learning health system if you have all of these or and is it the infrastructure? So you need the infrastructure and you need the attributes and so that may be what we want we want to say but we don’t say it in this we are not separating out what are the attributes and what is the infrastructure.
DR. MIDDLETON: Another approach here which I think we have all discussed before would be to use the data information, knowledge, wisdom paradigm, that pyramid with appropriate annotation can represent a learning paradigm.
DR. FRANCIS: As I see it, that goes to what we are trying to do and it is not a learning health care system but it is a community learning how to improve its health.
DR. GREEN: I have a suggestion about how to deal with this. We are not talking about a brand new thing in the report. We are talking about trying to depict what we heard in our hearings and what this report is about and a particular piece of it that we are completing that probably would improve the report if we had a graphic that had a picture of that of some sort. I think that is our conclusion. So a strategy for that that I would like to suggest is that we are going to put ourselves on about a ten day timeline here to finalize this report and that we head that direction and we deputize Blackford to work with Susan on this and anyone else who wants to volunteer for it. We are not talking about that graphic at all. It is a totally brand new graphic that doesn’t exist.
MS. GREENBERG: On the learning process for health?
DR. GREEN: Yes.
MS. GREENBERG: Is this something you think you heard about at the sessions?
DR. GREEN: That is what Blackford was just saying about how we describe that. We talk about it but do we, Blackford’s effort is to call it out and distinguish it in some way, correct?
DR. CARR: You are talking data, information, knowledge, wisdom?
MS. KANAAN: Or in some other way. I think I understand. I think Sallie put her finger on it when she said and we have talked about this all along. This one that we sketched out initially is a description of a process involving the different components that we do indeed talk about most explicitly in the report but to actually talk about the learning process would be a different graphic but I see no harm in adding it. I mean it won’t detract from this.
DR. CARR: Or maybe we could annotate the data with something of what are the things that you need. I mean we have data but without the data definitions or without the data aggregation. You can’t get to information without the data display. You can’t get the knowledge you know something like that.
MS. KANAAN: We are getting into other topics then what we discussed in the hearings and it is almost beginning to sound like it belongs in conjunction with our appendix three where we get into more analysis of the process.
DR. CARR: I think we have what we heard and we can aggregate, synthesize and put our wisdom on it. It may be an aggregating function of what we heard.
DR. GREEN: It is a presentation function of the report. We are not trying to come up with a new idea or at least set of ideas. We have a working hypothesis that we can improve our report by adding a figure of some sort. This question will answer itself very quickly. If the figure works, it will work. If a figure doesn’t work, it didn’t go in the report.
DR. MIDDLETON: There is a figure from the engineering and learning health care systems which is not pretty. Let me see if you can see it and I will describe it. It shows the pyramid on its side so this is data, information, knowledge, wisdom with operational, tactical, strategic and systemic and decision making range. I don’t think the bottom axis is useful, decision making range but it does depict the relation.
DR. FRANCIS: What I would want to see us enrich that with is this is specifically about community health
MS. GREENBERG: That is my question.
DR. MIDDLETON: Specifically about what?
PARTICIPANTS: Community health.
MS. GREENBERG: If you can tie it in with the community health idea but otherwise to me it is a little out of scope.
DR. GREEN: Ok so we know what we are going to do about this.
DR. MIDDLETON: If we don’t find a useful image I think just to make sure.
DR. GREEN: Find an image we can adapt and to create something.
MS. KANAAN: Another thing I would add, I am fine with the project, but just to point out to you that if we are going to introduce new terms and a new point such as data, this lying on its side pyramid that you have just seen, that is a very nice point that we have made in many contexts but in fact we do not discuss that at this point in this report. I considered it and decided we did not need to get into that data becomes more useful when it is information blah, blah, blah. You know that whole process which Carl White used to talk about so long ago. We don’t go into that kind of analysis or whatever. There are some implications I think for the text as well. It is not just a graphic but we can certainly see what we can do if we can make it work.
DR. MIDDLETON: I just want to be clear. If we don’t find something which looks useful without doing a lot of a rework to the document, let’s just use this existing image and maybe clean it up.
DR. FRANCIS: I am happy to help on this one. I am happy to help with the new one and I actually think it would go exactly in pages seven to nine. So look at page eight, in a learning system people, actions, results and knowledge.
MS. KANAAN: Yes, that is where it goes. You are right.
MS. KLOSS: There is a very classic diagram, The Learning Loop, by Cole Heathcliff, educational theorist. It is kind of one of those things like your 1968 report, this classic called the learning loop.
DR. MIDDLETON: It is a learning cycle which he calls, take action or learning —
MS. KLOSS: It is adaptable.
DR. GREEN: So the group that is going to work on this has grown. Anyone else just ready to dive in?
MS. KANAAN: We may be able conflate the two when I see that. Although I think what we have been trying to show is this. So maybe I shouldn’t have said that. We are trying to show that every one of these elements could affect every other one. The learning cycle tends to go, is a single loop going one direction so maybe they are different. We have a little task force here.
DR. GREEN: Let’s not try to solve this right now, but we do need to exhaust your list and Leslie’s list. What else is on?
MS. KANAAN: Do you want to go back to our list of things to do? We are almost done. The federal role, there are two things. I think the Committee accepted Linda’s number twelve as is, if I am not mistaken and number eleven, Leslie wants a different word than the word guidelines. Bruce and I talked a little bit about that. That was his language. He talked about what he was trying to convey which was about strengthening local communities’ ability to collect local data. That was the idea so maybe I will check with Leslie off line and see if we can find language that works for that. Then the final piece.
DR. COHEN: Excuse me that was to –
MS. KANAAN: Excuse me that was about broadening. I beg your pardon. Right, thank you.
DR. COHEN: Leslie, if you have any language that does not seem so restrictive or puts us in a situation that would mean to produce.
DR. FRANCIS: I would just take out guidelines and just have it be proactively develop.
DR. COHEN: Okay. Proactively develop resources.
DR. FRANCIS: And nonprofit hospital.
PARTICIPANT: Bruce, what did you change?
DR. COHEN: We were going to ask you about language but the intent, as I recall when I wrote this was the federal government, I won’t use the g word but can help with resources to sort of empower communities to do local data collection, provide templates, sample frames, data collection instruments, do training that will really encourage and allow communities to do their own data collection. That would broaden research and development of small area data collection. This is the federal role now, the feds providing that kind of assistance, technical assistance and methods.
DR. GREEN: I thought the issue was that there was another word besides broad.
MS. KANAAN: We talking about two different things and in recommendation two, non-recommendation two, high level recommendation two, it was broaden and I think the one that you were talking about Bruce was. You were talking about two?
DR. COHEN: That was the underlying concept.
DR. MAYS: That is what I needed to know because I didn’t have a sense. How about facilitate and provide resources for the development of research and small area data.
MS. KANAAN: So number two we are going to put facilitate and provide resources for the development of and so on.
DR. FRANCIS: I have one other question about two which was that I took at least some of the conversation with Jim early this morning to be about how increasing the HHS’s finding trouble in releasing local data because of the privacy concerns and at least the way I was thinking about that is what I think is really important is to try to figure out how to do both. Both have data that is meaningful at the local level and solve the privacy question.
DR. GREEN: I think we have got idea. Let’s let Susan write it.
DR. FRANCIS: I would like to have that theme in here.
DR. COHEN: That is sort of under number eight rather than two.
DR. MAYS: That is a really different idea than here because it is like what the feds are doing is like New York does at NHIS and California does one and I think that what the push is for local groups to be able more to collect local data as opposed to the feds releasing data.
DR. FRANCIS: Right except that the problem with privacy protection is they are both whether you have got the local data or whether you are releasing the local data. It is privacy about local, I mean when you have got small cell data.
DR. COHEN: It is interesting when you stimulate local data collection what happens whether doing a community survey by a community requires higher be review and how they de-identify the data and create impressions. I think at some level I feel that is a community issue as opposed to the concerns for the federal data that are collected and then disaggregating it in a way that might go.
DR. FRANCIS: Could we put yours in eight? You are right that they are different questions. There is a similar solution needed in both.
DR. GREEN: I believe we are off the track right now. These are non-recommendations that are part of the report and we want to stay at a high level. We are diving down into what these things mean and we are game to bring more and more into them. That suggests to me that we have got the right things in there because you want to do more with it and the next step sort of thing. That is right where we want to go. But for here, this can be pretty generic. In fact, it needs to be fairly generic and that is where we got to last time. That is how we got to this list is we decided that his how we were going to do it. Now we are chomping at the bit to keep going which is a good thing. We don’t want these to start spelling out too much.
MS. GREENBERG: So how have we left this?
DR. COHEN: So eleven we just take out guidelines.
MS. GREENBERG: Eleven I think Leslie had a rephrasing which was fine I thought.
DR. FRANCIS: Take out guidelines.
DR. COHEN: Take out guidelines and put in helpful materials.
DR. SUAREZ: This is specific to nonprofit hospitals. Do we need it? We need to move it out.
DR. COHEN: I am happy to say all hospitals but the ACA language is specific to nonprofits.
DR. SUAREZ: I totally agree. I am just worried that this is holding out a specific item. We are trying to be generic and broaden things, research and development of small area analysis and then start jumping to nonprofit hospitals doing community assessment.
DR. GREEN: So you could just take out nonprofit, is that what you would prefer?
DR. SUAREZ: I think it needs to be develop guidelines to assist health care facility to comply with community’s assessment.
DR. COHEN: We do need to use the word guidelines and I guess what I was trying to create was the connection specifically to ACA and how the community needs assessment links into health care reform because that is not something that is normally thought about and particularly from the providers point of view. I totally agree with the point that it would be great to broaden this recommendation. Can I use the word broaden in this context? But this is meant to be kind of specific around the linkage to ACA.
MS. GREENBERG: I think it is kind of opportunistic and I would support it because I mean it is something that is actually just now being required and it fits in this. If you make it too broad, people will roll their eyes. This way it might get someone’s attention, but this is a requirement and that there ought to be adequate resources.
DR. SUAREZ: Maybe to put in a footnote the Committee’s affect that it is a requirement you need to cite ACA, section whatever, provision whatever.
MS. KANAAN: I think it is cited because this is not the first reference to it but I will make sure it is cited.
DR. SUAREZ: Don’t cite it to ACA. Cite the specific section, subsection and paragraph in the ACA that references the need to do community needs assessment.
DR. GREEN: So you want to add a citation there.
DR. SUAREZ: You also need to otherwise the people won’t know what.
DR. COHEN: In an email I sent I have the section and the direct quote from the ACA.
DR. GREEN: So Leslie what is on your list?
MS. KANAAN: Paul?
DR. TANG: I wanted to add there was a discussion about one possible federal role function. Is that something that would be appropriate for this place or not appropriate?
DR. GREEN: That was the problem we had before.
DR. CARR: Paul, was your question does this citation belong in the federal role?
DR. TANG: I will write it.
MS. KANAAN: Okay, thank you.
DR. GREEN: That would be great Paul. Sorry we just can’t understand what you are saying but we want to. I am sorry, Paul.
MS. KANAAN: While we are waiting for Paul’s input, the final thing on my list is Walter’s point about information modeling which was to become a new item on this list for the federal role and we haven’t had a chance yet to work on it but we will. We will keep it concise.
MS. GREENBERG: Did we discuss twelve?
MS. KANAAN: Yes, I mentioned that first. I believe that the Committee accepted it as is.
MS. GREENBERG: Provide some sort of reward to communities.
MS. KANAAN: It was discussed during meetings. Are you still comfortable with it?
MS. GREENBERG: What do you mean by reward?
MS. KLOSS: The more positive reinforcement.
MS. GREENBERG: You left it vague.
MS. KLOSS: Yes, I did, reward or recognition or something that is a positive focus on accomplishments.
MS. GREENBERG: Were you thinking about the type of _
DR. COHEN: More of an acknowledgment or incentive?
MS. KLOSS: I wasn’t thinking of dollars, but I was certainly thinking about publicity and recognition.
MS. GREENBERG: This could be anything from every community who does it getting some kind of incentive, payment or something to one community a year getting an award. I guess I am not exactly sure because this could be an expansion of what Todd Parks has done with his competition.
MS. KLOSS: Recognition might be vague.
MS. KANAAN: Reward with recognition?
MS. GREENBERG: The recognition could be financial. It could be an award or it could be a lot of different things but the word reward to me right away made me start seeing dollar signs.
DR. GREEN: We want to make sure we have got the idea but the idea of what you want to see in there is the 2014-5 stellar communities get the HHS award for being outstanding community learning health.
MS. GREENBERG: You could have 30 or 40 who have some meaningful.
DR. SUAREZ: Create an environment that recognizes community that use available data to improve health status. It is really creating an environment that recognizes that.
MS. KLOSS: Well to motivate change.
MS. GREENBERG: It is actually creating some form of recognition, not just an environment but create some form of recognition.
DR. CARR: I have Paul’s comment. He said there was a suggestion that Marjorie seconded about a federal role for convening local communities working in this area to both share best practices as well as develop harmonized requests for federal help. Is that appropriate here?
DR. GREEN: Why not?
MS. KANAAN: That was an email. My apologies, Paul. That kind fell through the cracks. So do you want to read that again for everybody?
MS. GREENBERG: We should have added that one if you were adding one.
DR. CARR: So this would be adding a federal role of convening local communities working in this area to both share best practices as well as develop harmonized requests for federal help.
MS. GREENBERG: Which could be a form of recognition, actually just by even bringing them in for such a meeting.
DR. GREEN: Are we at the end of the list?
MS. KANAAN: The end of my list. Leslie?
DR. MAYS: They actually are already doing that. The data collection and sharing of best practices is one of the goals for each of the regions. You can put it in. I am just saying it is already.
DR. FRANCIS: So all the other notes that I had related to next steps, they fell into two types. One type was dissemination of this report.
DR. GREEN: Leslie, can you hold just for a second because that is where we want to go desperately but let’s close this. The first next step is what is going to happen now.
DR. MAYS: I just have a few other things to add. On page one, fourth paragraph, you talk about opinions of local citizens. I just suggest that you just do community members just throughout so that we don’t get into the citizen/non-citizen thing.
The next paragraph it says as they try to leverage their data and I think their is supposedly referring to data that is in their community but it sounds like it is their data and it doesn’t belong so I would just suggest maybe moving that.
Then the other one which was kind of bigger thing is that you talk about determinants of health and I didn’t know if you wanted to do determinants of health or social determinants of health because social determinants issue does fit with the community issues bigger and it is a better fit than just determinants of health.
DR. GREEN: I would like to push back on that one just a little bit but I am totally persuadable. We did not hear people saying that they wanted to restrict their community activity to the social determinants of health. They were talking about whatever it is, environmental issues, what would be classified as a toxic waste, not exactly what goes in most lists of social determinants. They are all interested in getting access to health care. They were not restricted to in that and so I personally think that not modifying determinants is more faithful to what we heard. The rest of you who were there also and I am happy to yield to you.
PARTICIPANT: I have an attachment from Paul.
DR. GREEN: I want to make sure.
DR. MAYS: I think it is different but I wasn’t at the hearing so you know let’s keep the integrity of the hearing.
DR. GREEN: So back to Justine or is this Paul?
DR. CARR: So this is Justine speaking for Paul. This was entitled original suggestion and would the group consider recommending a short term catalyst action and yes if this is something the group is interested in. We might want to either prune or lump some of the other recommendations so that it doesn’t add more to the list.
DR. GREEN: I can’t imagine Paul proposing to lump or prune. Did any of the rest of you?
DR. CARR: As with all organizations, to make recommendations particularly to the federal government that require a lot of action and potentially lots of money, one always worries that it won’t go anywhere because of the amount of effort and money it would take. One of the things we observed and commented upon is how much local energy there is in these communities. Do you think that one of the things the federal government could do which doesn’t cost very much is to convene a summit? Oh, so Paul, this was just the language.
DR. TANG: Correct.
DR. CARR: Okay, so we don’t need to. I will just forward this to Susan to have the larger description of what you were saying.
DR. GREEN: Paul, are you still there?
DR. CARR: You sound very clear now.
DR. TANG: Yes.
DR. GREEN: Okay, we got it. Thank you.
DR. MAYS: I just have one more under building of trust. I was suggesting that we say informing community members as opposed to educating.
DR. GREEN: Ok next steps, I will start the first thing and then you guys will keep going. Try this out. We talked this morning about how we need to put this on a short timeline. Susan would have ten to fourteen days or so to finalize this. What do we do with the finalized version and this morning we said we are not going to hold another meeting. It is important that this get out. We want to move it out of here. So several months into this, I am going to speak just for myself, not my co-chair or anyone else here. I have developed complete confidence in the following. I think it would be okay now for the Subcommittee to hand this over to Susan and her writer and her staff person to do this, authorize her to talk to any of us to contact us and the promise that we will respond quickly to her with requests for clarification or help with something and then that she takes this to Justine and Marjorie and that we let Justine and Marjorie sign off on this and call it a day.
MS. GREENBERG: Not the Executive Subcommittee.
DR. GREEN: I think as far as I am concerned, if you are okay with it and Justine is okay with it, I am okay with it. If you guys want to do something different this is the time to speak up.
DR. CARR: I think whenever we have deviated from protocol we end up with unintended consequences so my suggestion would be that we put the Executive Subcommittee on alert that they will get a 48 hour turn around time once it is done, send it out and they can send the changes to us and we can decide whether they are substantive enough to make a change but the goal being that this is plenty ready to go. I find that it is just from time to time someone finds some glaring thing that everybody who looked at it too many times missed. So I welcome that second look but your point is well taken. We are not going to wordsmith. We are not going to make new diagrams. Once Susan concludes with the input of what we have, we will get a quick thumbs up and move forward.
DR. GREEN: Okay, so our next steps to this will be Susan does the hard work. It gets sent to Marjorie. You guys send it to the Executive Subcommittee. The Subcommittee has a couple of days to respond and then Justine and Marjorie say it is good to go.
MS. GREENBERG: What you want to do about the cover letter? We have had various discussions. It could just be a very short cover letter like a bread and butter letter or something but this is what we are presenting you and something like this Committee feels this is a very important area and will continue to explore it or whatever.
DR. GREEN: We had a pretty good email discussion about the content.
MS. GREENBERG: We refer you to the suggestions of possible federal roles or something like that. If you want to deputize the three of us, you could draft the cover letter, right Susan of that type and then we will just finalize it with Justine.
DR. GREEN: That sounds perfect. Okay, so next steps?
DR. FRANCIS: Before we do that there is one little needle that I raised a couple of times and it didn’t go anywhere but I will just raise it because of what Marjorie said. I think we should always call ourselves NCVHS rather than going back and forth between NCVHS and the Committee. The reason I think we should do that is I want folks to quote us without having to put scare, brackets NCVHS. So if we say the Committee says such and such and somebody wants to quote that part, they are going to have to indicate which committee.
MS. GREENBERG: I think our writer feels that stylistically it adds a little variety to say NCVHS and the Committee. But, we don’t by the way. At least we did get agreement several years ago. We don’t say the NCVHS.
DR. FRANCIS: I just wondered if that resonated to anybody. That was my reason for it.
MS. GREENBERG: All of the Subcommittees seem to use the term the Committee.
DR. FRANCIS: It is good writing, good writing.
MS. GREENBERG: It is a point well taken.
DR. CARR: I think that when you go back and read our documents especially ones written by Susan, they are very appealing because of the style and the flow and I think that I would rather defer to Susan. I would keep it to NCVHS or the Committee and you know better. I would it not use the word its thought was. It is the Committee’s thought was.
DR. GREEN: Yes, I don’t like the members.
DR. CARR: It is the Committee or NCVHS. We will limit it to those two. We will avoid the word its and the members. I think that NCVHS doesn’t role off the tongue and when you are repeating it a couple of times in a paragraph it begins to sound strange.
MS. KANAAN: Especially in the preposition form.
DR. CARR: Yes, of NCVHS’s, apostrophe s.
DR. GREEN: Our action on tomorrow morning on Population and Privacy committees around this report will be able quickly not all almost everyone here but we will then formally inform everyone about the expected adjustments based on yesterday’s discussion and this afternoon’s discussion and then we will report our plan for the process and the timeline for that and then we ask for approval. Is that correct? Okay.
DR. FRANCIS: So here were the suggestions for dissemination. The National E-Health collaborative webinar, the IOM’s report is coming up and needs to be cited. A presentation at the American Health Association, but I sometimes review for them and panels probably the review process suggestion and so on probably they are due in mid February.
DR. MAYS: This was a very specific group that does the data.
DR. FRANCIS: So if we were going to have it there though, we would have to look at the submission time for a panel, submission dates. Then this document is a vision, the substantive stuff is should we do a mega letter base or should we start thinking about smaller letters based on this.
PARTICIPANT: Do you mean letters to our system?
DR. FRANCIS: No, no, no. Those were the National E-health Collaborative, APHA and IOM. That was some dissemination stuff so that is one kind of next step. The other kind of next step is this is a vision document. This is not a document with specific recommendations but the thought was that the Privacy Subcommittee and the Population Subcommittee could either go their own ways with respect to letter recommendations or we could work out one of those letters like an NHIN letter which has many, many, many recommendations that we then follow up on.
I guess my thought is it would be better to go with smaller scale ones and do them one by one but I could stand to be corrected on that.
DR. COHEN: A couple of comments, with respect to dissemination, I think we should also target other kinds of community focused health groups, the healthy cities movement folks. There are lots of folks doing PATCH, the folks at CDC who were really focused on community needs assessments. It is not our traditional target audience but this I think has a lot more resonance for a broader group so I think we should look there.
I think what Jim was saying this morning and the content is on page 27 through 28 is very valuable visioning statement. I would like us to just focus on that as the first effort to inform the Secretary about what our vision is saying that we might follow this up with more specific letters flushing out each of these with the specific recommendations about how to do these things.
DR. GREEN: So I hear him speaking in favor of breaking it up into pieces instead of one mega letter.
DR. COHEN: Yes, but the initial one short letter with we have gone through this process. It is very exciting. This is our basic vision and I don’t know whether that is being transmitted with the report itself or is it a separate letter? I am unfamiliar with the process but I think something really short and sweet to begin with that sort of lays out the broad context with more details to follow.
MS. GREENBERG: That I think would be the transmittal.
PARTICIPANT: This is, I think should be in the cover letter.
MS. GREENBERG: It is like a cover letter but I mean it doesn’t just say attached. It could be but I envision it as you described.
MS. KLOSS: Is this a printed report with a cover that looks like the other NCVHS reports? I think it should-
MS. GREENBERG: Are we printing it? Is Debbie here? Debbie, there you are. I mean we are not going to print it the way we, I don’t think we would publish it or want to but maybe we can discuss it, the way we have done like the real report.
DR. JACKSON: We are kind of in a new agency and what the dissemination plan and what you were mentioning about webinars and everything, I think that would be a great way to hit audiences and like you said, we hadn’t generally appealed to but something that I thought about yesterday when I saw the panel discussion and the reactions of people to the individuals, the excitement, the range, the breath. We seem to be the most hidden tucked away, prolifically busy, productive committee people haven’t heard of. You are here and you see a little global. What does it mean? Until they are bringing you something that you can really get your hands on so I am really excited about getting this out in the next couple of months in the new electronic webinar Liz King sort of format.
MS. KLOSS: PDF electronic documents.
MS. GREENBERG: What you think about so sometimes we have had the folks at NCVHS just do like a nice cover on an every year stock?
MS. JACKSON: We have all kinds of mechanisms to get things out faster than the usual.
MS. GREENBERG: Them we could send it to the one mailing list. Then we do want to get back to all of the communities and NAHDO.
MS. KLOSS: I would send it to all of the HIEs that federally funded group because they are immense.
MS. GREENBERG: That’s a nice idea. Is there a list of them?
PARTICIPANT: And all of the CTSAs.
MS. KLOSS: All of the what?
MS. GREENBERG: Oh, the translation well, okay. What I suggest is to start sending these ideas to Debbie. We can work with Susan too on maybe some letters or however we want to do it. Debbie is good at that also but and then if you can point us to where you know there is a distribution list or on the web or whatever, give us that also and we talked about we the use of E-Health Initiative, no E-Health Collaborative, the one that AHIC became and then we had thought maybe with NAHDO also doing a webinar. So in a group like that yesterday, I was surprised how many people were saying oh, we wish we had known you guys were around only for 62 years. I guess it wasn’t long enough. As Denise Long said to me, a lot of these people as one of them described himself actually are in the basement in the health department or whatever laboring away with the leaky pipes and they are in Louisiana or Oklahoma and not in Massachusetts either.
DR. GREEN: And they are also pretty young.
MS. GREENBERG: North Dakota so.
MS. KLOSS: It is harder and harder to get attention and I think on any thing like this we probably should formalize it a little bit and do a communication plan and put some targets and deadlines on it and gnaws and all of the association execs. You can do a lot of work and it doesn’t go anywhere is you don’t put that extra effort into getting it in everybody’s hands.
MS. GREENBERG: No I mean we have talked about this for years and even attempted to beef up our dissemination strategy but I guess other things have overtaken it. But this is something which we really do want to try to get it out.
MS. MILAM: So the plan is to get the ideas to Debbie? Another thing we are at 4:15 so I propose that we continue jointly through discussions of next steps. You know do we continue jointly of populations and privacy or there are a number of recommendations that came out in the federal role area as well as NAHDO. Do we want to vet any of those? What do we see at this point?
DR. FRANCIS: It would be my suggestion, why don’t you and Larry sort of take the lead until about five or ten after five considering next steps with us as your helpers so to speak from Privacy and then Linda and Mia and I would do the same with you all as our helpers and see where we are. Does that?
DR. GREEN: It is okay if don’t take all of that time.
DR. FRANCIS: If you don’t want it. We have got plenty. We have a whole where did we come from and where are we going?
DR. CARR: Can I just ask, Jim had some specific requests today on the tasks of the Committee. Have we incorporated them?
MS. GREENBERG: One thing that would be good in relationship to this, too is if you feel you want to have a hearing or workshop or whatever on any of these topics over the next probably wouldn’t be before March because we are talking about the SES hearing and I am hoping we will have a little time to talk about that.
MS. MILAM: I was just thinking we do need time today.
MS. GREENBERG: Yes, if we are going to have that hearing in January, I don’t think we have a date yet but.
DR. FRANCIS: I was actually going to send some material out because I thought we were supposed to talk about it today.
MS. GREENBERG: We are. We need to.
MS. MILAM: The first part of our agenda for the four of us was to continue with the CHIP report but as you can see we are still in the CHIP report. So I was just trying to get a sense of how to use the rest of our time.
PARTICIPANT: The hearing is scheduled in January?
MS. GREENBERG: I don’t know that we have a date yet.
DR. FRANCIS: We are trying for the last week of January.
MS. GREENBERG: But if we are going to be able to give feedback that would be timely to the department, we were told it really needed to be by our March 1, 2 meeting which means we need to hold this hearing I think around by the end of January. This was the input to selecting a standard that population surveys in the department could use on SES, a low hanging fruit approach from the point of view of something that could be recommended in the short term but then also to have initiate as I understand it from those calls we had a more expansive or what we might want to work towards in the future.
DR. CARR: Is Susan Queen still on the phone?
DR. QUEEN: Yes I am and somebody has been sending out some potential dates toward the end of January for the hearing. I don’t know what the results of those dates have been but I know I have replied to a couple of requests.
Agenda Item: Subcommittee on Population Health
DR. JACKSON: I have the responses. We seem to have blended into the Population Subcommittee meeting so we will let the record show that and confirm that the people on the call. Is Paul Tang still on the call? We have got Susan and there were several other people whose names I didn’t get but I want to make sure that is in the record. Could you identify yourself again for the Population Subcommittee meeting.
DR. TANG: So am I supposed to leave now? Oh.
MS. GREENBERG: No, Privacy will be meeting at five.
DR. TANG: So come back at five?
MS. GREENBERG: Yes.
DR. TANG: Okay, thank you.
DR. JACKSON: I have a doodle poll for populations that Nicole sent out and we seem to have some nice dates around the 24th, 25th, 26th of January that is a Tuesday, Wednesday, Thursday so we can kind of look in there and see just who we are missing and go from there. Otherwise we have to start going into February and I think that Quality was given some time in there.
MS. GREENBERG: One thing at a time so Susan is on the call and is there anyone else on this call now? Is Jacqueline Lucas on the call?
MS. LUCAS: Yes.
MS. GREENBERG: Hi, Jackie. Okay, and anyone else? Okay. So how about if you take like ten minutes on this discussion of next steps.
MS. MILAM: We were thinking since Susan Queen is on the call that we shift to a discussion of the hearing. We have got to hold the hearing in January. We have got to plan it and then get back to CHIP at five. Can we discuss joint next steps at five with Privacy? Would that work?
DR. FRANCIS: I think you should do your business. When you are done with SES we could talk about what a letter might be that might be an area of joint interest and then Mia has a presentation that she has worked on about where Privacy has been and it is going but I think we should start at about five or ten after five that we can then use on the Privacy side to think about next steps and the CHIP as well as other next steps.
MS. MILAM: So let’s focus then on SES. Vickie, that suggestion comes from you initially hasn’t it?
DR. MAYS: Yes, and I thought that is what we were going to talk a little bit about so I have sent to the Committee, I think Janine did it by email an article that actually was the Pritchard article which actually talks about social economics indicators that matter for population health. So I thought for everybody that kind of needs to be kind of pull together for a basic one on one that this would be a great article. This is also the article, the material that appears in the Institute of Medicine healthy people 2020 leading health indicators and it has an intro before. Again, that is the next place for people to go so that you get an introduction to why does this matter. We cite the relationship between SES and health so I think that that is kind of a nice beginning.
I thought that a couple of the issues were for example whether or not now remember, it is too bad Jim is not here, is Susan is one the phone. Susan can answer this. Whether or not what Jim is looking for in terms of this is indicators and they want, for example, an index or whether or not what you are looking at is items and what you will see in this is the type of items that individuals think should be measured in order to talk about social economic status.
Third issue is whether or not what you want to talk about is social economic status or whether you want to talk about social economic position. The real emerging data really says that a lot of the adverse events that occur in childhood are really related to the health that you are seeing later in life so then it is a matter of looking at SES as position as opposed to current status. There are a lot of issues around current status. The discussion I understand it for now is actually talking about these things within the context of the surveys. We are not talking about EHR administrative data. What I view then that maybe the question is whether to look at position rather than status if we are talking about the surveys.
DR. QUEEN: We are. I don’t think Jim is talking about an index because the standards that just came out, we are following on those that were from the Affordable Care Act and they are limited, at least at this point, to the national population based surveys so you are looking at what can you capture in a survey that wouldn’t be something that would be necessarily too burdensome that would be able to apply across the spectrum of surveys conducted by HHS. So the more complicated it gets, the more likely it is that they would not be implemented. So we are trying to start with what items would be best that we may already be collecting but they may not be collected in a standard way. So that is where we are starting. Vickie, I would definitely want your input and the Committee’s input with regard to the socio economic position, more information about that and how that is measured as we move forward.
DR. COHEN: How are you defining socio economic position?
DR. MAYS: Social economic position usually looks at the issue of over the lifespan so what you would want to know is a question of the person’s economic status when they were younger. I think the only change is that status says how much, for example you would ask how much money do you make. It asks for income. In socio economic position you might say something like what was the income of your parents when you were growing up or what was the income or what education. You can do it by doing family education, family income. You can do it by sometimes in terms of neighborhoods people have grown up in. You can do it, so there are a variety of things. What you are usually doing is asking about.
MS. GREENBERG: Do you ask position? I mean if you ask position, first of all do you I guess sort of one simplistic question I would have is do you need to ask more question for one to the other. Do you sometimes ask socio economic position like about when you were a child and not ask anything about your current socio economic status?
DR. MAYS: You would still ask about current because it depends on first of all I don’t think we would ever not ask those questions given that they have been in the survey for so long. So I think what we are talking about for position is looking at surveys that ask questions about family, parents, or past. There are some surveys that do that and I think it is a matter of helping people conceptualize what are the ways in which to do it. For example, when you talk about SES, people approach it in many ways. Some people will do it only as income. Some people do it only as education. So I think part of what you need also is just a little bit of guidance of if you have these variables you could actually do this as SEP. If you have these variables you can do it a SES and to point out which of the set of surveys probably would allow you to do SEP versus which would only you to do SES.
MS. GREENBERG: I must say I had a hard time understanding you, Susan, because of the audio situation we have in this room where we are just having a difficult time even hearing each other or understanding each other to some degree let alone people on the phone. But, I would think that this hearing as the Committee was going to have, would want to explore both.
DR. QUEEN: Yes.
MS. GREENBERG: And also focus on at least initially measures that are used in some that have been vetted to some degree in existing surveys. Then it might be that you might want to make a recommendation as to which way to go or to go both, include both. Would you agree?
DR. QUEEN: Yes.
DR. MAYS: That would be my opinion is that even though I think in the terminology they have only been using SES but I think that you really want to say SEP and SES and then I think really what it probably will come down to is that you can get, if you don’t want to do burden you can get SEP in this group of surveys and you can get SES across all of them but then the issue will be the extent to which there is going to be a standardization because that is the big issue.
DR. COHEN: That was the question I had. I guess I would like to have the ask be more explicit. Is it to develop standards for the collection of the three classics: education; income and either occupation and employment or is it to go beyond that and to think conceptually about other kinds of data that we want to include on national surveys. So I don’t know exactly what the scope of this hearing is intended to be.
DR. QUEEN: I don’t know if you will be able to understand me. I think it would be starting with what we are currently collecting across these surveys, taking a close look at those, the items or variables. To what extent are they currently being collected in an identical or standardized way and to what extent that meets a definition of SES? Then in addition, looking at the potential for adding variables if possible or for certain surveys. As Vickie mentioned, there are some that may already be collecting additional information. It could be classified as SEP so it would be looking at the gamut of what we are currently doing, how to standardize what we are currently doing and the potential for adding.
DR. MAYS: Can I ask one more question? Susan, isn’t it on the table also to figure out if there are linkages because this is the particular one where linkages come in.
DR. QUEEN: Yes.
DR. MAYS: I think in particular so I thought that might be a discussion where you don’t have to collect it but that if it is linked to one of the other either HHS or even a non-HHS like being able to get data from ACS or places like that.
DR. QUEEN: Yes, yes.
DR. HORNBROOK: We also talked about cross plead indicators and if you are eligible can tell us a whole lot about the need to have income or education or if you are on medication. The system source develop records would be tremendous.
MS. GREENBERG: I think what we are talking about is I was just looking up the summary here of that teleconference we had and Bruce, I noted that you had said that NCVHS could take a two-pronged approach. In the short run it could gather and assess information through a hearing to meet the department’s immediate needs for a standard. This is I think a minimum they are talking about, not what would be what everybody would want to know but a standard that can be recommended for all surveys. However, at the same time, it could begin to explore the longer terms issues of cutting edge research and other variables and indices that aren’t in common use across data collections but have promise in improving understanding of the relationship between SES and health.
PARTICIPANT: Whoever said that did a really good job.
DR. HORNBROOK: There is the other thing economic opportunity and ability so are they moving up or are they moving down or even further. What is the dynamics concept on this as opposed to a pressure?
DR. GREEN: I am still having trouble making sure I am hearing everybody. I want to try a summation of what the scope of the hearing and everything. If I heard it right, it goes something like you start in this hearing with what NCHS is doing now to collect NCS data but that is considered to be a floor, sort of a floor of where we are. Vickie started it out with that paper and saying we have got to get everybody to same sort of common understanding, but where you want to go is what is the potential for improvement. That leads to how to standardize, how to link and how to do it efficiently.
DR. QUEEN: I would only add that it is not NHS but it would also include like the drug survey, SAMHSA’s drug survey and perhaps even the Medicare beneficiary survey that CMS does. So it would be HHS surveys.
PARTICIPANT: I hope you understood her, Vicki.
DR. MAYS: In essence what she said is that, you use the word NCHS and what she is saying is it is broader than that and she was saying things like NSDO and all of these other things. The thing I would say is I don’t know that the hearing is to talk about the status. I think that is work we can try and do beforehand. I would even wonder if Susan doesn’t have some of that.
DR. QUEEN: I do, I do.
DR. MAYS: NIH has a big meeting on SES. There have been a lot of meetings about this so I think to some extent it may be that part of what we need to do and Susan knows where some is. I know where some of this is, is to just pull together like you know I just did this as a little primer but there are other things that we can actually pull together and say here is the status of this information. And in the hearing since we are only going to be able to do one day, is that we really say okay.
MS. GREENBERG: We made one day or is it a day and a half?
DR. MAYS: The poll made it seem like it was only one day.
MS. GREENBERG: I think we are talking about a day and a half.
DR. MAYS: Oh okay, sorry, then I think what we could do is to spend more time on defining what are the elements of SES and SEP and then kind of where the data sources are for that and then I think just like Mark is saying, there are these proxies that are absolutely wonderful for us so it is not every time that you have to ask the person if they were making this amount of money but suddenly if you know they qualified for a program, done deal. That is a poverty rank. So I think it is that and then I think the next step would be because as I understand it, what Jim needs has to be wrapped up quite quickly. So I think at the end of that we do part two of next steps but that that is not in this hearing.
DR. QUEEN: Vickie one thing that I want to mention is when they were developing the standards to address the Section 4302 of the Affordable Care Act, those standards almost verbatim matched the words and the response categories for the questions that were asked on the American Community Survey. So we need to sort of consider how income if that is on that survey would be an example. Many of the data on this we would be interested in wouldn’t necessarily even be on the ACS but is just something we need to consider.
MS. GREENBERG: I hope that Vickie is understanding her. I just can’t understand what she said but I guess my practical and immediate concern is if we are going to have a hearing the end of January and if we want to have any panels or invite people to either talk about what the measures that they use in their surveys. If you want people from HIS. If you want people from wherever, we need to start lining those up sooner. We can’t wait until after New Years to do that. We have Thanksgiving coming up and then of course we have people taking off for the holidays and all of that. In the federal government, I would imagine you would want people from NCHS, from Census, and Susan you have worked with Jim on these activities so you know better whom you would want to invite but people start taking use or lose, et cetera.
DR. QUEEN: We need to settle on the date and get started.
MS. GREENBERG: We need a plan and then are there people in academia do you want to invite.
DR. MAYS: I have a list I kind of started.
MS. GREENBERG: Would you suggest that maybe Susan and Vickie work together.
MS. MILAM: I think so but I think before we even get into this hearing I think we need to address the scheduling issue because Vicki is the central and when you look at the doodle polls, Vickie can’t attend the dates that it is being scheduled for.
DR. MAYS: I am already booked. I teach on Monday and Tuesday. I was just telling her, I can go back to the doodle poll on Thursday it is a definite that I can now come but there is another conference that starts, a big psychology conference that starts that weekend so I have to be back on Friday.
DR. GREEN: Vickie has got to be here.
DR. MAYS: So I am just saying if you take the week before, if you did the week after but that is a big meeting week already.
MS. GREENBERG: I do think Vickie is rather essential here.
DR. QUEEN: Yes.
MS. GREENBERG: So did we identify dates when you were available or are you not available at all in January?
DR. MAYS: If it is a day and a half, if it was just you gave only four days in the same week. If it is the week before or the week after, I am much better. It is just that I couldn’t.
MS. GREENBERG: Were there other people like the co-chairs who weren’t available the week before or the week after?
DR. JACKSON: We can send out another poll but it was the co-chairs we were using as our anchor and then going from there and trying to capture as Larry says the sweet spot at the end of January when we might have a little more time rather than by the time you get into the 14th through something then the co-chairs were not available. Then we get into March then you get into the Quality time period so we were kind of.
DR. GREEN: Let’s figure out a hierarchy here real quickly.
DR. MAYS: I can send you we need at least one co-chair
DR. GREEN: Co-chair, we do. So the hierarchy would be a co-chair. The hierarchy is Vickie, a co-chair and Bruce and Susan.
DR. QUEEN: I am available.
MS. GREENBERG: I agree with that hierarchy. We need one of the two co-chairs minimum. We need Bruce and Vickie and Susan and then of course anyone else, Susan Queen, anyone else on the Subcommittee who is available, we would welcome. But we don’t even need for that matter a quorum of the Subcommittee because a Subcommittee can have teleconferences afterwards and even if they make a recommendation to the full Committee, it has to go through the full Committee. So we don’t have the quorum issues that we do when it is the full Committee. I prefer to, I don’t like to have a Subcommittee hearing when there is like one or two Subcommittee members sitting there but nonetheless, we have a little more flexibility because this is exploration. This isn’t and then anything you usually don’t make your recommendations even then at the meeting. It is afterwards on calls and things.
DR. JACKSON: At the end of the week, Friday I can check in with Nicole. We can send out another poll based on this hierarchy of who you have to have and recognizing we may have a limited number but you are right. We do need to get started on setting up the infrastructure for this because we need to start to need questions. You already are questioning here the scope of the workshop. What are you trying to accomplish and that will determine who you bring in and the kind of questions that you need to ask them to get what you want. Otherwise you are just not using a good use of time.
MS. MILAM: So maybe Vickie and Susan, do we want to discuss today how the panels would work or would you want to work off line and figure out that structure with Debbie. What would work best? We have got all of us today but we could defer to you as well.
DR. MAYS: How about Susan and I talk. She knows I think exactly what they need the most and I think they have some people on their agenda that they may want to hear from, that they have to hear from such as some of the survey people. So I think the surveys have to be given precedent so given that we are only going to have x amount of time, I would want her to say which people from the surveys need to come in and then after that to determine others that we might want to hear from because I think it has to focus at this point on surveys.
MS. MILAM: That certainly make sense.
DR. MAYS: I will work with you and Susan and make sure the communication stays open.
MS. MILAM: Maybe from the Subcommittee you could take the lead or really chair the hearing, Vickie.
DR. MAYS: Yes, as long as I am going to be there, the date is fine, yes and I will work with Susan on the questions and Bruce because usually what happens in advance is when we do the hearing, we have a set of questions that we are asking people to respond to.
DR. BERNSTEIN: I would just encourage you to this internal thing here but encourage you to nail down the people that you want as soon as you can. You are already in the middle of November. People are going to be away for the holidays. I agree.
DR. GREEN: I think the Subcommittee as a whole should be asked to identify the people and the sources that we need to hear from then it seems to me that we channel that toward somebody, Vickie and Susan.
DR. MAYS: That is fine. I just think you are going to find that when you have only a day and a half that you are going to end up, if you know how many surveys there are, you are going to end up that is predominately people coming from the survey because it is not just the NCHS ones. There are some other ones.
DR. GREEN: Sure, NIH.
DR. MAYS: I am going to guess and I wrote some things down, there are probably like eight or nine surveys that we have to consider.
MS. GREENBERG: Possibly like two federal panels and two more panels.
DR. COHEN: It is easier to compile that information and know what is there beforehand. I am more interested in getting outsiders to comment, some academics and a variety of even providers about what it is realistic from their perspectives and is creative about what we can collect. So I guess we have to talk about what the vision we are trying.
DR. MAYS: I think it supposedly be only see that is what I am saying. I think you are on part two. My understanding is as for ACA that it really is about the federal surveys. That is why in terms of some of the other stuff.
DR. COHEN: So this is just pretty much rounding up the usual suspects?
DR. QUEEN: I think what we do as Vickie you pointed out earlier that what we already know we do, we can have an advance. We don’t have to have every survey necessarily present each item that they already collect. We can minimize the time by making sure that we have all of the surveys.
MS. GREENBERG: They could have to come and say we collect this, we collect that. We can have that but I think that there would be some questions about which data you find most reliable or do you take proxies. I don’t know. Things like that.
DR. MAYS: That is actually like data users.
MS. GREENBERG: And then have one or two panels of more like what you described as well. I think if you have a day and a half you can have three panels the first day, one the second or something like that.
MS. LUCAS: Vickie and Susan, this is Jackie. I am available to help.
DR. QUEEN: That is great. That is excellent. That is because NHIS is there of course, can be a major component.
DR. HORNBROOK: I think there is some whole set of issues swirling around here. One is literally how do you frame the questions on federal surveys and for that you probably would like to see some psychometric data response rates, reliability both of the instruments and the items themselves if anybody has done any of that kind of work in the sense of being responsible for vetting the items on national surveys. The second thing is sort of what is the concept we really want? What are we trying to measure when you ask these questions? And the third one is validity. Are people telling you what you think they are going to tell you or are they telling you something entirely different? I do research and I ask the income question a lot. It is one of the highest frequency refused items. People do not want to tell you their income.
DR. QUEEN: That is another issue also the imputation methods that we use.
DR. HORNBROOK: So that gets you into imputational methods.
DR. QUEEN: Oh, I know they are fun.
DR. HORNBROOK: One of the things we have also found is that even though it is proxy measure, people relate to their neighborhoods. So if you use the neighborhood characteristic which is saying the census track on the census block your population will structure out, will stratify out using your census characteristics of anywhere from three to seven variables using a factor analysis that predicts their health care utilization behaviors and their health status and their willingness or ability to adhere to drug regiments. So there is a whole context here what it is we want to as this Committee to apply these social stratification and social positioning and of course economic opportunity and changes. Right now we have seen a lot of people drop in their social status, at least their ability to purchase things.
MS. GREENBERG: Will you work on the Vickie also on the questions?
DR. HORNBROOK: Sure.
MS. GREENBERG: We didn’t mean to say you weren’t a priority. You are a priority. It is just we are trying to this is one we are kind of committed to doing and so we are trying to figure out how to move it along but I would really hope you could participate.
DR. HORNBROOK: Economics has a different theoretical structure to some of these questions than social science and or epidemiology so different fields have different ways of interpreting and in theory you are theoretically defining these variables. Of course then the social cultural, the anthropology folks have yet a different way of defining this.
MS. MILAM: Vickie what point do you think it would make sense to have a call of the Subcommittee to keep everybody in the loop and get feedback if you need it?
DR. MAYS: That is exactly what I was going to suggest when Marjorie said that is that I think we should as soon as the questions of what the hearing are developed. We should send them out by email. We should give people the opportunity to comment and we should have a call so that we can hear kind of the nuances of what people want because it isn’t, I agree with what Susan is saying, it isn’t that. Okay here is what I collect. Here are how many people do it but it is like it is the devil is in the details.
MS. GREENBERG: I think the hierarchy we were talking about sequencing and pacing earlier today but the hierarchy would be whom do we need to hear from so we can get on their calendar. The hierarchy is select a date, one. Two, whom do we need to hear from so we can get on their calendars and we can tell them this is generally what we will be doing but we will get back to you with some specific questions and then three is the questions and you know. Are we thinking that we can meet at NCHS?
MS. MILAM: When you want feedback on the panels themselves or do you think that can be done by email. What is your sense of that?
DR. MAYS: I would suggest that the panels we can get feedback by email. I would suggest the questions that we have a discussion and how quickly we do that I think is I think that depends on talking with Susan to see kind of what she. She has been working on this already so I think she has some things in mind. Then we can draw and see what has already been answered so that we don’t have to really do that.
DR. QUEEN: I will also check with Jim to see if there is any process that he wants us to follow given that this is ACA related or following on ACA. So I will just check that with him.
MS. MILAM: Is there any more discussion on the SES hearing?
DR. JACKSON: It will be a very busy period here next week and the next couple of weeks establishing groundwork and delineating the timing and getting questions and we will make sure everyone is informed.
DR. MAYS: Should we just go ahead then and set up a call? The holiday is coming up. I don’t want to start saying Susan can be finished by then because the holiday is coming up but maybe we should set a call for the week after Thanksgiving. So why don’t we just say that and as they say we will just make it so.
DR. JACKSON: Then we will be polled for a good date for Vickie, clear and make sure who we need.
DR. GREEN: Back to Mia’s point. Don’t we have to know who we want to present like yesterday? It seems to me there should be a hard deadline where we identify who we need to contact to present.
DR. BERNSTEIN: You need to know the kind of people that you want so we can identify them or whoever is going to be doing that writing to get to those people. You are not going to hear back from them during the holidays and you want to nail that down and if you do it in January it is not enough time for them to make plans.
DR. MAYS: It is also a back and forth because you will have slots of who you want to hear from and so this person you don’t know that slot has to be filled versus just that person. Again, I think that I have a sense that among us we actually will know some of these people and can pick up after they get Senate official letter we can actually pick up the phone.
PARTICIPANT: Identify your sort of top choices and if they can’t make it.
DR. MAYS: Exactly. I was already thinking in my head that there are certain people that if they don’t get phone call they are just so busy they will just think this is another thing but if you call them and say why we need them, they will come. They will try and rearrange their schedule.
MS. MILAM: Sounds good. Anything else for the hearing? We have got a plan. We have some timeframes. We have a chair. Anything else? Well, Larry, I think we are done five minutes early. Do we need a break before we go to Privacy? We will take a five minute break and then turn it over to Leslie.
(Whereupon, the subcommittee adjourned.)