[This Transcript is Unedited]
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Agenda Item: Call to order, Review Agenda
MS. MILAM: Good afternoon, and welcome to the Population Health Subcommittee. We will need to go around and reintroduce ourselves and indicate if we have any conflicts, or if you're staff, and who we're with
MS. MILAM: Great, I'm excited to see everybody here. As you can see, we have a very ambitious agenda. Larry and I had a discussion earlier. We propose to try and break this up in the same order but with slightly different groupings. We will work from 4:00 -4:30 on the SES hearing coming up, and at that point, I will turn the meeting over to Larry. For right now, Vickie and I had a conversation about the sorts of information that would be helpful to further shape the outcome of the hearing as well as the hearing. Vickie, you had wanted to start with the proposed report, what that might look like, and its outline.
Agenda Item: Plans for Socioeconomic Status Standards Workshop, March 8-9, 2012
DR. MAYS: Right, I think that what will help going into the hearing is a sense of exactly how we are going to do the report and structure it. So, in the presentation that I did, part of what I laid out as an important start for us is really to say first what SES is, to be clear about the fact that socioeconomic status is not a variable that is corrected, but that instead it really means focusing on those three things.
After doing the background and presenting that as the issue, the next things we want to talk about would be what is the standard way that these things are collected viewed from talking about standard practices to who those standard practices seem to work for, a little bit about what the various surveys do, so that after you understand what SES is about, the next thing would be then to understand what is it that used for by the federal surveys.
Whether or not in thatI think that really sets the ground work after that to talk about the recommendations that we would have. You would understand why, in terms of talking about minimums, the ways in which we might, to some extent, want to recommend that they be changed or not changed.
That is kind of the structure that we thought that we would do for this minimum standard. I should say and then close it out with, those things that we thought were innovative new directions, things that we have raised, but as far as dealing with the minimum standard that we are pretty much going to be talking about up or down in terms of each of those three variables.
There has been discussion, and that's actually what I would like to use this time for, to see if you want to frame it differently. It has come up consistently by Mark and Bruce, who are both here, as people who have wanted us to do some framing. Maybe we could hear from you. You heard Jim today, and that's the client, so I would also like to hear what others have to say about the structure of the report.
DR. COHEN: I'm happy to start. I started with responding to Jim. He raised, I think, very relevant and pertinent concerns. People are going to think aid income groups, less than high school, high school, college, more than college, case closed, we're done. That's a concern I do have. Again, it is like the minimum standards for race and ethnicity, people are going to end up adhering to minimum standards if we don't provide direction that we think is more relevant to meet more diverse needs, even though clearly, our mandate is the minimum standards for federal surveys. I think
DR. MAYS: Can you tell me in the report how you would like to handle that.
DR. COHEN: In the report, I would like to see three things. A recommended complete standard that rolls up into a minimum standard for what we currently have available that is chapter one. Chapter two is the other measures that we need to begin exploring, where people that aren't ubiquitously used, but people have used, to measure some of these concepts more broadly, and that gets to the neighborhood and community-level measures. That gets to other concepts such as social position and like the focus on the disconnect between personal and neighborhood poverty. The third section would be more speculative, on higher vision concepts about what we are trying to do where there hasn't been much work done that we should start developing an even broader agenda for. That is what I would like to see.
DR. MAYS: Mark, did you have anything?
DR. HORNBROOK: One of the things I was thinking of was whether we want to say anything about dynamic, in the sense of yes, you can ask people where they are at a certain point in time, but that doesn't say where they are going to end up. Most of us realize that you are on some sort of trajectory.
And for some groups their trajectory stays flat. They don't have any opportunity to get off of that trajectory. Any time you ask them, they are still at the bottom whereas other people have moved up because their careers progressed or they had more education or they have great entrepreneurship.
There is that concept of whether people have opportunity to shift, and then there is the concept of whether distribution of wealth in the economy is totally concentrated in the top one percent or is spread out more. If income distribution is so unequal, the only people who can really move are the top one percent. Then we have a recipe for social disharmony and, of course, for bad health. You put that, today, in the advanced, somewhere in the future category. I perceive, of course, that in today's political world, they really don't want to address the issue of inequity of opportunity because it seems to spark divisive responses. I could be wrong, of course, but it seems to be a clinical dialogue.
DR. BREEN: Can I pursue this with you a little bit? I was curious when you talked about economic opportunity, which was the way you put it, in the meeting today.
DR. HORNBROOK: WHO opportunity definition is sort of that last phrase.
DR. BREEN: Now you are talking about dynamics. So I'm wondering if you have a sense of how to measure it. I don't know if anybody is against looking at it that way, but I'm not sure if we have standard measures that we can call upon to do that. Vickie tasked me to look at occupation, and I was surprised as an economist, to find out that most of the work in occupation is actually being done by sociologists. They are looking at it. There are a few that are looking at it dynamically. Most of them are looking at it in sort of a structural, functionalist way, where we have cells, and how do we put people into cells, where would you locate them based on their income, their education, their occupation? Are there status measures or ways of hierarchizing or ranking people in these things? None of that is very dynamic.
DR. HORNBROOK: That's because they are frozen in the castes.
DR. BREEN: That's why I'm wondering
DR. HORNBROOK: -- repeated measuring.
DR. BREEN: I didn't hear a repeated measurement, but we do that. We are always measuring, so it's really an analysis thing. Oh, you want longitudinal data. That has been an economic problem. We could ask about it. We do have this panel survey of income dynamics, but I don't think we have
DR. COHEN: Is MEPS a panel?
DR. BREEN: When I think of what we really want for this, I think you want a birth-to-death. I think the best one we have is the health and retirement survey, which I believe starts at age 50, and watches people as they mature in their careers or whatever, and then retire.
DR. HORNBROOK: In some sense, they have already inherited over the first 50 years the trajectory that they're going to actually follow. They are predetermined already.
DR. MAYS: Let me make a quick comment and then call on Larry. One of the possibilities is to actually talk to NIH about the child study, and to figure out whether they are putting adequate measures into the child study so that you can actually get what you want.
DR. GREEN: Let's go past the hearing to the report, and I would like to direct this comment, particularly in light of a couple of things I heard in the presentation from the rest of the committee. We have a half dozen plus well-established infrastructural surveys that are doing something about three categories three categories.
DR. HORNBROOK: You would like them to be standardized and comparable? Harmonized?
DR. GREEN: Actually, I'm wondering if in the report it would be possible to report response rates for the way we are doing it now. Over the years here, I believe letters that have a couple or three numbers in them as part of the work, have more traction and have more bite. For example, if respondents are reluctant to check any box on income, let's show that. I believe that is key, contextual stuff for us to decide if we want to make recommendations about other things to do.
DR. MAYS: Let me make sure I understand, what you are saying is that you want to get a sense on surveys to what extent do they self-report income, occupation, and education?
DR. GREEN: We have the three categories. We have our list of surveys. We know which items in the surveys are aimed for that category. Let's look at the response rates for the items that build up to that. If we see that it is eight percent for one key part of it, that makes Mark happy. Mark has a new agenda item and we have learned something that is very important.
DR. COHEN: The corollary to that is how do we reduce the non-response rate to the income question. There are people who have worked on that issue, around how to set up an income question that maximizes response in a variety of ways. I don't know whether that
MS. QUEEN: For the background I have been putting together for each of the surveys, we are providing at least overall response rate and then I have got non-response for income for a lot of them. Some of the other variables, especially the ones that are outside HHS, I am not sure who to contact or how towe have 19 surveys right now that we are including in this descriptive list.
DR. HORBROOK: It is the concept that 85 percent response rate for the main body of the survey and then you get to demographics and income and it goes down to 40 or 20 percent.
MS. QUEEN: And some of the longitudinal ones where you're having
DR. BREEN: No, it's usually 15 percent that don't respond, non-respondents. Usually, what happens now is those data are imputed. I don't know how you feel about imputation, but there are various ways to do that. We're not missing the data. It is imputed.
DR. GREEN: Let's see if we can make that distinction.
MS. QUEEN: Because you have the CPS survey as the income are collected in February/March of the year following the data collection for the main term population survey. You already have a low response rate for the ones that they are following up on to get the detailed income questions. There are 51 questions. Then you have about 10-12 percent non-respondent for those income questions. The census has a really detailed system of method imputation.
DR. MAYS: I think what would actually help me, Larry, because I want to understand what it is that we want to learn because I don't want the surveys to feel that we have attacked them, to some extent. All of them do imputation so even though we have missing, many of them have spent a considerable amount of time on figuring out how it is that we make sure that we can account for this. If somebody then picked this up and we said that there is only 15 percent response, but there is a method for getting the rest of the people, and if we don't say that--. I'm trying to get at what the point is that you want and to see what the best way is for me to make it.
DR. GREEN: To answer your question, how do these current items on our target surveys for these three categories perform?
DR. HORNBROOK: Imputation in general, I think it just reduces variance.
DR. MAYS: Yes, it does, and it is interesting because what happens then is that usually a typical group of people, either the elderly or somebody reporting for children, and it then impacts a group.
MS. QUEEN: We have someone in ASPE right now who is looking at item imputation versus whole imputation with the CPS.
DR. MAYS: Now, I understand exactly what you want, so we can make the point, but put it in the best light possible so that --
DR. GREEN: Not necessarily, let's see what the results are. We can figure things out. We do this all the time. We don't want-- the purpose of this is to be constructive. We will interpret it and figure out how to make it out, we can do that. It may look really good.
MS. GREENBERG: I'm sorry I was so late. I was up with Standards. Mother has arrived. We have about an hour and fifteen minutes, so what we need to be-- we must get an agreement on the agenda today because this hearing is in one week and we have nothing posted on the website except to say that it is going to take place. This is a problem.
Even if people haven't confirmed, we just leave blank. We don't put anyone-- I don't want to post anything on the public website that has names on it of people who haven't confirmed. People get very unhappy when they see that.
DR. MAYS: Everyone has confirmed, so if that is what you want us to do-- because I am mindful of the two things I said I had wanted to get accomplished.
MS. GREENBERG: Obviously, also, if you have additional questions beyond what the people have been given, obviously they need to get those by tomorrow morning at the latest. It may not be perfect. We may have to go back and get some additional information in April, whatever. Those are the two requirements that I have as the executive secretary.
DR. COHEN: I have a question on the agenda. Nancy, you have been looking at occupation. I guess, and I started this conversation with Vickie and Susan earlier, my latest review, it seems like I've gotten that occupation now is more off than it is for environmental exposures than status measurements. How valuable will it be to incorporate as the third pillar for collection in socioeconomic status? I certainly disagree with Jim, who said that nobody knows how to code it. I think NIOSH has made huge strides in automatic coding for occupation. I don't know how it is being used for status, which is the key issue here.
DR. HORNBROOK: Do they use occupation status for that or do they also use occupation and industry?
DR. MAYS: Can I fill you in on that because I just had a conversation walking into this room with Sherry Baron. She is going to be talking about those things. Her part won't be a long part about the prestige indicator, but she is going to talk about how they actually handle it. She and I were just talking, there is a person whom she just sent me the information about that she thinks would be-- she's trying to find a person who would be a good partner for her in terms of talking about that. She just sent me the information, and it is probably in my email now, so that is the other piece we are trying to get in.
DR. COHEN: That is the piece that I think is, looking at the agenda, is in some ways the weakest. Thinking about occupation as a measure of status.
MS. GREENBERG: Yes, we have been worried about that.
DR. HORNBROOK: So, in thinking about that and taking it one more step, if you are in a high-risk occupation and you have a very high income and the market is essentially compensating you for taking that risk, you have made a deliberate, personal economic decision that that risk-benefit trade off is in your favor. But if the person in that high risk occupation has low income, then you have a diversity problem and exploitation. That is the kind of information-- even if they are going to resist using occupation for environmental stuff, in the case of socioeconomic status, it is relevant if indeed it is a kind of exposure to environments across the legions for which they are not being compensated adequately. It then becomes occupation, industry, income.
DR. BREEN: My take on this-- we called Bob Hauser who is sort of the occupation guru in the country right now. He has a long legacy.
MS. GREENBERG: Where is he?
DR. BREEN: He is from the University of Wisconsin. He is also with the National Academy of Sciences right now. We had some pretty long conversations. He would use some measures of income and education in order to put people into the occupation boxes. It also seems like income and education are clearer measures to be associated with health and insurance for health services.
Occupation is something that we really haven't-- well, there are two things. We really haven't used it a lot in the United States to look at health outcomes, compared to say England or some other countries where they routinely use occupation to look at health. The other thing that I would say is that if we are really interested in pursuing this, we might want to have another workshop just to look at occupation and health.
There are a number of theory-driven ways to organize the data. It's not about data collection. It is about how to organize the occupation and industry data in order to look at health outcomes. There are three or four major theories and permutations of those theories. I think it is utilization of the data and not collection of the data. I think the way the census collects the data is pretty standard and well-respected, and that is used. There is the Dictionary of Occupational Titles. There is the ONET. There is some debate there. I think it is utilization rather than data collection, how you organize those data. That is another topic and is really too big for what we're doing and it doesn't fit very well into our timetable. I think for us to focus on what Sherry Baron is going to do, occupational exposures makes a lot of sense.
DR. MAYS: And we have made sure that as we're doing this we stayed focused, so we actually went through considering people like Eric Goldman-White(?), others, that would have been able to answer what you are asking, but it is really about collection issues--
DR. BREEN: No, analysis issues-- oh, you mean this is?
DR. MAYS: Yes, it is not about the organization. Occupation is a little different, I think, than the education and income. The funny thing is that what we have is a ton of people piled in income, but the federal government says that we need to do that. Education is a little less than occupation. It is standing off on its own with a different set of issues.
DR. COHEN: I agree. I like Nancy's solution. Nobody is going to have to prove that education and income are related to socioeconomic status. The jury is still out about how to use occupation. Maybe the recommendation is that we need to investigate further using occupation as a measure of relative social position or SES.
MS. MILAM: I'm going to say more about 25 after, and I'm thinking about what we need for this agenda to be ready to be posted. One thing is that I think somebody needs to go through and work on some formatting issues.
MS. GREENBERG: Yes, we will do that once we have the content.
DR. MAYS: Content is done.
DR. BREEN: Well, there is one issue of content that we might want to solicit from this group, education.
DR. MAYS: We have a couple ofif we want to do that, it's a matter of having two or three other people who are still under consideration. Is that what we need to do, Marjorie, to bring up all the considerations at this point? I thought we were trying to make sure we understood the types of what they
MS. MILAM: Do we have a placeholder on the agenda, and we can just leave it blank or to be determined? That's what we need for this agenda.
DR. MAYS: For it to go up on the web?
MS. GREENBERG: In order to put it on the web, if you know you are going to have a speaker on a topic, all you have to do is put the topic and to be determined or something. We don't even need the names. You have to understand that there is nothing right now on the website and the meeting is in a week.
DR. MAYS: We all want to get it out the door.
MS. GREENBERG: On the other hand, we also don't have a lot of if they are to be determined, so there is not a lot of time to determine because the meeting is in a week.
DR. MAYS: We have a little bit of time, so let us go through there and tell you where the TBDs are for right now.
MS. GREENBERG: Our staff will put it together as a nice agenda.
DR. MAYS: Susan, you are determining somebody that is coming from ASPE for the 9:30-10:15, and you just put that in there. The other thing that we have is another person for the education panel. The income panel, we don't want any additional people on that one. We are pretty good. We haveI just talked to Sherry, we thought we were going to have ONET, so we are back now to another person that she has suggested. So, there should be a TBD in occupation. There may be two TBDs in the education
MS. GREENBERG: If we have at least one name, we can even put that one name and then you can get the other people.
DR. MAYS: There is no panel that is missing. I'm confused.
MS. GREENBERG: What I'm saying is, for each panel you have one person who is confirmed, then fine. Let's say you think you might get another one or maybe two more, you certainly don't have to put TBD, TBD. You don't even have to put TBD at all if you have at least one person there. If you are more comfortable indicating that there will be other speakers, put one TBD. Just tell us what you want to do, a maximum of one per panel.
DR. MAYS: Then we are fine. We also have a TBD in the linkages, wherever the linkage panel is.
DR. BREEN: Susan found Fritz Scheuren.
DR. MAYS: I think we have one more. It's Fritz Scheuren and Jennifer.
MS. GREENBERG: I think we don't have Friday.
DR. COHEN: My question on looking over this, would it make more sense to talk about measuring SES and methodology on the first day before we get into the substance.
MS. GREENBERG: Well, we had some people who couldn't come.
DR. MAYS: We had to deal with people's schedules, which is why it is organized the way that it is.
DR. COHEN: Is there any flexibility in Friday? Linkages, to me, is lessmeasuring SES is a fundamental issue that should go first if it were possible, just flipping the 9:15 versus the 11:00, but that's just the way I look at it.
DR. MAYS: As I understand it, and Susan can speak up, is that we're in the slots we are because some people can only make one day and not the other.
DR. BREEN: He's talking about switching Friday 9:15 to 11:00.
DR. MAYS: Oh, when they are in the same day, I think Jackie can tell you. It might be possible if it is the same day. I'm sorry, I thought you were talking about what we're going to do at the beginning of the
DR. COHEN: I was initially, but then my pre-positioned
MS. GREENBERG: I will also say that we can post it the way it is, and then if we think it is desirable to flip those two, Jackie and Susan can see if she can arrange it with people. We have to post it.
DR. COHEN: That's fine.
MS. MILAM: What other feedback do we need on the agenda so that we can return to the questions?
MS. GREENBERG: Did you say Fitz is confirmed?
DR. MAYS: Everybody on here is confirmed.
MS. GREENBERG: Everybody who is on here right now is confirmed. All we really need is to have it printed out, right?
MS. MILAM: Larry raised a good question. How many members of the subcommittee are planning on attending?
MS. GREENBERG: We are talking about the members of the subcommittee, not staff. The members are just the national committee members. How many members of the national committee are planning to attend? We have Vickie. We have Larry, yes?
DR. GREEN: I am.
DR. KAPLAN: I'm coming.
MS. GREENBERG: Bob is coming.
MS. GREENBERG: We don't really have a quorum, but we don't need a quorum because it is a subcommittee.
MS. FRANCIS: I will be on the phone.
MS. GREENBERG: You're going to be on the phone? Okay, Mark you're not going to
DR. HORNBROOK: I'll be on the phone for part of it.
MS. GREENBERG: Okay, Mark will be on the phone for part of it. Bruce is on the beach.
MS. MILAM: I have a conference that completely overlaps.
MS. GREENBERG: That is enough. Bob is also going to be there. Leslie, you are planning to be there. Nancy is planning to be there and Susan and Jackie. I will be there the second day. I have to travel the first day. Debbie, you are going to be there. Nicole will be there. I think we
DR. COHEN: Phone.
DR. GREEN: I have a request of you guys that will be on the phone. Don't be shy. When you get on the phone, interrupt and say, Mark Hornbrook, I'm on the line. Let us know that you're there. I'll go to a lot of trouble to call you out and say that I can't see your hands
MS. GREENBERG: I would rather have more members there in person, but as my favorite grand-daughter says, we get what we get and we don't get upset. This is fine. I thank all of you for planning to be either on the phone or in person or for contributing to the planning of it. I think we will be fine, thank you. This is good. The agenda, you have blessed with cosmetic changes, right?
MS. MILAM: You wanted to turn briefly to the questions and get some feedback on those reactions.
DR. MAYS: I guess for right now, I think I am hearing what people need, so in terms of the specific questions, people can comment to us, because we also need to get this out the door.
DR. BREEN: I keep hearing of Bruce's table. What is Bruce's table?
MS. MILAM: It is far too valuable, there is only one copy in the world and it is right there.
DR. COHEN: If you do include it in the presentation, I would format it differently. It's just the notion that there are short-term indicators and long-term indicators and there are different levels of indicators and we need to be--
DR. MAYS: Right, but what we thought is that having people who are coming to the hearing to realize that. Some of them have said that they can't present like that, but for us to have them be able to comment on it. People have said that they don't have data and it's not what we do, but we are pretty concerned at this phase to say that we would like you, if questions come up, to think about it. Even if you're not there, I'm trying to make your thoughts
DR. COHEN: Thank you, I'm there in spirit.
DR. GREEN: I'll weigh in on the questions. I liked them before, and I still like them after what I've heard today. I think the questions are pretty good.
DR. MAYS: All right, because I know you want to get on to your other part of the agenda, anything else?
DR. COHEN: I think addressing these questions will help organize the report, too.
DR. MAYS: Thank you everybody. Thank you for the time. I think we will move on.
MS. GREENBERG: This is a complicated area, and I think we have done a very credible job and, of course, hearing it will be helpful to the department. It is not the end of the story. I really thank all of you since it has been difficult because it is so complicated. I think it will be good.
Agenda Item: NCVHS Communication Strategy for Population Health, and Future Directions
DR. GREEN: I so regret that Linda Kloss is not here. I'll lean on you, Marjorie, to fill in a little bit for the sorts of emails and discussions about disseminating NCVH's work that she stimulated. We agreed at our last full committee meeting that we would put this on our next subcommittee meeting, to have a discussion about this. I'm pretty ignorant of any integral developments, so if you can update anything that happened in the interval. `
Where we are headed here is to have a rapid-fire discussion about what the committee and staff is thinking about what needs to happen so that explicitly wonderful work every now and then actually gets disseminated properly. I think we agreed at the last committee meeting that this could use a little brushing up. Is that fair?
MS. JACKSON: Just to add a little background, this really caught fire when several of the subcommittee member co-chairs, were at the NAHTO meeting and presented some slides and gave background for the committee. The light went off in people's brains, and their eyes were like, oh, what is this group doing, they are really great. They have been doing for how long?
MS. GREENBERG: This is one of our partner organizations.
MS. JACKSON: It really went home that there are pockets of populations of groups, that need to hear our work.
I am very proud to say that community health, the CHIP report, that you worked so hard on in conjunction with Privacy, we worked out a printing plan so that it is not necessarily typeset. It is really copied. Thanks to Susan Kanaan in getting it all set up in a very nice format, we were able to get it copied on nice paper and stock. We can move rather than wait two months to get it copied. We have avenues like that. This is up on the web, the whole thing for the dissemination plan that is in your agenda book that the people looked at.
They looked to see your groups and organizations I think they would have an interest in, and find a way and let us know either to get us mailing labels if people want paper copies or if you want to, more frequently, use a distribution list and email list-serve to push things out, we just need to know and be a repository so it is possible and really categorize, cataloguing who is getting what and the numbers of recipients.
It really makes a difference as we are justifying and showing accountability and accomplishment that we have this kind of an audience that is out there. That is what we wanted to focus on. This was going to be a test case since two subcommittees worked on this. It is so pervasive as far as topics and it has reached so many places.
DR. GREEN: So, what do we need to do?
MS. GREENBERG: The idea was to actually complete the template. The executive subcommittee blessed the template and the plan that Linda Kloss worked on with several people and staff. Then we agreed that the pilot of the template-- and it's not just a paper exercise. In doing so, you will guide the dissemination of this report and the HIPAA, the standards group, is supposed to do the same thing for the HIPAA report. We have obviously posted it. It is on the website.
I give Debbie, as well as Susan, tremendous credit for the fact that we have, I think, a very nice looking document without it breaking the bank. She went back -- all of this is resource intensive, but it is very important. Debbie went back and forth quite awhile in order to get something that we thought was attractive and compelling. Does somebody have the template? It is in your agenda books.
MS. JACKSON: It is under minutes. The minutes are on page four, about three pages from the back of tab four shows project, communication type, description obvious, delivery method, start date. We can fill in a lot of this. The communication strategy description is right before that.
MS. GREENBERG: I think what would be most productive during this discussion-- first of all, I don't even know if-- it says once it is sent to the Secretary, post it on the website. The list-serve is notified and provided the web link. Have we done that? Have we sent in the two reports to the Home National Committee list-serve? I think we did, didn't we? I think Nicole did that. She had recommended issuing a press announcement. It is very difficult to issue a press announcement unless you are the Secretary.
At this point, also, I'm not sure if this is of a nature to issue a press announcement, but it is something to think about. Then the question is, I don't know if we have provided copies to the HHS Data Council, but what I would suggest is, or at least what I would ask you, do you think this is worthy of reporting to the HHS Data Council, this report?
MS. GREENBERG: Is there anybody who doesn't think it is?
DR. COHEN: I don't know exactly what the data council does.
MS. GREENBERG: The HHS Data Council is made up of either the head, or his or her representative, of all of the components of HHS. You have CDC represented. You also have NCHS because it is a statistical-- this is obviously about data. That is why it is called the data council. It was established around the time of HIPAA as a way to try to coordinate and cross fertilize and integrate data. You just heard Jim say, in fact, it has been asked to now review the whole data portfolio of the department. It also makes recommendations. It, itself, doesn't really have any resources, but it makes recommendations on standards. It just did on 43-02. It also makes recommendations on the budget.
DR. HORNBROOK: On the president's budget?
MS. GREENBERG: Yes, the president's budget, within the department. It makes recommendations on what should be supported, what needs additional support. At least, to some degree, that also fills a role of the data council, not so much-- it provides information that allows the co-chairs of the data council who are Jim Scanlon and, right now, Bruce Cohen from HRQ to make recommendations in the budgetary process.
It plays an important role. In the past, some reports have had recommendations of the committee that we thought were relevant to multiple agencies within the department. If we are only making a targeted recommendation to NCHS or CMS, probably the data council is not the place you go. Of course, NIH is represented, HRQ, all the, what we call, OPDIVS, operating divisions. If it is a cross-cutting report, and there are things that you would like to see the department do, particularly in a cross-cutting way, one thing that has been done is that either the chair of the full committee or a chair of a subcommittee, one of the leadership team, we ask-- and Jim, of course, is the co-chair of the data council, which does mean that we have a little bit of an in here, and he is always looking for agenda items-- to make a report. It is an opportunity to disseminate the report to these people, and, in particular, to ask for their feedback, address and answer their feedback, on any recommendations that you feel would benefit from shining the light on them. This, to me, seems like-- and we haven't done that for awhile. We did it a number of times back when Simon Cohen was chair, et cetera. It would seem to me that this might be a likely candidate for that.
DR. BREEN: I have a suggestion. Would it be possible to get on the agenda to present it and say that we are going to develop some recommendations and we could get back to the committee? I'm not sure-- do we have strong recommendations at this point? It seems to me that the work group that Jim Scanlon was talking about this morning--
MS. GREENBERG: No, I'm talking about this report.
DR. BREEN: That is what I mean.
MS. GREENBERG: Didn't we have some recommendations that--
DR. COHEN: Yes, we have the conditioning of federal role, which I think might be--
DR. BREEN: Well, that's kind of vague.
DR. GREEN: Let me jump in here. I apologize, I feel like a real hate-monger because if you look four pages in from tab five, that seven column table, this is someone who knows how to do public relations and dissemination. It is quite clear that she is very knowledgeable and is offering the committee expertise. I welcome it. I think from our discussion last time that there was some enthusiasm on the part of the full committee that we talk about this in subcommittees and actually get ourselves organized.
I was okay with that until the noon time discussion. Jim said that this new work group, it is all about access and use, access and use. The stuff we are hearing, data ratio, our audiences for different products need to be defined. As important as the data council is, they are only one.
MS. GREENBERG: Of course, that was just my first-- I just was putting it on the table. I wouldn't say stop there.
DR. GREEN: Then she started with communication-type. We can have multiple products targeted to different audiences for different reasons for different delivery methods if we have someone will own it, make sure that it happens, and if we know what the start date will be dissemination of the piece of work. Then of course, people like the nerdy guys on the committee, we would love to know something about whether or not it goes anywhere, if people ever look at it, does it have any impact, and that sort of stuff. It's that last column.
This report is really good. I know it from several directions, because people are calling me about that report all across the country. Their usual question is where the hell did it come from? Just very much like the NAHTO thing. I think we have something really important here.
Part of subcommittee work in my view, and I think this is what Linda would be saying, is that part of our committee's work, when we decide to do it like we did last time and like we just finalized, part of that discussion should be what is going to be our dissemination strategy for the product that we made. I think that is what she recommended. I invite you guys to push back if you say that we shouldn't start taking this more seriously. If you want to take it seriously, please comment. Make suggestions for how we can do it.
MS. GREENBERG: I should have mentioned, by the way, that we are already, we are very close to locking in a date for a webinar. Linda Kloss approached the eHealth Collaborative to sponsor a webinar on this report and they were happy to do so. I believe it is going to be on April 10. Those of you who would be part of it, I think have been informed. That's something we have also set up.
DR. COHEN: The data council is fine, but again I agree with Larry, this report, I've looked over-- I haven't been a member of the national committee a long time, but I have looked over things we have done and this is not a typical report. This resonates with a very different audience than people who typically engage with the issues that we have been dealing with most recently. I think when I go to the HP 2020 website, a link to this would be great, or the Health Indicators warehouse. There is so much going on around community health needs assessment and community-based strategies, the whole match group. There are so many different places where this kind of product is a wonderful template for them to begin thinking and help guide their work. I think we need to figure out strategies, but we need to look well beyond our traditional target communities.
DR. BURKE: The outputs of the work of the past groups in the committees, there is a lot of variation, and it could be small, big, or targeted. Linda, I would guess if she were here, would say, as you have, that we need to consider that as we are doing the work, preparing the output. The last question is who needs to hear it, what is the preferred method of learning about it, and its fit with whatever else they have and haven't heard about it so it doesn't come out of the blue. It won't be the same answer for each effort, each initiative, or each group. It needs to be customized. It can't be as templated as we would like it.
DR. COHEN: What can they do with it? Why are we telling them this? What can they do with it?
DR. MAYS: One of the things is that, and I don't know what the resources are, because in the dissemination plan sometimes you have to break it down so that there is a little one-pager that goes to this group, an executive summary that goes to that group, but then there is an animated version that goes to another group. The question is whether or not there are the resources to do that. The second thing I want to say since I have the floor is to make a recommendation. When we put it on the web, one of the things to do is there are some groups that when they give a paper away or a report away, they make you sign in so that then what they can do is take you to another page that shows you all their reports and stuff. The reason they do that, for example, I don't know if you have ever published an annual review, they make you download it and then they tell us what paper is downloaded the most.
You would be able, in terms of your budget and all that sort of stuff, to say that this was downloaded 10,000 times. Then you build your constituency by having them sign. One of the things that we put up on our website was that we asked people how do you anticipate using this, and that we found very helpful in terms of when we were doing our SINA(?) grant to back and say what it is that we thought people were going to do with our work.
MS. GREENBERG: From the point of resources, first of all, we can explore this and other proposals as well. We are trying to update the NCVHS website. We have had some problems with being able to move that contract forward. In any event, and I know that I have been saying that for awhile, what can I say? I am not suggesting that you completely forget about resources and recommend ten-piece bands and going to every community and handing out ice cream and the report, but on the other hand, given that you know what this committee is and you know what the type of its reports are and you know the constituencies that you deal with and those that you think might benefit, I think what you need to do is, in addition to the usual suspects, do some brainstorming to come up with some recommendations, prioritize them and then we will see what we can do.
I don't want to start off, even though we have budget limitations, but in the NCHS budget for the NCVHS, we have other agencies that are partners. Many of them are sitting around the table. They have ways to reach out. I don't want to say that we can't do that before we have even explored it. When the resources came up in the Executive Subcommittee, that was my position. I can't tell you that we will do everything that you recommend, but this webinar isn't costing us anything. There are a lot of ways to push things out.
MS. MILAM: Bruce has identified a number of groups on the public health side, so perhaps we need to explore different aspects of health as well as privacy. I know that there are national public health lawyers' associations, and a lot of other groups that would be interested. Maybe we ought to take a dive by subject matter and identify the groups. Somebody would then learn more about the group and then tailor the communication strategy to the group and how they would want that information.
MS. GREENBERG: I would think, too, that although we will announce the webinar on our website, and I assume eHealth Collaborative will, we should push out information to many of those groups, NAHTO, others, telling them, put a link to that, et cetera, so that we have the multiplier effect.
MS. FRANCIS: There are a lot of really cheap list-serves, that if you know where to hit, could be of interest. For example, anything that has anything to do with privacy, the health lawyers and the International Association of Privacy Professionals, there are major bioethics list-serves--
MS. GREENBERG: This has privacy recommendations. Maybe your recommendation, Sallie, makes sense, to segment this.
MS. MILAM: I think you have a strategy, but I think to capture everybody's input, we need to start with one category and work through it, and then move to the next one in order to figure out what are the different categories to start and just move through them. We don't want to loose Bruce's, but I'm not sure-- is anybody developing this list? I think we need to get it a little more actionable then next steps.
DR. GREEN: Why don't we make a decision that the committee and the staff of this committee and the liaisons will leave with a work assignment that by a week from Friday, they email Debbie a list of audiences that they think would be interested in that report as a first case study.
MS. JACKSON: That will be kind of the beginning of filling out the template, which, at this point, we have been giving to you in paper, which in this time and age is not feasible. What we wanted to do was make sure that all the subcommittees attack this. On all of the subcommittee breakout agendas there is this same item. Everyone is given the same project because after this meeting I can send a template out electronically. That can be a beginning to start listing, and if you can't fill out all the columns, no problem, but just so we can get started as a group along targeted areas, then they should be--
MS. GREENBERG: Sure, and in particular if you can point us to people who have lists or organizations, email addresses, people that we can ask to send it out or can put a link to it, any information that you have will be helpful to us and will be distributed, and it will be less effort to try and track down those contacts. Sometimes, and Debbie being the one who often does it, I know it can be very time consuming. If you don't, fine, give us the idea, but if you do, say to contact this person whose email is this, and they can give you access to these other groups.
MS. MILAM: One group we haven't talked a lot about and I'm not sure-- I'll be really quick, I just saw your hand-- that we haven't talked a lot about is I know that there are associations of small government municipalities of communities--
DR. HORNBROOK: There is the National Governors' Association. There is the Mayors', ASTO, APHO.
MS. MILAM: We need those people.
MS. GREENBERG: We can develop a tailored message, depending on who the constituency is, with a lot of the common information, but something to grab them, a hook. If you have suggestions on that as well, as in these people are particularly interested in x and y--
DR. BREEN: Have you already sent it to the people who presented at the hearing?
MS. GREENBERG: Well, that certainly is the intent. Have we sent it to them?
MS. JACKSON: That is the intent. I don't know if we have that out.
CAPT. COOPER: It would be very interesting to look to find out how some of the things indicated in the report line up with some of the community work that NIH does because it is community engagement, community participatory research, the partnerships and collaborations, so is this a document that could be referred to when you do PAs or RFAs or some type of a hot link.
In terms of, as people are starting to do work, just trying to get it to different agencies and then how do you begin to get buy-ins. You don't have to have a lot of resources. For example, within the research centers for minority institutions, which is a congressionally mandated program, collaborations and partnerships are required. It is not a question. In fact, we are doing a big webinar on that on the 24th of March. It may be an opportunity to put it out and to share it with all of the sites that they know about to document, and they can make reference.
When you look at some new upcoming RFAs and PAs that are coming out as they relate to community-based participatory research, this may be the opportunity, in terms of helping to provide some of the guidance, and how do you identify the community or the stakeholders, just to reference in terms of how you get people to start thinking about it. Whether it is at the local level, engaging the health departments or any decision makers within those constituencies because they are the ones that help to make the decisions and help to provide that level of care. It may be in terms of as we look at all of our different agencies, and to find out where it is that there may be a link with the work that is being done here and how we get that information out.
MS. GREENBERG: That is a great idea. Several of the communities said that they were very surprised that we found them. They thought they were laboring in the dark. One of the things which-- I love that suggestion. If there are people trying to do this kind of work, let's let them know about this.
DR. GREEN: I think we should take an action. It goes something like this. I would entertain a motion from somebody that says that the population subcommittee is enthusiastic about assessing the potential communication strategy and we are happy for our community health data initiative report to serve as a pilot effort to solicit suggestions about how to do that using Linda Kloss's table.
MS. JACKSON: I will give you another example. There is a HIPAA 10th meeting going on at the end of this month-- HIPAA summit, and what a perfect place for our HIPAA report. The expanded report that Walter and the Standard Subcommittee, with assistance and input from all the subcommittees, that it pulled together and embellished and enhanced report. We did the same with that that we are doing with this one. Getting that copied in a nice heavy stock and getting that targeted out to that meeting. Margaret A, who worked so hard on that report, she has contacts. There is nothing like that personal contact.
MS. GREENBERG: I think she is on the agenda. We have friends in high places.
MS JACKSON: Right, as you are. When you plug in, you want to plug into the hot spots.
MS. GREENBERG: So, you are going to send your template out to the subcommittee, staff, the two subcommittees, I guess.
DR. COHEN: You know, we had that new SharePoint website.
MS. GREENBERG: We can post it on there, too,
DR. COHEN: We can see what everybody else suggests.
MS. GREENBERG: Excellent suggestion. Use the SharePoint.
CAPT. COOPER: There was a website that the department had up before, it was on best practices. Communities across the country could send in a description of the programs that they were doing. They got a some kind of little token, I don't remember what it was, but I remember that Claudia Bikay(?) got one in terms of disseminating to rural populations. That website is still there, but it is not manned. Nobody is doing anything with it.
As we had the communities come in before and they were sharing information, it may be an opportunity even for them to submit and to share. Let's say if you were doing a tobacco initiative within your community and you really think that you have figured it out, it might be a way to get people to come together to share that type of information so that others can adopt it, and they don't have to reinvent the wheel, and then looking at what are some of the data issues that are associated with that. How do we make it into something that we can use as well?
DR. BURKE: Do we have a compendium in the department of rural access hospitals? Or critical access hospitals? Is there a compendium list?
DR. GREEN: Yes.
DR. BURKE: They are ripe for a community where the choices are limited.
DR. GREEN: Put that on your list.
DR. BURKE: Critical access hospitals with rural facilities.
DR. HORNBROOK: You could also do the Association of Hospital Administrators. There is a college of Hospital Administrators, the Professional Association of Hospital Administrators. I will be you every hospital administrator in those hospitals is a member.
DR. COHEN: Hospitals are concerned about doing community needs assessments to respond to the IRS and ACA initiatives. Channeling this through their public information department, whether AHA and other state hospital organizations, that could certainly resonate with them.
MS. MILAM: So the big accounting firms and the people supporting the hospitals, who are doing the consulting.
DR. COHEN: The people who are going to make the money doing the needs assessments.
DR. GREEN: No excuses now, you got it. You understand what the assignment is, just send it back.
DR. HORNBROOK: Are we going to send this to you?
DR. GREEN: No, we are going to send them to Debbie.
MS. GREENBERG: We're going to put it on the SharePoint site.
DR. COHEN: Post them on the SharePoint site-- there is going to be a template up for this on the SharePoint, and we are all going to go to the SharePoint and keep at it.
DR. GREEN: Advocate that if you want to, but it's okay to hit reply, and that's it.
CAPT. COOPER: Can I ask a quick question, only because I'm only glancing at this? Everything that is in here, we stand by, correct? There is a statement here, and this is on building trust, because building trust is critical with communities, and once you break that trust, you can close the doors so that others can't come in. It takes a long time to go back and rebuild that trust. We say all community members including health care, public health workers, and researchers must be able to depend on legal and regulatory privacy protections that guide persons and health information. What does that mean? At the community level--
DR. GREEN: There is a discussion of that in the report.
CAPT. COOPER: There is going to be something here that is going to offer the community some type of recourse, or--
DR. GREEN: Let me talk to you right after the meeting. We also agreed last time that we were going to park our discussion about future work of the committee, to devote our entire attention to getting the socioeconomic status hearing organized and put into place, and now we know that that has happened. We are going to get there. We agreed that we would spend a little bit of time listening to people about promising opportunities or places that you are saying the committee really ought to consider looking into, such as x, y, z. When you think about that, I am going to interrupt the issue to ask you all a question, how many of you, if any of you, are going to go to Barbara Starfield's symposium up at Hopkins in May?
CAPT. COOPER: There is limited-- I sent the response back, but I haven't gotten back the response that I can go, so it's questionable.
DR. GREEN: But you are planning on going. Are you planning on going? Do we have anyone that is planning on going to it?
DR. BREEN: I've registered, but I didn't want --
MS. JACKSON: We were there for the celebration?
DR. GREEN: Thank you. Back to the agenda item.
DR. BREEN: Are you going, Larry?
DR. GREEN: I am going.
DR. BREEN: I'm not surprised.
DR. GREEN: What do you want to do next?
DR. HORNBROOK: You mean right now?
DR. GREEN: Until 5:30. We will adjourn at 5:30.
DR. HORNBROOK: I guess it was earlier this week at the Quality hearings, that we were talking about potential uses of electronic medical record, and I reminded them of the FDA's mini-sentinel project, which is trying to get 100 million covered lives to surveil for drug safety. That includes all of Kaiser as one health plan. It includes Humana and United Health Care, so those are the big, big players. It includes Group Health and Geisinger and Harvard Pilgrim and Partners.
It's all the sites that have either tons of claims data or full comprehensive electronic medical record data that covers births all the way to deaths. You can look at immunization safety. You can look at drug safety in kids. You can look at drug safety in mothers. You can look at drug safety in the elderly. You can look at patients in end of life care. There are actually two things that are going on there. One is that it is not a research project. It has no IRB oversight. It is public health surveillance under the public health law, protection of public health.
That activity is the FDA drilling down into your medical records if you are a member of these associations or member of the insurance companies. The insurance companies have to promise FDA that if they use the claims data that they also have access to a medical record under that claim. They have to be able to drill down into the physician's practice, extract the medical record pages if it is electronic, the data, and give it to the FDA if that person is a signal in some sense about some even they are looking for.
They are doing two kinds of things. One is defining a particular adverse event that they want to find, whether it exists or not. So, there is a theory about a particular physiologic link or biologic link or protein signaling pathway, they go out and find everybody who go exposed to that drug and then look downstream for certain events that show that this person is having that hypothesized side effect.
They are also doing, sort of churning basic pass of surveillance. They are trying to develop statistical techniques, which we were doing during the bioterrorism scare, to look for any cluster of events statistically that are somehow close in Euclidian space and hyper-dimensional Euclidian space to suggest that they are not random. Then they look at them and decide if it is just an unusual coalition of chance things or is there something here that you could dream up some sort of physiologic reason for it. Then they go and take that hypothesis and put it back out, look for the exposure to the drug and look for the events. Of course, this is meant to go on from now into the future. The vision, of course, is that the whole country has their medical records under FDA scrutiny for any kind of adverse effects on unsafe drugs.
It is eventually, I think, going to be devices as well, and immunizations. CDC has been doing most of the immunization safety surveillance so they have a vaccine safety data project. In any case, when we talk about this, if these communities could figure out some way to mine the mini-sentinel for community health initiatives and problems, or bridge the mini-sentinel data into the justice data or the education data in their town, in their school district such as drug arrests, automobile accidents.
One of the things I'm aware of right now is how many people are in car accidents who get very serious injuries. You get it on the newspaper and then the person who is hurt disappears. Yet, if you know anybody who has been in a severe accident, there are hundreds and hundreds of thousands of dollars in medical expenses and lifetime disability. There is no way that we have any way of getting the human suffering and medical care involvement of drunk driving. We can get the deaths, but this long tail of people who survive the drunk driving accidents, and of course gunshots and personal violence, are sort of unusual public health issues that are harder for us to deal with. All of the sudden when you can place a car accident and arrival at an emergency room, then you're combining the emergency room data with motor vehicle accident data, and then the utilization trail after that.
You have the national cost accounting, health cost accounting system, but you are also looking at who is getting those costs. Are they all different races? What kind of race? What kind of age? There is an amazing-- and, of course, the privacy experts are just quaking in their boots about the way I'm talking, of course.
MS. FRANCIS: My understanding from, and this is an open question that I don't know the answer to, but I have actually been trying to figure out what is going on with mini-sentinel. I have spent time on the FDA's website, and I've tried to find all of the public representations of it, including the specs. They say, in the various published documents, that it is all query-based. That means that you keep your data.
DR. HORNBROOK: The health plan keeps their own data.
MS. FRANCIS: Data is not publicly available. They send you a question--
DR. HORNBROOK: No, it's not publicly available, but they are doing the will of the FDA.
MS. FRANCIS: Right, but--
DR. HORNBROOK: The FDA does not get PHI.
MS. FRANCIS: They send you a question.
DR. HORNBROOK: Or a computer program.
MS. FRANCIS: Right, a computer program to stick on your data--
DR. HORNBROOK: Yes, and all the data have been harmonized to a single data model.
MS. FRANCIS: Yes, to see if there is a pattern, which--
DR. HORNBROOK: Or to run in the background continuously for 365 days looking for a pattern.
MS. FRANCIS: Right, but that is not-- they're getting the data.
DR. HORNBROOK: Correct. They are getting the intelligence and a summary of-- yes. But nobody consented personally to using their data in that way.
DR. COHEN: You mean nobody in Kaiser agreed to allow their data to be used like that?
DR. HORNBROOK: Of course the corporation officials did, but we never ask our members except in the general terms of the membership contract.
MS. FRANCIS: Actually, I'm writing a paper on syndromic surveillance. There are similar questions with it, which is why I was trying to figure out about mini-sentinel. Part of what I was interested in is that the privacy questions are really different if it is like you running your analytics.
DR. HORNBROOK: If it is an outsider personally using individual level data.
MS. FRANCIS: If it is they are giving you an analytic to run, and so it is you, Kaiser, or you, Group Health, or whoever it is, running the analytics and nothing goes back to the FDA other than-- nothing of interest or--
DR. HORNBROOK: Sometimes you have very rare events, though.
MS. FRANCIS: Or we had one rare event or five-- there were five cases of a patient who had this side effect from this drug. The privacy questions of that, it seems to me, are really different than if the FDA knows who that patient is, or if you contact that patient and say, by the way, did you realize that this might have been linked to the drug?
DR. GREEN: Let's not argue the case. Let's get more nominations.
MS. FRANCIS: It's a very interesting set of questions.
DR. GREEN: That's a very interesting proposition. Does anyone have another one?
DR. COHEN: I do. The daughter or son of community as a learning system. For example, the focus here has been on traditional public health data and that has always been in our purview. I thought Mark was moving in that direction. When you talk about the more expansive definition of what public health really is and what quality of life is, we could make a wonderful contribution, I think, when we talk about health statistics.
There are enormous other data sets out there, environmental green space data. We could go through all the built-environment, the social environment, and all of these education data, all of these other sources, income data. People who do community health planning consider those as primary sources of information to describe what is going on and what they would like to see going on in their community. There has never been a space that integrates the traditional deficit model that disease model that public health has always focused on and the concept of aggregated community assets as a necessary adjunct to understanding the quality of life in your community. I see population health as the focus, if we are really talking about population health, of that kind of exploration. I would love to see us expand in that direction.
DR. HORNBROOK: Bob, are you looking at SAT, standardized test scores as a way to weight education so that years of education is weighted by the quality of the school district you're in and school you're in?
DR. KAPLAN: No, we are not, but we should be doing more stuff like that. One of the things that has come to our attention is that disparities in life expectancy by state are almost perfectly predicted by disparities in fourth grade math performance.
So curious states that are de-investing in public education such as California, where I come from, it's a very difficult trail to causation. Recently, countries that have invested in public education such as Japan and Singapore have actually significantly increased their life expectancies.
DR. MAYS: This is probably what Mitch is going to talk about.
DR. KAPLAN: Mitch has some a really interesting thing, so what he has done is that they have these charter schools, these high-performing charter schools in Los Angeles. It is very difficult to get into them, so they actually select the entrants randomly and see if they can actually use the controls as people who are not selected. Unfortunately, the bad news is that it is not an easy fix to determine that self behaviors are more complicated. It is really interesting stuff.
There is another thing I was going to mention. This issue of community data, the Institute of Medicine had a report that came out roughly a year ago on data needs in public health. It is really very much a long those lines. What it's saying is that people who have a responsibility as state or local health officers essentially know nothing about their communities. If we had a chance on this committee to talk to them in some detail, they say they are flying fine.
Unless you are in Los Angeles-- well, California is a little better because there are states that have state surveys that most parts of the country, directors of Public Health don't know how many people are over weight. They don't know how many people are smoking cigarettes, and so forth.
DR. HORNBROOK: There are the state tobacco tax revenues.
DR. COHEN: I have not read the IOM report, so I really need to look at it. Coming from Massachusetts I would disagree with that.
DR. KAPLAN: Massachusetts-- there are some states that are much higher performance states than others.
DR. COHEN: By and large, I think you are accurate. Part of our recommendations in this report focuses on trying to figure out ways to provide that level of data. There are lots of things that I think-- I am most familiar with the BRFSS. There is huge movements to make that a more local survey. California does a great job through CHINIS(?) rotating counties. There is a lot of interesting work around going back and reinventing the wheel, synthetic estimates so that we can have community level estimates of obesity.
There is health school data in Massachusetts. We know what portion of fourth graders are overweight in, I would say, 80 percent of our communities. I think there are possibilities out there, but I think you're right, it's not ubiquitous. I think there are models out there what we should really try and emulate.
DR. GREEN: We know you are right in Colorado because we have counties that have no health departments. The health department doesn't know anything.
DR. COHEN: We have no counties, so that-- good news, bad news. It falls on the state to figure out how to do this.
DR. GREEN: In Colorado, more accurately it falls on the practicing community and the emergency departments and firefighters and school teachers.
DR. KAPLAN: As they say, if you have seen one public health department, you have seen all health departments. Some of them, the big cities such as Los Angeles and New York, are really good examples of health departments that have inspired leadership and have all kinds of information. We looked at a lot of public health departments in the south and other places, and they were actually primarily clinical providers.
MS. MILAM: In our CHIP report, one of the things-- I was looking back to the chapter on needs, issues, and gaps, and one of the statements we made on page 30 is that a publicly supported infrastructure of standardized data measures and tools would greatly enable and empower communities. It goes on to list a number of elements of infrastructure that are missing. I'm wondering if we would want to take an opportunity to explore building up some of that infrastructure.
MS. FRANCIS: That is a really sensible suggestion because it would be the correlate to the work group.
DR. GREEN: Exactly. What a good idea.
MS. FRANCIS: Obviously, we don't want to do what the work group is doing.
MS. KANAAN: What page is it on?
MS. FRANCIS: Page 30. Also the next steps with the privacy committee, I know we are meeting tomorrow, but we had a teleconference and it looks like we will be doing a follow on hearing and support for public health and privacy, so it would be nice to move forward with doing something on the population health end.
MS. KANAAN: How does your suggestion relate to Bruce's suggestion? Are they complimentary? Is one embedded in the other?
MS. MILAM: I think they are complimentary, aren't they? His suggestion could be one of the bullets on here that is not listed.
DR. GREEN: I think the way they fit is that he was talking about how we need to do a son or daughter at the communities learning health systems thing. You talked about four or five areas that we might go into. What I heard Sallie's point being is that we have found these communities have no sustaining infrastructure. They live from budget to budget with gaps in between, and they take two steps up and then they slide back two and a half. Then they come at it again with a new inspired person. They finally get tired and say it's someone else's turn. I think that is how they fit. Are you comfortable with that?
MS. KANAAN: Yes.
DR. HORNBROOK: The large places can hire better talent to get more grants. The smaller places can't hire the talent to get the grants, so they lose out even more and the whole public health sector shrinks.
DR. COHEN: Sustainability is always the major issue at the local level. If you can solve that, then these projects would have more than the life of their champion or the particular granting cycle. Very rarely can they be built into the ongoing budgets of these communities.
MS. KANAAN: I'm not sure where this fits, but actually what Mark was saying initially, I think we might have made it. I put a little case in the report about this project in our county called, Chronic Users of System ER, which is trying to address amongst practitioners within the safety net the frequent fliers issue that I think Atul Gawande wrote about in the New Yorker. That is one case that would be a very interesting case to focus on as a focus for the kind of general effort that the two of you were talking about.
One of the very practical issues that I think communities large and small are facing is the frequent fliers and being able to amass, aggregate, whatever, the assortment of data across determinants, across providers, et cetera, including law enforcement, emergency rooms, et cetera, local AIDS shelter, et cetera.
I know in our county that just data access and then figuring out how to leverage the data is an extraordinary problem. I don't even think that is unique to a poor rural community. I think that is probably a more common problem. It might be an interesting kind of case study that if the committee could develop a template or something of determinants just in relation to that, just as one sub-project. It would be a tremendous contribution, I would think.
MS. MILAM: We have the foundation for it. I think we have testimony about it from one of the communities using HIV to address their frequent flier problems. We can build on that.
MS. KANAAN: There are some models out there.
CAPT. COOPER: Just another piece adding to the issue of sustainability, one of the burdens that we tend to put on communities is that, as you say, they get one grant or an investigator gets one grant and a grant typically runs 3-5 years, and then you have to chase the next grant. You start chasing the next grant about mid-point of when you have the current grant.
One of the things we see in the federal government that we tell grantees all the time is that they need to collaborate, they need to partner. Across the federal agencies, we don't do a great job on collaborating and partnering. Even to the point that there are some communities that may have seven or eight different NIH studies in that same geographic area. The burden on that community is that demographics are demographics. The demographics are not going to change. You have to go and ask that person the same thing over and over again, and there is no attempt at trying to coordinate that type of information.
DR. HORNBROOK: Because participating in a research project is a HIPAA entity question. You can't tell anyone else that they are in your project.
CAPT. COOPER: But I think at the planning stage, if you look at something like the G-map, which is a big thing of mine, geographical management of programs, that what we are really looking for and when you look at the Affordable Care Act, this is a prime time. That somewhat takes care of an issue of access that has always been a problem in the past. Instead of going after a community in terms of one disease or the other, what we are really trying to look at it is having healthy communities. If I save somebody from cancer and they have a coronary tomorrow, I really haven't done anything at all for that community in terms of that risk.
I think that looking at the whole issue in terms of sustainability and how we have to foster this issue in terms of collaboration and partnerships-- and I can tell you that when I was at NCI, we didn't necessarily know what Nancy was doing over in the next building because we don't share that information. Fostering that is not encouraged. What happens is that you take it out at the community level, and you may get a community all pumped and excited because you have engaged them in the research process and what is going on in terms of their cancer, and they say that they can't go in to take care of themselves because they have an elderly parent at home that they have to take care of because they have this problem or the other, or my husband has diabetes so they want to know other information, but you're a cancer project so you don't deal with issues of co-morbidity.
When you talk about issues of sustainability and how we could help foster some type of partnership and collaborations not only at the federal level, but even within universities. We have universities sitting right next door that are competing, and I'm not saying that it will take care of the independent rights of an investigator so that you can't continue to nurture your career, but the question is how do we figure out some plan if we are going to push the issue that we realize the community is an important part. Community is not only the lay individual, community is anybody that sits in that geographic area.
Agenda Item: Summary, Next Steps and Wrap-up
DR. GREEN: Once again we have confirmed that you have no ideas, nor enthusiasm. We have a minute left, is there someone that is going to leave us feeling totally neglected, who has something else they want to put on the list? We will start with these six. We will distill them down. We will do the usual routine, start thinking about resources, staffing, what is plausible, feasible. I suggest that Sallie and I work with you guys to turn this around through some sort of email conversation over the next month or six weeks.
DR. KAPLAN: We don't have a summary measure of population health. This has actually been in multiple IOM reports. It has been around for a long time. The health objects for the US repeatedly have said that it is something like a quality just like a healthy year of life , and that is something that we need to monitor in the population of the country and actually, we have never done it. There has never been a way of tracking the progress toward that objective.
DR. BREEN: Which objective are we talking about? I didn't hear.
DR. KAPLAN: The overall objective in healthy people 1990, 2000, 2010, one of them in 2020, is to extend healthy years of life, quality of those life years, and because there is no measure to do that, we haven't been able to evaluate progress. There have been multiple reports that have said that somebody ought to do this.
DR. BREEN: Yes, we are having trouble measuring that disparities objective, too.
DR. MAYS: I thought that NIA was actually-- when we did the leading health indicators, an IOM report, what we heard was that NIA is actually developing some measures.
DR. KAPLAN: I don't think so.
CAPT. COOPER: See, institute to institute part.
DR. KAPLAN: No, we are not an institute, we're the directors of --
DR. GREEN: We are at the witching hour here. You guys want a break before you take the hike. I want to thank all of you for all of this participation and fun. You have two work assignments coming.
Whereupon, at 5:35, the meeting was adjourned.