[This transcript is unedited]
Department of Health and Human Services
National Committee on Vital and Health Statistics
Subcommittee on Privacy, Confidentiality and Security
Subcommittee on Population Health
September 21, 2011
Embassy Row Hotel
2015 Massachusetts Avenue, Northwest
CASET Associates, Ltd.
Fairfax, Virginia 22030
TABLE OF CONTENTS
Plans to Respond to ANPRM on Human Subjects Protection – Common Rule
P R O C E E D I N G S (2:30 p.m)
Agenda Item: Plans to Respond to ANPRM on Human Subjects Protection – Common Rule
DR. FRANCIS: I would like to welcome everybody to this joint meeting of the Committee on Privacy, Confidentiality, and Security and the Committee on Populations of the National Committee on Vital and Health Statistics. I am Leslie Francis. I currently am Chair of the Privacy, Confidentiality, and Security Subcommittee and a member of the full committee. I have no conflicts.
I believe the first thing we will be doing is introducing who is here. Is that correct? Yes.
DR. COHEN: Bruce Cohen, Massachusetts Department of Public Health, member of the full committee, member of the Populations Subcommittee. No conflicts.
DR. NICHOLS: Len Nichols, George Mason University, member of the full committee, member of the Populations Subcommittee. No conflicts.
DR. KLOSS: Linda Kloss, member of the committee, member of the Privacy Subcommittee. No conflicts.
DR. WALKER: Jim Walker, member of the full committee. No conflicts.
DR. GREEN: Larry Green, member of the full committee and subcommittee. No conflicts.
DR. MILAM: Sallie Milam, member of the full committee, member of both subcommittees. No conflicts.
DR. SUAREZ: I am Walter Suarez, member of the full committee, member of both subcommittees. No conflicts.
DR. MIDDLETON: Blackford Middleton, member of the full committee, member of the Populations Subcommittee.
DR. MAYS: Vickie Mays, member of the full committee and member of the Population Committee. No conflicts.
DR. BURKE: Jack Burke, member of the full committee, member of the Privacy Committee. No conflicts.
DR. HORNBROOK: Mark Hornbrook, Kaiser Permanente, member of the full committee, member of the Populations Committee. No conflicts.
MS. KANAAN: Susan Kanaan, writer for the committee.
MS. BERNSTEIN: I am Maya Bernstein. I am the privacy advocate of the department and the lead staff to the Privacy, Confidentiality, and Security Subcommittee.
MS. JACKSON: Debbie Jackson, committee staff.
DR. QUEEN: Susan Queen, ASPE.
DR. SORACE: Jim Sorace, ASPE.
DR. DECARLO: Mike DeCarlo, Blue Cross Blue Shield Association.
DR. JONES: Katherine Jones, CDC National Center for Health Statistics.
MS. GREENBERG: Marjorie Greenberg, NCHS CDC Executive Secretary to the Committee.
MS. WILSON: Nicole Wilson, Veteran’s Affairs.
MS. LORESH(?): Katie Loresh, Cornerstone Government Affairs.
MS. BICKFORD: Carol Bickford, American Nurses Association.
DR. FRANCIS: Do we have anyone on the phone? No. Okay. We have an absolutely packed agenda. I want us to move very quickly through at least some of the beginning bits.
As the current chair of the Privacy Committee, I just want to alert people to the fact that I sent around a memo that was my little compendium of all of the issues that we had been noticing over the years that I have been on this committee. The aim of that memo — and I am happy to provide copies to people who do not have it — was just it picked up on the various lists I had had of to dos, not dones, and so on. I will send that around because I think it is useful food for thought for where we might go next. A lot of where we might go next, at least as I see it, will be coming from the discussion of the report we will get to in a bit. I just wanted to call your attention to that document.
The second document is actually our first agenda item, which is we are hoping, as a full committee, to send in comments to the ANPRM. The deadline for those comments is the 26th of October. I had a crack at —
MS. BERNSTEIN: Because there are two, we are talking about ANPRM on the common rule and not the metadata one?
DR. FRANCIS: Not the metadata one.
MS. GREENBERG: We will actually be discussing that one tomorrow morning.
DR. FRANCIS: Right. This is the one on the common rule and HIPAA. I had a crack at doing a couple of things. The first was writing an introduction, which emphasizes two themes. One is that there are some assumptions made about information risks and second that NCVHS has some things to say that are based on our prior work. That is the goal of this, not new stuff.
I picked out some of the specific questions proposed in the report — I mean in the ANPRM. I started. I did not get all the way through, but I need help on some of them, particularly the interplay with public health. There are a bunch of public health folks here that I figured would be enormously good help.
What would be, I think, in the 15 minutes, perhaps, that we have for this, give or take a couple, what would be helpful would be any general thoughts about the strategy that people have and then some volunteers to do some hands dirty stuff maybe over a drink, but get going a little further on this so that we will be in a position to have something that we can have sent around to the Executive Committee and then to the full committee, not, obviously, at this meeting, but in time for the deadline on October 26.
MS. BERNSTEIN: May I ask then what is the process for approving such a letter since we will not have another full committee meeting in person before the time of the deadline and the goal is apparently to get it in before the deadline.
DR. FRANCIS: The goal is to have comments. It is not a letter.
MS. GREENBERG: Even so, it is an official act of the Committee. We will have to have a teleconference, an open teleconference.
MS. BERNSTEIN: We can do that, Marjorie? You can set it up sort of towards the middle end of October, which would be before the deadline.
DR. GREENBERG: Yes. What is the actual date?
MS. BERNSTEIN: October 26.
MS. GREENBERG: Okay. For that matter, we will need to get — thank you for bringing that up because we need to do a Federal Register notice for that. We have time, but not a lot of time for that. We will do it like we did with the PCAST letter. That means we should have it — I am assuming there is going to be a lot going on back and forth by email and then we may need an internal teleconference of Leslie and others. Hopefully, we will pretty much have agreed to it at the time we have that call because we are going to have the call very shortly before the comments are due. Let me just look at the —
MS. BERNSTEIN: It is the last Wednesday in October.
MS. GREENBERG: The last Wednesday in October. Okay. We have that set-aside time, which would — on Friday afternoon. I do not know if that is the Friday afternoon.
MS. BRNSTEIN: There are five weeks between now and then.
MS. GREENBERG: October 21st is our, quote, unquote, set-aside time. I would say let’s plan on it being that unless you hear otherwise. We will tell people that tomorrow. That means — I think the Federal Register notice has to be 15 days. We need to do that as soon as we get back to the office.
DR. FRANCIS: I didn’t think we had anything particular to say about issues like the structure of informed consent or multi-center IRBs and things of that sort. What I tried to do was pick out the questions that I thought we had something pretty specific to say. Some of them — the questions are actually not easy to understand. A number of them ask multiple things. Some of what I also did was try to parse out what they were asking. Any thoughts just generally or volunteers would be fantastic.
DR. COHEN: I am happy to volunteer. I agree with you, the structure of the response is difficult to follow. It is an incredibly rich prose attached. This advance notice covers an enormous amount of material. From the public health perspective, I think in addition to trying to answer the specific questions, we should provide general overview comments on the issues that are raised.
In particular, I think we need to address using HIPAA as the de-identification standard from a public health point of view. I do not think it is a particular good one. That whole category of excused research, how we feel about that and what the potential benefits and challenges will be defining that category. Certainly, Leslie, you did mention multi-center trials from a state health department perspective. I am really concerned about delegation of authority to a single IRB if they are using state health department data.
Those are some of the issues. There are a bunch of others. I am happy to help.
DR. FRANCIS: Great. Great. That is a side of it that I obviously didn’t have expertise in and it would be fantastic. Just a quick — there are a couple people on the phone who have joined us I am told. On the phone? We can’t hear you. It was Gail Horlick. Say again?
MS. HORLICK: Gail Horlick.
DR. FRANCIS: Hello, Gail. Anyone else?
MS. HORLICK: I think Natalie is going to call back in. We both tried earlier.
DR. FRANCIS: Okay. Welcome here and we are glad you made it in.
MS. BERNSTEIN: They are our colleagues from the CDC in Atlanta.
DR. FRANCIS: Thank you so much. Marjorie?
MS. GREENBERG: The HIT Policy Committee met last week and they had some comments on this. Have you seen those?
MS. BERNSTEIN: Not yet.
MS. GREENBERG: I thought people might — I assume they are on their website. I have a hard copy, but I assume they are on their website.
MS. BERNSTEIN: Did they approve them finally?
MS. GREENBERG: I do not know. What is the status of those? It is just good to know.
DR. TANG: Both the draft letter and the powerpoints on the website are already. There were comments from the Committee. The workgroup was going to update the letter and then present it at the next Policy Committee before it is finally approved. They approved of the recommendations and there are two parts. If you wanted to go to the slides, you could see what —
MS.GREENBERG: Primarily, their comments, as understandably, were related to electronic health records for the most part.
DR. TANG: They got into the research versus non-research, which is a big deal. I think that is the biggest deal is to sort of try not to do what is generalizable. Because in this day and age, everything you do you are hoping will be generalizable to more than one patient and even to be publishable. That used to be one of the lines you tried to use, but it was really very hard. They are saying, well, give it up. If we really want to be a learning health system, we are actually supposed to learn from it and generalize. I think that was one of the major — I mean, Leslie was on the target team, right?
DR. FRANCIS: They were actually using a similar strategy to the strategy we were thinking of using, which is look at what the principles have been with which they are approaching electronic interoperable medical records and start from there.
What I was thinking we should be doing is look at the kinds of importance of information for public health, importance of protections that have been crucial when data are put to secondary uses and that have been crucial in what we have been saying. Same strategy, slightly different areas of expertise and interest.
DR. TANG: We really don’t want to be — well, I will talk about two extremes. One is we just agree. Both parties agree. Another extreme is you actually have very different opinions and you write two different letters. Maybe there is a way to find a complementary space.
They talk about for care and not involving any third party. Explicit pieces — if no one but the provider has control of the data, then there are a lot of thing you can do — quality, et cetera. Once you get into the domain of a third party having any kind of control or storage — the reason for saying that is I wonder if our space is when you are turning it over to somebody else. I am trying to make it complementary.
DR. FRANCIS: I think that is right. I haven’t looked at what happened at the actual Policy Committee, but from what I know of the Tiger Team there is nothing inconsistent at all. We would want to be absolutely certain that there was nothing inconsistent, but it is just basically different domains of interest. Both are important.
DR. GREEN: Leslie, I want to repeat our gratitude for the heavy lifting homework and preparation you did here and the specificity of it, particularly. I have one suggestion about preparing commentary. It is based on the following assumption: there is a great need to clean up the research act around educational research and some of the perverse interpretations that have been made of what it takes to protect human subjects. It is my sense that the doors and windows are open for there to be some improvements that greatly enable it.
At the same time, particularly from listening to these exemplar communities that we have come to know so much about, there are risks to de-identified data that is clustered and lands in a neighborhood. It can drop the property values of the people living there.
This is complicated territory. I have so much confidence in you and others that are working in this territory. I would ask for just striking that nice middle ground where we try to seize everything we can out of this opportunity to make it easier for proper research to be done without undue regulatory constraints.
At the same time, the current approach, despite its complexity and — well, I will just say inadequacies, continues to fail, maybe, to achieve its fundamental intention of actually protecting people. You check all the boxes, but you still may not have actually protected human subjects. I would like to see our response strike sort of a balance that says, yes, clean this thing up, make it easier, and, by the way, be really careful here and here.
DR. TANG: This morning I talked about Baltimore(?), which might be a noose in a prior era that may not be in this era. What I am about to say is another one of those where I think a lot of our complications occur by all of these exceptions that we have to go cover up.
If we had comprehensive privacy legislation like was proposed in the mid-90’s that basically said the protection follows the data to anyone who touches the data, instead of, oh, you are this kind of person and you are not. Our complication is following the data. We should outlaw discrimination, not outlaw data. I think that is what has happened.
Again, I understood what happened in the mid-90’s. Today, one, data is flowing. I am not sure you can actually chase with special interest everywhere data goes. I would rather just have a law that applies to everybody who touches data. Then you know what you can do to every person who touches data.
In a sense, that is very simplifying. It is lumping. You could put it that way. But it might be where we could go. If you look at it from that point of view, again, NCVHS can take this higher look and say how do we make sure we leverage data — that is our primary mission — without undue harm, which is the other balance. Well, instead of chasing data with another reg and another party, why don’t we have a law of the land that just protects data, period, so that it can be used. I just throw that out as a simplifying plan.
DR. FRANCIS: Sally you had a comment directly on point?
MS.MILAM: I have a follow up for Paul. I wonder how far you want to take this. You know, a number of very large corporations — Microsoft and others — have lobbied Congress to have one comprehensive data protection law for all personally identifiable information, including health, including everything so you have one set of rules.
With global operations, they find it is much more effective to have one set of standards, instead of in the United States this patchwork quilt of privacy laws for health, privacy laws for financial, privacy laws for social security numbers — all of these different laws. Is that what you are suggesting: one protection scheme for all PII or one scheme for health?
DR. TANG: I guess I wasn’t going that far.
MS. MILAM: I was just curious.
DR. GREEN: Why not?
DR. TANG: Because I think this is one of the most sensitive — instead of causing inadvertent, unintended consequences in the other spheres, this is one you know that the world believes this is a sensitive area. You know that it has risk. We, in this community, have a lot of knowledge about it. We do not have that about finance. I would be scared of doing something like that.
DR. FRANCIS: One of the implications, though, I think of what you say, Paul, is that distinctions between, say, research, public health, and treatment are artificial, continuing to make the point, which we are aiming to do, that we need to have common protection.
DR. TANG: It is hard to define and classify, but because of that it causes the complications we are trying to go patch up. It just seems like you run out of patches. If there is a simplifying view or perspective, if there are simplifying rules and it turns out everybody can follow them, they would rather follow them. The effect could be negative in some aspects, but they would much rather have clarity. It is again what we talked about this morning with data standards.
DR. FRANCIS: To make sure that we get to the report, there were two other hands up — Vicki’s and Mark’s — and then with all of this I will start calling on volunteers to help add to this as we go along.
DR. MAYS: I think part of what we want to try and do is event though it is, even though it is about answering specific questions, also to insert a little bit of the philosophy. I think the philosophy that, again, for the Committee should be coming about the issue of protection, but it is protection of what?
For example, when I was looking through this and we were talking about, well, what is something that is emotionally charged, whether it is sexual abuse or physical abuse? I think it is the outcome, the issue of for one person it is or it isn’t, but is there something about the revelation of this, the asking of this that is going to result in a negative outcome that has to do with the person would not participate, et cetera?
I want us to stick with thinking about this within the context of risk. The risk is not just upset. I think we put a lot on upset. That is where it becomes an interpretation. We have IRBs that have come back and said collecting data on racial discrimination is very upsetting to people. We had to go in and say, no, they really wanted to talk about this. I hope we can stick with that.
The other thing is I am wondering — they are asking about greater risk and I am wondering if we could also do it the other way, kind of also wrap in that there are some things which are minimal risk. They should be treated as potentially minimal risk. I don’t know whether we can do that.
DR. FRANCIS: Applauding, for example, much of the carve out of re-review of studies where there is only data analysis going on and when the data are entirely protected security-wise that is a good example of where there just are not significant — once the study has been approved and the interventions are over, yes.
DR. HORNBROOK: I understand that one of the things that is covered in this set of proposed rules is tissue?
DR. FRANCIS: Yes.
DR. HORNBROOK: This committee could be dealing with the issue — we don’t have to, but I am just suggesting — could be dealing with the issue of tissue as biological data. That is, if you sequence the whole genome in a piece of tissue, that is data on electronic data sets somewhere. You do not need the tissue any more, you have the full genome sequence. That is your identity. That is unique to you.
In some sense, what they are trying to do in this particular set of rules is when you go into the hospital and have tissue removed, including blood, in the course of clinical care, when you are done that is trash. You have no property rights left. The book about Henrietta Lacks is an example of the fact that the economic engine exploited her tissue without any compensation to her. When you sign a regular consent form for anything in the hospital, it includes signing away the rights to whatever is taken out of you.
This is now saying that if you want to use that material for research, you are going to have to get consent. The tissue researchers are up in arms saying we enjoyed having this free access to tissue for our research without having to access for consent. Why are you going to raise the costs of tissue-based research in terms of adding this consent process? Of course, the privacy people are saying we have to treat the tissue just like regular data. If you want to do research on this person, you need to be consented to.
We could take a position on this. We could also just ignore it. But it is part of this whole sphere of privacy with the genetic revolution and how science now — you walk out of the room, somebody could pick up your skin and know you were here even though nobody, quote, knows that you were here.
DR. FRANCISS: As the Privacy Committee works further on this that is the kind of question that I think we need input on scope of what our comments should be. I agree with you. I think it is an enormously important issue. I went back and I read all of our reports and letters and I didn’t find anything that spoke specifically to that question. There may be something, but I couldn’t find it.
I think it would be really, really, really helpful if there are issues that anyone here thinks are super important like that, if you either know of something from NCVHS, a hearing — I didn’t go back and read all of the texts of the hearings. I read the texts of all of our letters and reports for the last ten years. It was a nice little read, but I didn’t read the hearings.
MS. GREENBERG: Did you have insomnia?
DR. FRANCIS: Only afterwards. It may well be that there is a lot, particularly with people like Marjorie and other staff people who have been here a long time, others who have been here longer than I have who know of things in NCVHS history that would be enormously helpful for things that it is hard to find.
MS.GREENBERG: It is not a topic that I think the Committee has addressed much. The one time in the last, I don’t know, ten years or whatever that I know there has been some discussion of it was when Ed Sondik reported on some of the issues that had arisen around biospecimens collected through the HANES survey. That was sort of informational and discussion. It is not an area that I think that the Committee has weighed in on.
MS.BERNSTEIN: It is possible. I am not holding out any grand hope, but it is possible that there would be a majority agreement on the Committee for something like that and if we have a meeting, could actually agree to it. Even if we haven’t said it before, this committee could —
MS. GREENBERG: That’s true. I was just responding to whether it had come up.
MS. BERNSTEIN: If you find that there is going to be a major disagreement, we probably don’t have time to take it up and settle it, but it is possible the Committee would want to make a statement about that if among this group is largely agreement.
DR. FRANCIS: Yes, particularly on the question of, say, identifiability and de-identifiability, which we have said some things about. Maybe to summarize it, we will be in very close interaction, the privacy folks, others of you, on developing this. Expect to get button holed by me for help on things.
Those of you who are not on the Privacy, but who would like to help, please do. I will button hole you. If you feel that there are questions or issues that should be dealt with that you either know something in NCVHS’s history that would help or you think it would be one of those that, as Maya suggests, we could get committee okay on, please holler. Okay? Hopefully, there will be a draft in about a week.
DR. HORNBROOK: Leslie, as a lawyer, have you advised anybody or talked to anybody about the forensic liability of tissue banks?
DR. FRANCIS: No.
DR. HORNBROOK: Ever thought about it?
DR. FRANCIS: Oh, that the — well, you raised the question of forensic liability of tissue banks, of course, there are huge issues there. I do not practice law. I have an active bar license, but I do not represent clients. No, I have not given representational advice, but, yes, there are big issues there.
DR. HORNBROOK: Personally, do you think the Committee should be commenting on something like that or just leave it away?
DR. FRANCIS: I think somebody needs to comment on something like that, but I am not sure in the context of this or given what we have done. I could stand to be fixed on that.
DR. GREEN: I think Mark’s question begs another question that we should settle here. Would this comment be restricted to comments on which we can reference prior work or a report or workshop or hearing of some sort or will this report be receptive to using published literature and expert opinion?
DR. FRANCIS: What’s the general view on that?
SPEAKER: The latter.
DR. FRANCIS: Okay so we go further.
DR.CARR: Well, let’s have a little discussion here. I definitely think we have a huge body of work upon which we can draw. It is important, for many reasons, for us to restate some of that and so on. I also know the landscape is evolving. That may impact some of what we say. I think if we are going to say something new. We really need to have a consensus around the table. I think published literature can guide us, but I am just very wary of saying something.
Our history is that we hold hearings and then we synthesize and make recommendations. In the absence of hearings, I worry a little bit about whether we have sufficient input on what we are saying. I would look at it case by case.
With regards to Mark’s issue, I do not know if we have to answer it. We can say has anybody looked at this without making a recommendation or make the recommendation that somebody should look at this.
DR. COHEN: One way, possibly, to do this is since it is an advance notice, is include, essentially, as a place holder, we reserve the right to address these issues in the final notice because that will certainly give us more time to penetrate more deeply into the scope of things we want to do. I think it would be good to decide in the advance notice if there are areas we wish to address, even though we might not cover them completely in the advance notice letter.
DR. FRANCIS: The way to do that is just to say — we do not even need to reserve the right because this is going to come out in a notice of proposed rulemaking. We could say, hey, this is a big, open issue. You need to think about it. Then you see what comes up in the ANPRM and then we weigh in if we want to.
DR. CARR: I think, actually, a lot of the success of NCVHS over the years has been to shine a light on the issues without answering them. I think that is fine to identify the issues, but if we are going to answer them and make a specific recommendation I think we want to at least have as a starting point our historical letters and reports.
DR. FRANCIS: That is helpful. Thanks.
MS. BERNSTEIN: Can I just quickly — I do not know how Marjorie feels about this, but when I think about an ANPRM or a proposed rulemaking, which will eventually come, it makes me nervous to think about this committee having hearing about it just because of the way we choose who gets to show up at the hearing. We have a very limited number of people we can invite. We do not have a scientific process exactly for inviting them. We invite who we think we want to hear from.
I think we could be subject to a lot of flak for not being completely inclusive. Informal rulemaking is the opportunity for anyone to make a public comment. A formal rulemaking is hearings. It just makes me nervous to think about us holding hearings when the Agency isn’t. I do not know how you feel about that, Marjorie. It makes me a bit nervous.
MS. GREENBERG: I guess I don’t have the same discomfort.
MS. BERNSTEIN: You also do not have to decide it right now.
MS. GREENBERG: If, through this process of looking at the ANPRM, we identify some issues that we say these are really issues that are important health data issues that we feel we would like to learn more about and get more input on, then I see no — there is nothing to prevent us from doing that. We always can have public comment at the end. When we did the Meaningful Use hearings we ended up having hundreds of comments as well as people testifying. It can be quite open.
You had cautioned us and I kind of agreed with you about once an NPRM or ANPRM is on the street, holding a hearing could possibly be problematic. I am assuming there is going to be some period of time here between the ANPRM and an actual NPRM. I do not think we should be necessarily hesitant to explore an issue if we think it is worthy of exploring.
DR. FRANCIS: One of the things that could come out of this could be issues that we follow up on. Justine, you get the last word because I think I feel the need to turn this over to the other folks.
DR. CARR: I think that we need to stay focused on what we think our agenda is on NCVHS. If there is an issue that comes out of this that is very compelling and very aligned with the agenda we have already set out, then that is the work we said to do. I do not think we should diverge from the work we have set out to do to have more to say in this ANPRM or otherwise.
MS. GREENBERG: There is one more item, though, on the agenda, before we get to the report — the community health — I think.
DR. FRANCIS: Well, there is the community — Larry has to leave, I think. The NAHDO plenary panel is at 4:30 so I was turning it over to Larry.
MS. GREENBERG: That is fine. I am sorry. I was confused.
DR. GREEN: As you can now see, we co-chairs have divided this session this afternoon amongst us. Leslie took the beginning. I am taking the middle. Sally is going to wrap it. We are in the middle.
I would like to call out, particularly because some folks may not have been here when Justine did this, but this handout and the slides that Justine presented earlier in the afternoon — do all of you have these?
MS. GREENBERG: The work plan slides?
DR. GREEN: Yes. The NCVHS work plan slides, September 2011. This is really a stunning and sufficient, in my view, framework for us to be thinking about what we are doing. We did not discuss it. She went through it really, really fast. I just want to call it out that we need to think about our work in Privacy and Populations in the context of these slides and this framework. It makes sense. It stays within the skin, et cetera. I just didn’t feel like we had a chance to consolidate that so now we have.
Susan, we are going to — I would like to just turn this over to you to take advantage of your being at that laptop and being projected. We have all been taking notes from the earlier discussion. Susan has already organized the first part of the discussion. We would like to just extend that discussion, clarify, get other people’s input into it. We can do this until about 4:29, 4:25, right in there. We have about a half hour here.
MS. GREENBERG: Do you have to leave at 4:30?
DR. GREEN: 4:30 is when we need to talk about the plenary panel at NAHDO.
MS. KANAAN: Do we need an hour for that part?
MS. GREENBERG: No.
DR. GREEN: It is not an hour, but we also have to come back to issues from privacy.
MS. GREENBERG: The question is how much time does Leslie need for subcommittee issues?
DR. FRANCIS: I ceded that time by handing out the memo.
MS. GREENBERG: I think you should take at least 45 minutes for this.
DR. GREEN: Great. You are going to be first up, here.
MS. GREENBERG: Can you make that a little bigger?
MS. KANAAN: I can. I actually am not planning to write on the screen as we talk. I will enlarge it. I made it small for a reason, but, actually, I can make it bigger.
DR. GREEN: We will go to 4:45 with this discussion and then call it for today. Vickie?
DR. MAYS: I am a little concerned, unless we are going to meet another time, that this morning we talked about the potential for some of these other areas. Are we going to have time at all to talk about whether we want to pull together a hearing on SES and some of the other stuff that Jim talked about because it falls under Population? Can we have some time to do that?
DR. GREEN: Of course. Again, next steps is a place where all things will funnel for us to plan on walking out of the room with a sense of next steps. Issues like that that you want to raise just get them into the conversation any time you want to.
For right now, what we want to do is get reactions to and improvements on the report we are creating. We are expecting to bring it back to the next full meeting of NCVHS for final approval and authorization that this is a good product and that we can publish it. That document we are seeing as a framework and a founding statement that will allow us to define our 2012 work, where we want to go next, Vickie, and that sort of stuff.
Today, we want to make sure that we get the document right. Some of you have been at the workshops. Some of you have not. I think that is perfect. That gives us a chance to play off of each other and have conversations about that. So, Vickie, what else would you like to bring up from what you heard this morning?
MS. MAYS: Right now, nothing.
MS. GREENBERG: I think you can plan to meet until 5:45.
SPEAKER: I need an hour in between dinner because I have stuff at the office that has erupted.
DR. GREEN: We will do our best.
MS. MILAM: Larry, I have been thinking about something with the report and I will just throw it out there. I thought about it before I heard Len’s comment this morning, but, you know, there are not a lot of HIEs making the clinical data available for population health at this point. I have been thinking about why that probably is.
It is probably because if you look at their maturity models, they are not there yet. They are just starting to do some clinical messaging. They are getting into inquiry. A lot of them are not even doing administrative transactions. Probably research is further down the road. But we did hear from a couple participants, like IHIE and two other HIEs, who were engaged in population health, but not really making the data available for research yet. I wonder what we might need to think about to do to support moving in that direction if that is something that we think should happen?
DR. GREEN: Len, do you want to say more about that?
DR. NICHOLS: Well, it is interesting you immediately inferred I was thinking HIE and I am walking way before I am running. I am thinking of hospital leadership, clinician leadership, employer leadership, sitting around a community table asking the question what do we do well and what should we focus on. Right now, my observation is except for the kinds of data you can pull off the CHDI website, communities are not really happy about their ability to discern are we doing well on low birth weight babies, are we doing well on cancer. They do not know.
What I was observing was hospitals often have clinical data that are not even NHIE, but they are aware, much more than the population is sort of what they have a lot of and what they need to work on. What they do not have is a mechanism for addressing it outside of their walls. All I was trying to get to was — I mean, if it is relevant, obviously it is a question for you all, but it seems to me when you talk about community and you talk about trust, you talk about going forward.
Take that as the observation that drove my comment. The policy solution that I have observed around the country is more and more people are kind of gravitating towards an all payer claims database. Not because anybody really thinks claims are great, but because it is the one vehicle folks can think of that might actually allow us to say, well, gee, we really are off the map on low birth weight or obesity or readmissions for congestive heart failure or whatever it is. Without those kinds of databases, you do not have that. That is what was in my head.
MS. MILAM: So building on your comment and thinking about the fairly new IRS requirement for health systems to do that community needs assessment, is there some kind of support that ought to be promoted or leveraged there?
DR. NICHOLS: Yes. I think the operable phrase is fairly new. I do not think it is operational very many places yet.
DR. GREEN: Just a quick response to that, I think it is operational in some places like the IRS.
DR. NICHOLS: Right, Larry, but the hospitals are now defining what it means.
DR. COHEN: A couple things. With respect to this conversation, I think we really need to keep our eyes on the prize. Again, I understand the value of clinical data, but when we are talking about population health, which is what really improves the quality of life in our communities, it shouldn’t all be focused on encounters with providers.
When we talk about data the community uses and needs for decision making some of it is clinically oriented, but most of it really is not. If we can get communities understanding the context of population health data, then they might be ready to engage in more conversations about detailed clinical data. It is a much longer conversation, but I do not want us to get trapped into focusing on all payer claims databases and other data sources that focus on utilization of services to provide the basic data communities need for developing policy and practice. I feel really strongly about that. That is not to say that as we move forward we cannot be using these data. That is one point.
The second point that I really want to raise about this report, in particular, including the anecdotes around what has worked and best models will really help. I would like to see that fleshed out. I think it is incumbent on us to focus on, you know, what we can offer or what is the marginal contribution that the National Committee can make to this conversation.
For us, with respect to providing data, I think it is around talking about where there are data that can be ubiquitously used by communities, where the Feds can promote that with the help of states and of hospitals and other providers. I think it has to do with what I call community-focused technology, which is expanding our ability to provide data at a small area in a variety of kinds of settings.
I am a huge fan of web-based data query systems. I think an enormous amount can be done in public/private partnerships to get basic data out for community use. We were discussing briefly earlier offline about the, I think, enormous value of small area estimates to help focus policy-related conversations. How much heart disease is in a community? What is the obesity rate in Prince George’s? They are questions that community planners really do not have any handle on where the expertise of Federal and State government and providers can help communities answer these questions.
This is where our marginal impact can be felt the greatest. I think it is incumbent upon us in this report to come up with very directed, specific options and recommendations about how our emerging data structure can help support policy that is going to be made with or without data at the local level.
DR. HORNBROOK: Just as an example of how far you can go, the FDA has the Sentinel Network. Right now, they are trolling through medication and diagnostic and vital sign records and electronic charts for probably 25 million individuals in this country without any IRB review. This is public health surveillance for the safety of our medication supply.
They are looking mostly for post-marketing, long-term bad effects of drugs that are never identified inside clinical trials because clinical trials are only six months long. There are a lot of drugs that we approve knowing that there is a risk profile that we will not know for quite a while, including five years and ten years down the pike.
This is going on under current technology right now. They are now into the point of developing programs that run in the background in the electronic record systems, behind the firewalls, inside Kaiser Permanente, looking for certain kinds of signals. When that signal occurs it goes to the coordinating center to see if the signal also comes from other health plans.
Rather than just saying they are sending out programs to execute via human being, these programs are running in some sense robotically. This is part of the dream of having millions and millions of covered lives exposed to certain drugs, exposed to certain diseases. What is happening is that they are looking not only at the exposures, but also at the downstream events. They find an event and then look back to see if there is an exposure to explain the event. They also look at exposures and look downstream to see if there is an event to see whether that exposure caused anything.
They are talking very sophisticated informatics tools here. When we talk about what the communities are doing sort of light years before that, but there is no reason why we cannot hopscotch over. The only thing that is missing here in this process because you have access to vital signs, you have BMI, you have lab test values, you have consumption of immunizations and health screenings available to you.
What you are missing is functional health status. If we, as a committee, could actually convince people that filling out a functional health status form for their health record, we would have a tremendous asset in this country for managing wellness instead of disease.
DR. GREEN: You new guys, this is your last chance to be new guys. Who hasn’t spoken up? John, do you want to jump in here?
MR. BURKE: I was thinking about the Sentinel remarks because we are also psyched for that study. The surveillance that it enables goes beyond the six month. It gets into co-morbidities. It looks at the drug in much more widespread use. It has been a very fertile area. I forget the particular case that came up a year or two ago, but it started in Boston. I don’t remember what it was, but these things are going on with that benefit of a lot of structure.
It is to say what we are talking about is, I think, almost predates this innovation. To agree, it doesn’t mean we need to stay there. Jumping over that is going to take the transformative effort that you described at the last meeting, which is really not doing anything incremental, but doing something really transformative.
DR. GREEN: Susan, do you have anything you would like to add?
MS. KANAAN: That expresses my response pretty well, I guess. Always trying to figure out new thinking. I have some of the new thinking up here on the board. Is that legible now or not? Okay.
These are some of the things that were raised. I actually, frankly, am not suggesting that we discuss and expand these further, although some of them warrant a good deal more discussion at some point. I just wanted to kind of acknowledge them and get them up there for further exploration at some point, maybe now, maybe later.
I also have a sense of urgency about some of the questions that are raised in the report, itself, where we said what do you want to say here and we really haven’t had enough discussion. There are some big topics here. The knowledge sharing architecture and steps, I have already talked a little bit to Blackford about that. He gave me some language.
I do not know if you see topics there. I think the first point is something that is already present in the report that maybe we need to make it more explicit. I liked Leslie’s word warranted. That is a good clarification. The role of providers, which is what Len mentioned or a couple of you did.
The topics that were raised during the meeting, this is just a list of them, basically, as a kind of a pneumonic. Paul’s point at the end about kind of sharpening the vision, in terms of standardized data and tools. I don’t know if anybody has any comments about these. There are also a few questions within the report that — three, in particular, that it would be very helpful, I think, if we could discuss them today.
I just wanted to raise one other point, which is a question that I have raised a few times by email at least to some of you and that is in your June meeting you talked about making this report bold and transformative. I am interested in your thoughts about are we there? What do we have to say that is either bold or transformative? Do we need to set a lower bar for this report?
That is really just something to be thinking about as we work. We are going to be working on this, now, for another five weeks or so before we have a draft that will be sent around for the Committee.
DR. HORNBROOK: I am sorry. I didn’t make it very clear. I was thinking your point about knowledge sharing architecture and Bruce’s point about word-based query tools — that is what I was trying to point to. There is a whole set of tools out there now that can allow you to move from very private, secure confidential data into data that is safe to share.
It means keep private data behind the firewall, but sending queries across that only bring out aggregated data. You need to have a community sense that that is a safe thing to do and that you trust the firewall and trust the query system not to give out data it shouldn’t.
MS. KANAAN: Thank you for saying the word query. I actually put a note in the latest draft wondering — I have seen a few mentions of query technology, which I guess is a kind of moving technology at this point and wondered if that is something. I would assume that is part of our bridge between clinical data and population health relevant data. Should we say a little bit about query technology in the report? If so, would somebody like to volunteer to be my information source on that? No volunteers?
DR. COHEN: I can help a little on state-based query systems. I am less familiar with the clinical query systems that generate aggregate data, but I am pretty familiar with state-based.
DR. SUAREZ: This is Walter. I could help on that. This, I assume, relates to the type of work that the SNI framework just started on query health, which deals with the standards and the methodologies to achieve federated querying in the health care system. It is not specific to public health, but it generally is a mechanism to query data in federated molds.
DR. COHEN: That would be a good place just to transition for this point.
MS. KANAAN: I don’t know if you may decide that that is too specific or too technical for this level of report, which is a roughly 30 page — I suppose 30 or 40 page report, but, anyway, thank you, Walter. We can talk offline.
MS. BERNSTEIN: And there are some projects going on, one, in particular, in ASPE. I mean, they do have to deal with claims databases, but there are projects to do queries where the raw data even de-identified is not available to the researcher, the person making the query, but only aggregated data, as Mark says, comes out of the query. You need to make a well formed query, but then what you get is something aggregated that is not identifiable.
DR. COHEN: To address one of the points you made, Susan, I also do not want to lose sight, when we talk about what data are important at the community level and talking about the quality of community life, we need, really, to go well beyond on the traditional suspects that we collect well — the disease-oriented deficit kinds of things.
I was not involved to hear the richness of the discussion at the May and previous meetings, but I really think to be most effective in providing data to communities, we need to go beyond what we have collected well and focus on a broader definition of public health. I really do not think we can state that strong enough. If our goal is to influence how communities improve their lives using data, some of it has to do with high blood pressure, but a lot of it has to do with bus schedules.
MS. KANAAN: I hope that message comes through loud and clear already in the report because we certainly talk a lot about social determinants. Making that more concrete with specific data, I think, would be helpful. One of the things I wondered about is the determinants of health, the NCVHS model that we had in our health statistics report, I wondered if somebody would like to take on the task of actually doing some at least for examples of data types across — Justine included that graphic in her slides for the NCVHS work plan.
MS. GREENBERG: Dan Friedman, it seems to me, did that. He, of course, was involved with the 21st Century — I don’t know if you all know Dan, but he was a former member of the Committee. When he was doing some work a few years ago with us I remember him doing —
MS. BERNSTEIN: We have some examples even from the February and May hearings of people who came to talk to us about their successes.
MS. KANAAN: And that is already in the report.
MS. BERNSTEIN: Right. Do you want more?
MS. KANAAN: Well, to be more specific about the specific kinds of data. Whenever we talk about clinical data, we also want to talk about all of these other sorts of data.
DR. COHEN: I don’t know of any public health web-based query system that builds in that information. So there is no place — there are very few state-based query systems that have information about housing, socioeconomic status, graduation rates, unemployment. EPHTN is trying to bridge that gap with respect to some environmental data, but not true social determinants or community assets kind of information.
That would be a wonderful contribution if we could promote the development of databases that integrate the traditional public health data with, I think, the emerging indicators that we know about that are important to community quality of life.
MS. KANAAN: I just want to emphasize that that would be — I think that would be a fantastic contribution. That is new intellectual work that this committee would have to do. It is really not something that I can do on your behalf. I do not have the technical knowledge. I can help write it up and think it through.
If that were a task that you wanted to set for yourself and it certainly seems to relate to the questions of architecture and how all of these things relate to each other, there is some further work indicated there.
DR. GREEN: Vickie is your comment still in this chain? Are you about to change the subject?
DR. NICHOLS: I am in the chain or at least I am trying to be in the chain. I want to just ask the question because I have been struck at how much activity is going on within HHS around the community health data initiative, the data warehouse and all that. I notice that it is not part of the deep roots and yet when I think about communities sitting around trying to use data to investigate what they have got, that is the first place they go. So look at my county versus those counties, which you can now do to an amazing degree in community public health as well as some social capital assets in different sources.
Is that what you are talking about? This would be new intellectual work for this effort or have you already done that? Is that implicit in the deep roots? Do you know what I am talking about?
MS. KANAAN: In fact, we reference the community health data initiative in a couple of place in the report. That is not NCVHS roots. That is an HHS project that we are certainly aware of. Our experience was that communities were not all that aware of it, the ones we talked to.
DR. NICHOLS: It is relatively new to being accessible on the web. It has always been there, but you had to go —
MS. KANAAN: It’s a resource. We talked about it a little bit at the February workshop, but people are just starting to be aware of it. If we decide — it is one of the things I am hoping we can discuss today is how much we want to really talk about an environmental scan. It is an important piece of the environment that we want to acknowledge if we decide to go there. To do justice, even at a very high level to what is going on in the wider environment means another ten pages and a fair amount of extra research, I think.
DR. NICHOLS: To that end and it may be relevant, is the Commonwealth Fund, you are probably aware of their state scorecard type stuff. They are about to release this fall a sub-state scorecard. They basically have gone back and every metric they could they take it back to the hospital referral region level. Not county, God help us, but they do do hospital referral region.
My only point is that and some work I am involved in for RWJ really — people are investigating as much as you can what is measurable at the county and/or sub-state level, which I think, given the timing of this, it would be good if you were aware of. I am happy to pull together what I would call a report on all of that. I do not know if it is going to rise to the level of inclusion, but I do think you should be aware of it before we wrap it up.
DR. GREEN: I think that sold. Vickie?
DR. MAYS: I kind of want to go to something that Justine said. I am sitting here and when you say jump in I am not sure where to jump in. I got really concerned when it was 30-40 pages. I mean, the landscape of what is up here — I thought we were doing like a 100-120 page report because of the landscape of what is up here if what you are going to do it be on the same page as kind of some of the activities that are going on.
The question, if this is to be for the November meeting, is are there recommendations and should we be discussing specific recommendations right now and then the substance of it are the things that we tinker with between now and November and add them in? In order to get a November completion, should we not know what it is we are recommending?
DR. GREEN: Let me react to that in two ways and I will take help from Leslie and Sally on this. Before we started down this road, we made a decision to take the perspective of the community. We have not decided that we are going to write the compendium about everything that is going on in partnership with communities at all of the issues. We are not trying to write a new text book about population health.
What we set out to do was we had a sense that we could go on an exploratory trip and the member of the Committee could identify about 40 communities to find geographically, a location in the country where there was some active work going on where that community was trying to improve its health in some manner in partnership with people in the community, whoever was around. Out of those 40 or something communities that were not randomly chosen, were not systematically found — this was just in the lived experience of the Committee members — out of those, when we picked out about a dozen or so to invite on very short notice to come and join us to tell us what they were doing, they all said yes just like that. They wanted to come.
After that event happened — remember, it is an exploratory trip about what is going on — some of the privacy and security and confidentiality issues, I mean, they were on display big time. We immediately decided to drill down into that more. We got some more expert folks, but also other community-based examples. That was the May hearing.
That is really the basis for this report. That is what makes it a 20-30 page report. We need to keep this report inside its skin. It is really a distillation of what we learned through this exploratory trip here. Its purpose is to set up further possibilities for the whole committee, the Quality workgroup, the Standards Committee, everyone, for us to spot where opportunity lies and where we have reason to believe it is not being addressed by someone else or whatever — to envision what could be a new approach to developing population health focused on communities if only they had to data turn into the information into the knowledge and the wisdom that Blackford was talking about this morning. That is as far as we are on this trip.
DR. MAYS: I would suggest that you then call it a commentary and not a report. Usually, the reports, when we put them out, have a certain expectation. A commentary would say you are in the beginning stages, that you are not trying to cover everything, that this is your perspective, as opposed to usually the holding of hearings is then to come up with advice, guidance, procedures, policies.
I guess calling it a report in contrast to reports that are going to come out from RWJ and Commonwealth and other on the topic will be more linked — there is a lot of stuff that I think is out there that you would want to link to and use as a foundation if it is a report.
DR. GREEN: We are perhaps calling it the wrong thing. This was our template. A couple years back in 2009, the Committee put together a primer on health data stewardship. This is what we adopted as our model of what our product was going to be. Again, Susan and Marjorie can help us call it the right thing so that we do not, by naming it, create an expectation of what it is not. That is an excellent point that we do not want to lose sight of.
Again, we are at the bottom of this funnel, not at the top of the funnel. We are at the point where we want to wring out of this year’s explorations something useful that we can build on for further work and continue the exploration in a targeted area.
DR. FRANCIS: Sorry, Larry, observations might be the right word.
MS. GREENBERG: I wouldn’t want to get into semantics here, but I think that if you feel that — I think you have been going in that direction, but we really haven’t discussed it in detail — if you feel that there are some things that you would like to recommend or shine the light on, I think that was the second part of it, what might the Federal government do, then I think it is a little bit more than a commentary.
It is not — I mean, if a comprehensive report, compendium is needed, that is not really the role of the Committee for the most part. It is something that you can say the Department should do this or we see a need for this and we recommend that the Department do it. This committee I do not think has the bandwidth or the really mission to do 200 page reports.
DR. GREEN: To go back to — this is an extremely useful part of the conversation because we want to have it at this meeting and not the November meeting — again, our stated plan was that we would use this report when we distilled this into set of observations or whatever it gets called. We would use it to decide if we wanted to make any recommendation. If we did, we would create a separate, independent document, such as a letter.
We actually said, you know, if we get there and we have spotted something and I think we followed your advice on this, Marjorie — I think what you said was if at that point you have the basis for making a recommendation, well, then you can get together and talk about preparation of a letter of some sort. That is still what we are planning on doing. We do not have to make any recommendations from this work and we do not have to have a letter from this, but we could. We could make recommendations. We could prepare a letter. It depends on where this thing comes in and what it looks like when it arrives.
DR. HORNBROOK: I think the important thing we discovered was that smart people, activists out in the communities are taking the geographic information systems capacities that are now available to anybody because you can go on to Google and just find a place very specifically, that means you can process thousands of places into data files. Then they are looking at published data, area data, retail store locations, restaurant locations, fast food locations, crime statistics, traffic statistics, accident statistics, air pollution statistics, which they can all now key to a location.
The location is their community. They can get very specific or not, depending on what their purpose is and what their use of the data are. It was very rewarding to see people being very creative just by digging into the web and using things that are already there to make a case for the need for change in their local communities.
MS. KANAAN: I am a little confused, I guess, about — or need some clarification about how we talk about the part about suggested federal role. We were beginning to put together, partly with Bruce’s help, some things that looked pretty close to recommendations. Let’s see, what page are they on? We are not calling them recommendations, but I guess I had sort of thought that you might be moving toward something that you would call recommendations. These are important discussions.
I do agree — I mean, part of what I hear Vickie saying and I have felt it, too, the more I have learned about everything else that is out there, all of the other studies and initiatives and activities and the depth of it, that this is — because of our bandwidth, as Marjorie said, this is a modest project. We need to be modest about our place in this bigger environment and the unique contribution of the Committee.
With that understanding, what is the unique contribution of the Committee? Are there things that you have seen that you feel that other people may not have seen, may not be seeing that warrant calling out for government and others? If you look at page 22 and 23, it really sort of — section four follows directly — this is a change in the structure of the paper — follows directly on the commentary about needed an infrastructure to provide support, et cetera, et cetera, with the implication, at least, that the Federal government has a role in creating this infrastructure.
The discussion today, I think, helped to flesh out some of what would be in that infrastructure. Maybe it bears some more discussion today on this question of the level of specificity of the content of section four and what it is you are saying to the Federal government. Do you want to think of these as recommendations? What are they? Do you want to go further along these lines?
Some other important things have come up today like we really do not talk specifically about SES and race/ethnicity data. It is implicit, but it is not explicit.
DR. MAYS: I just want to go back to some of the comments that Bruce made because, again, it is like as NCVHS what we have great influence over is really our data systems, the public health data. It is something where what we can do it unique. That, I think, is where we have the greatest influence.
I think that there are larger projects that are being done by RWJ and California’s California Endowment and all of this other stuff. I think that is not where our strength is. I think if we could go to some of the comments that you made, I think that is where we are unique.
I think the other thing for us to really think about is what is it that we can do again that is influential? Kind of the stuff I said is to think about protection. I think this gets to the kinds of things that Leslie starts to talk about, in terms of privacy and confidentiality and standards and what have you. That is our bread and butter is to talk about the proposal of ways in which people can feel better protected. That is why I am less on the notion of building trust and more on the notion of building protection and accessibility. Theme-wise, to me, that is what is important. That is what is unique. That is what comes back to us that we can actually hold hearings on if needed.
DR. HORNBROOK: I know that we, at CHR, have submitted research proposals to NHLBS looking at cardiac outcomes in our members as a function of the built environment. If you live in a neighborhood with no sidewalks, if you live in a neighborhood with no parks, if you live in a neighborhood with very quick access to fast food, if you live in a neighborhood with no grocery stores, et cetera, et cetera, does that result in poor health? I suspect we will find that it does.
We are beginning to see in both Portland and San Diego, good data systems about the built environment being build up by geographers, who want to provide these as public use data sets. You can do it at low expense and put it together with health data.
One of the questions that immediately comes to mind, of course, is if you are in an unhealthy environment, did you have a choice? In the case of social stratification, the people in unhealthy environments perhaps did not have a choice. That is the only place they can afford to live. Social stratification is part of this whole issue and why we think socioeconomic status is important to put into this whole set of research and public use data, I think.
DR. GREEN: Susan, I also heard you surface a question about environmental scan. Is that resolved in your mind?
MS. GREENBERG: No.
MS. KANAAN: Well, it is very relevant to what we have just been discussing. There is so much out there. We need to show awareness of that. I do not know that we need to be the ones to inform our readers of everything that is going on beyond a few kind of examples. The more I learn about everything that is going on, the more I think that we shouldn’t attempt to presume to do any kind of real environmental scan. I am just curious —
DR. GREEN: Let’s test that. How many of you think that this is the time and place to do an environmental scan about what communities are doing to become learning health systems.
MS. KANAAN: Well, maybe we need to define environmental scan. Excuse me for interrupting you, Larry.
DR. GREEN: No, please do.
MS. KANAAN: I sort of use it for section — I think it is five, which are sort of the drivers and opportunities that are out there in the environment. I mean, finding out what communities are doing globally, I think, is well beyond our reach, but at least sort of what are the major drivers that federal initiatives — you know, the community health data initiative that was mentioned, et cetera, et cetera.
I put some in an outline. I do not think I have that here, but there are so many things — the CTSA stuff, the work on community engagement, this new project, et cetera. There are just so many things we could name. How much of that should we try to mention?
DR. HORNBROOK: Larry, I was thinking this is an inductive process. We are not really doing a deductive scientific report. We are not going out and getting a bunch of data and looking at relationships. We are doing what is feasible by showing some examples of really brilliant, creative community work. I do not think we need to do an environmental scan.
MS. GREENBERG: I guess the whole issue is sort of scope and focus and coming at that from various different ways. We did talk about doing something like a primer. I think if we really were still focused on the primer idea, we might have to do more of an environmental scan. When it came to data stewardship — didn’t you do that report? Yes, Susan. I think we did try to pretty much identify, at least in an annotated bibliography or whatever, what the issues were and then what was being done, what were the activities out there.
I think as we discuss this, this is bigger than that. I am sure we missed some things, but I think we did a pretty good job from a primer point of view on the data stewardship. I don’t think we can do a similar primer on this because it is too big, it sounds like, and there are too many things going on. We just keep peeling the onion.
I think we are sort of backing away from the idea of either a primer or an environmental scan at this point. Maybe we do think that a primer is needed. Maybe that is something you want to recommend for the Department. Or maybe it is something you want to spend more time on over the following year and recommend to the Department.
I kind of like the way Mark has characterized this as kind of shining a light — we have used this terminology, too, throughout this project — on what is going on out there in a compelling way. We all found the hearings compelling and is a reasonably knowledgeable group of people so I think putting that out there would be compelling to other people, as well. Identifying commonalities, as Susan has done, and possible ways — federal roles and some of the things Bruce has suggested, I think that is feasible and then thinking where you want to go from there.
I am kind of backing away from primer, which I think I had put that out originally, not realizing just how much was out there, and environmental scan. That is just my take on this.
MS. KLOSS: I think one of the important sentences for me in this was your writing that at the most fundamental level the time has come to expand the national health information policy discussion to fully recognize communities as significant actors and data users and so forth. That we are giving examples and shining the spotlight in an inspirational way, I think if we go too far into trying to describe the universe, it will be outdated by the time it gets published.
Some of the value of the Health Statistics for the 21st Century and Data Stewardship has been that it has had some shelf life because it stayed high enough level. I think we would be well advised to stay there.
DR. NICHOLS: I would second that and just say, for God’s sake, I didn’t mean to make you write a 300-page report. What I think you have done here is you have assembled incredible examples and everything that we have been talking about adding is really like context, which these communities didn’t need, by the way, to do their thing. In fact, it is like a set of tools for the next set of communities to be inspired by this. Keep it short.
DR. WALKER: This is Jim. Just some ignorant suggestions. I do not suggest that we do this, but it seems to me if we are going to get past inspiration, somebody needs to create a rank ordered, prioritized set of information that would be needed to support communities doing this based on disease prevalence, quality-adjusted life years, potentially favorable and so forth.
Somebody needs to, undoubtedly not use, identify the benefits and risks of providing that information. We have kind of talked about some of the risks. I do not know that anybody has any estimates of what the benefit would be that we might even hold ourselves accountable to as we go down this road.
Somebody, not us, needs to figure out what the current state of information availability is. Can’t do that until you have decided what would be needed and then do a gap analysis. Then say who is going to be responsible for providing the rest of the information, ideally in some really cheap, look it up on the internet, but maybe increasingly useable tool that sort of anticipate the questions that someone trying to improve a community’s health might be asking so that the data is sort of pre-assembled in some measure at least to answer some of those basic questions. Then someone has to test it and make sure it is actually safe and useable and cost-effective. I think we could call for that, even though there is probably not much that we can do.
DR. GREEN: All right, you have got to write that down and email it to Susan.
MS. KANAAN: I think I got most of it. Thank you. Very helpful comments.
DR. GREEN: I want to thank you guys for a lovely meeting. I am about the leave. Sally is going to take over, but I am going to listen to Blackford before I go.
DR. MIDDLETON: Pressure’s on. In many ways, I think it is a terrific start, actually, and it represents a lot of the learnings of the NCVHS being put together in a very useful way for an extraordinarily exciting new opportunity, the whole community health data initiative, et cetera. I am struck, though, by a couple of parallels that are crystal clear in my mind to what has happened every time we have tried to aggregate data from one microcosm to a broader macrocosm, whether it is from hospital laboratory ancillary department to hospital information system, clinic to IDN, IDN to RIO, RIO to NHIN, et cetera.
The same issues arise every time. We should enumerate these and help the community health data initiative folks get their data in a way that makes sense and allows this aggregation to occur in a fast manner. I have a prototypical list or a proposed list around standard specification, terminology and modeling and metadata, around a messaging framework, whether it is NHIN, direct connect, blue button, whatever you want to do, around data acquisition methodology, considering that so you know how to capture the source and quality of the data, around aggregation, itself.
What is the model of the aggregate dataset because it is not going to be the same as the source dataset and how do we then deliver composite query to the aggregate dataset? What does the presentational area look like for the user answering those prototypical queries? What are the analytics that actually apply to composite data that are distinct? How do we address security — I will never forget, Leslie — security, privacy, and the issues that pertain to the use of these in the aggregate? Then what are the measures? What are the quality measures that actually make sense, are actionable, and useful to the community, and how do we learn? How do we do all of that stack and then, at the same time, provide the feedback mechanism that allows the entire stack to be informed by how well we do it? Does that make sense?
DR. COHEN: I think that is a perfect, in between what Larry said and what Blackford said, that is a perfect segue into what happens after this report. This report lays out essentially the groundwork. Jim, I disagree with you only to the extent that I think we can do it. We can’t do it for November, but there is no reason why the national committee cannot be involved in not only raising the issues that Blackford and you did about what those indicators are and how to use the data, but —
DR. WALKER: I think we can raise them; I don’t think we can execute them.
DR. COHEN: I don’t think we can execute them in November, but I think we are in as good a position as others to think about marrying our knowledge of data development standards and dissemination with what we know about the actual measures, themselves. I think it might be a nice projected task or set of projects for the Population Committee to work on in the future.
DR. HORNBROOK: State health departments are, of course, empowered to deal with infectious diseases, but inside Oregon I have seen our health department be very creative in applying that regulatory power. When there is a community concern about an outbreak and these outbreaks are not infectious, but they are a single source like power lines, electromagnetic forces, or industrial smokestacks and air pollution in the neighborhood, they will come to Kaiser, the state health department, and ask us to run our diagnostic data in these particular zip codes, which they have defined, relative to other zip codes as a control group to see if there is any tentative evidence of some health risks associated with these environmental things because there is a public outcry going on and the state wants to be responsive.
There is an interesting creativity that state health departments sometimes use to get into the big carriers — Blue Cross Blue Shield, Legacy Providence, and Kaiser — for intelligence about local health problems. We didn’t ask that, but it is a kind of another way of being creative and using existing health data.
DR. TANG: I think Blackford sort of called the question. What is the problem to solve for doing something about the information we heard? We can either write about a bunch of lampposts where people can look for their keys or we can build an interstate, a data interstate, where people can find the keys to data and information. I think we just sort of have to decide maybe today, before November, which one we are going to do because depending on the decision, we will have to spend some time getting from here to there.
We have been inspired and uncovered a number of useful experiences, but Blackford’s question is they just can’t go anywhere or even to the next neighborhood unless somebody — and this somebody is really going to be a Federal somebody because they own all of the neighborhoods — helps everybody do this thing. It either stops at the inspirational level and the report of what we did so people can shine the light or we try to do something that is NCVHS’s light. We should end this discussion with that decision it seems to me.
MS. MILAM: I’ll draw you back to the report. On pages 22 and 23, we have a whole bunch of possible next steps, envisioning the federal role. Some of these steps include some of this discussion. So are we proposing — in terms of the report, let’s sort of segment the discussion of next steps for the Committee, but just sort of focus on the report. Are we thinking that we need to narrow this? Do we like what we have for the federal role? Is that the feedback you are needing, Susan?
MS. KANAAN: I think some of it is — I am satisfied with, unless anybody has anything they want to say about this, to kind of let us sit with this question of what exactly we want to do and what we want to say about the federal role. Do we want to think of it as recommendations?
It seems to me that Paul has raised a pretty fundamental question or Paul and Blackford. It sounds to me as though we are moving toward kind of looking at the overarching questions, not just being inspirational. Hopefully, we are being inspirational, but also looking at this question of an infrastructure and of empowering more of the kind of work that we saw. There are implications there for the federal role, certainly.
For now, I think we kind of fudge on the question of whether these are recommendations or something else because we just talk about it as a federal role or potential federal role. Maybe that is where we should leave it for now. By the way, the last half hour or so of discussion has been extremely helpful, I think, in knowing what we need to do with this report. Paul, do you feel as though your question warrants an answer? I wanted to say church say amen to what you said.
DR. TANG: I think we need an answer because that will help us at least be productive between now and November. If I were to look at — where did that definition of community come up?
MS. KANAAN: I did it.
DR. TANG: That is really — what a lovely definition. Even that, by itself, is a contribution actually because it describes something that can cause action to happen. Then we go through the what were the people’s challenges, et cetera. Then you ended up on page 22 with a set of bullets that I think distilled what is the definition of the infrastructure we are trying to create. If we could just lump them into three kinds of things — it could be standards, it could be reusability, it could be tools.
Who are the actors who have to go help make that happen? These are people that — you can do a lot in your community to raise its health. Then let’s figure out what has to be done and portion out who are the players. As NCVHS, we are looking at the federal role, but just not a whole list of things that anybody could do because we don’t have the money or the bandwidth.
If we could figure out what things — some of these things, let’s say tools, that is, in a sense, where Todd is trying to unleash the private sector. You could if you had standards and you had the right to. There are some things we could even define and put out there for the private sector. That can even help Todd actually. I think just making it available — that is a really big step that we haven’t had before and it not quite enough. What is the next step — I am not quite sure that is completely mapped out and maybe this is a group that can add to that mapping out.
MS. KANAAN: With the NHII report, the information for health, there was a series of reports that preceded it that kind of got more and more concrete and more and more developed. One of the things that we might think about is thinking of this at least or talking about it as a preliminary report.
Another alternative, I suppose, although Marjorie might roll her eyes at this idea, is that we rethink our November deadline. To do the kind of thought work — it seems as though there is some exciting potential here. There is a body of work identified that needs to happen and that arguably the Committee could do, but not — we just haven’t had the opportunity. Just this room arrangement, not to mention the limited time that we have had just has not permitted that level of discussion among all of you experts, who bring all these different excellent perspectives to bear. Maybe you are partly just identifying work to be done that includes work you intend to do, yourselves.
DR. NICHOLS: Could I just ask have we read the specific reports of the workshop of the individual communities? Did I miss that memo? I remember getting a summary, but is that part written up? Personally, to answer Paul’s question, I think I could do a much better job with it if I could read what the communities have actually done. That might be a way to help us distinguish between what the report should do and what the Committee should do after the report is digested. That is my free advice.
MS. KANAAN: There are write-ups of the first 11 communities.
DR. NICHOLS: They were at the June meeting?
MS. KANAAN: No, the February meeting.
DR. NICHOLS: Ah, that is why I am feeling appropriately naked.
MS. KANAAN: And incidentally, we did call them workshops, rather than hearings because they were sort of anecdotal, admittedly. Those are available. I would be glad to send them to you.
DR. NICHOLS: For me, it would be very helpful to have that.
MS. GREENBERG: You are talking about beyond what is on the website? There is a fairly robust set of summary of the February workshop on our website. You have more detailed write-ups.
MS. KANAAN: And most of that is incorporated in this latest report. The sketches of the communities are all appended to the report that you received.
MS. GREENEBERG: I would still commend to you the summary.
DR. NICHOLS: But I want to read the details. What I believe to answer Paul’s question is if I can see exactly where the communities are going, again, on their own, then I think we will have a better sense of are the tools that they would have needed to be helpful already existing in other places or do they need to be created? That seems to me to say a lot about what the report should finish with and what we would recommend the Committee pursue afterwards.
Until I have in my head, which I do not at this moment, exactly what these communities are actually interested in on their own without eggheads being there to push them, I think that is precisely the raw ground we need to plow before we make a decision here.
MS. GREENBERG: In addition to — we brought these people in, but Susan actually had a conversation with each one of them or in some cases more than one conversation. I shied away from saying she interviewed them.
DR. NICHOLS: You extracted from them what — yes, okay.
MS. GREENBERG: For obvious reasons. Yes. It is quite rich information from those communities.
MS. KANAAN: There are about 60 pages of description there that I can send to you.
MS. GREENBERG: I would like to segue to the next topic, but in a way that relates very much — well, it does relate very much to this report. I was struck earlier in the day — I don’t remember whether it was Mark or Bruce or somebody, maybe it was Blackford. Whoever it was, you will know. You can tell — who commented about just at this time when there are all of these opportunities with HIT, et cetera, that state and local public health departments are absolutely bleeding and cannot even afford a full-time person — was that you, Mark? — to work on public statistics.
Susan and I are sort of the holders of the history of this committee. We think we have been with it since 1949 even though we haven’t. It just feels that way. I am sure Susan has been with it as long as I have, though she actually hasn’t, but she knows more about it than I do. I was really glad, Susan, when you dug out or brought back the work that George Van Amburg — some of you know that name. He was on the Committee. He was the Director of a Michigan Center for Health Statistics and a former President of NAPHSIS, which then was AVRHS or something like that, but the group of vital records and state centers for health statistics.
I do think this is something that should be noted in this report. I really commend you all — it is on the website, isn’t it?
MS. KANAAN: No. It is before the era of digitization.
MS. GREENBERG: Oh, but I can send it — we can scan it or something.
MS. KANAAN: I found it in my files.
MS. GREENBERG: Yes. I have it. People can get a little carried away thinking about the Todd Parks-palooza, which I am a great fan of, but all the stuff with Health Information Exchange and everything and forget that on the ground where people are trying to deal with population health and public health and whether to be emergencies or just quality of life and everything else, the resources are scarcer than hens teeth. I do think that is something that the Committee — it is certainly within your purview to comment on that.
This leads me to the National Association of Health Data Organization’s annual meeting, which is taking place on November 15th and 16th. This committee is meeting November 16th and 17th. Do I have those dates right? I think so. So the NAHDO meeting starts on a Tuesday?
DR. GREEN: Well, there is a one day workshop on all payers on Monday.
MS. GREENBERG: Okay. They used to always meet — I do not know how many of you are familiar with NAHDO, but Denise Love is the Executive Director. She and her colleagues actually presented at the June NCVHS meeting on the all payer claims database system.
They used to always — I actually had the privilege of being involved with the creation of NAHDO because my boss at the time was invited to a meeting by the Washington Business Group on Health to talk about the need for an organization of state health data organizations and I tagged along. Anyway, I have been involved with this from its inception, I guess, in the 80’s.
They used to always meet in Washington. Over the last number of years, they have actually been meeting other places, not in Washington, DC or the metropolitan area. They are meeting in, I think, Crystal City — no, Alexandria, the 15th and the 16th.
They would like to host a plenary session on that first day, which is the day before that full committee meeting, featuring the National Committee and the work that the Committee is doing related to public health data or population health data — everything we have been talking about. Particularly, they also are very interested in the issues related to privacy, confidentiality, and security data access. Denise testified at the May workshop on this community health data initiative of the Committee and raised a number of challenges to the Committee.
I have been communicating with a few of you about this and generally we have agreed to this — the idea would be — I had one preliminary conversation with them, you know, when can we have this next conference call. I just got one about 15 minutes ago, which is why I really need to discuss this with you all. The idea would be that the Committee would have 45-55 minutes to really do whatever you want in this space and then they would have a 15 minute reactor panel of state people, which I think would be quite useful to the Committee, and then open discussion.
I think it is a nice opportunity. Since it is right the day before the full committee meeting, I am kind of hoping that the Committee can do that. I guess, Sally, you have been already working with NAHDO on some issues related to data release policies for public use data tapes.
MS. MILAM: For UV data, hospital UV data.
MS. GREENBERG: I think that — even though it has not really been a National Committee activity, I think that could be woven in.
MS. MILAM: We could, but there is a separate panel on that.
MS. GREENBERG: There is a separate panel on that? Okay, then we do not have to worry about that. My thinking was that this report — by the way, as for my rolling my eyes, which I tend to do a lot, but I am flexible. I do not think this report has to be done in November. My esteemed Chair might have a different view of that.
I don’t think it should be any later than March. I think we are meeting March 1st and 2nd. If there was a compelling reason why this report would be better to bring to the full committee for approval in March then I think that is negotiable. It did seem like an opportunity to present where you are with this report, particularly some of your ideas about federal role, get feedback, and state role.
We focus primarily in this on communities, but the communities, obviously — like Sonoma, they draw a lot on the California Health Interview Survey. They are dependent upon state activities, even though that is a university run survey. The state is involved with that. I think this could be a good opportunity to have that kind of dialogue. It could lead to your thinking of other things you want to do in this space.
Although I have tentatively agreed to this based on some preliminary emails, I need to know that you really are willing to do this and then to know who is going to do it. Now, Susan, I am thinking you might be part of it. You are coming in for the November meeting. At least you might have a role of helping us prepare for this. It could be, depending upon what members are available — Leslie is not available?
DR. FRANCIS: That is correct.
MS. GREENBERG: Although you are willing to work with us on it, right?
DR. FRANCIS: Oh, yes, it is just that I have already cancelled lots of classes to come to this one and I will be to the other one and I just cannot cancel another day.
MS. GREENBERG: I just asked Larry. He said he cannot come in a day early for that. You thought maybe you could, which would be great as the chair. I think it would be an opportunity to talk about data stewardship, talk about the 21st century influences on health. You can tie it all in. It all fits with this report.
SPEAKER: Is Sally going to be there?
MS. GREENBERG: Sally, I hope, is available, right? If Sally is, that is great. We have three co-chairs so, Sally, I am really hoping you can do it and you felt you could. I think we may need more than one person.
DR. SUAREZ: I want to just ask — I wonder if the opportunity is to present larger perspective from NCVHS and not specifically focus this on the CHIP. For example, the Standards Committee, which has some perspective, of course, on this and has other perspectives that are relative and of interest to the states and to NAHDO could be also there. The panel from NCVHS could be sort of a perspective from NCVHS on state-related data issues, including privacy, quality, populations, and standards.
MS. GREENBERG: I think that is possible. I was going to say NAHDO has a long history of interest in quality data — data for quality. I do not know whether Blackford or Paul may be available to be on this panel. We do not want too many people, but we have nearly an hour.
I need guidance from you all. I agree with you. I do not think it should just be on this Community Health Data Report, but I do think that maybe should be part of it. Then I need a few people to work with me to work with NAHDO on organizing this.
MS. MILAM: I will help organize.
MS. GREENBERG: Sallie that is great. I was counting on you.
DR. CARR: The questions we are answering are who is going — so one, two, three — and what about Blackford or Paul?
DR. TANG: I have a Board presentation on the 16th.
MS. GREENBERG: So you are actually not going to be at the full committee meeting? Okay.
DR. MIDDLETON: What is the date?
MS. GREENBERG: The date is — what, the full committee is meeting the 16th and the 17th. This is the 15th of November.
DR. SYUAREZ: The HIT Standards Committee meeting is on the 16th.
MS.GREENBERG: A busy time. Everybody is trying to have their meeting before Thanksgiving, I guess.
DR. MIDDLETON: It is Tuesday, the 15th? That is a possibility.
DR. CARR: Then the next question is what are you talking about?
MS. GREENBERG: What are you talking about, right? It should be not just a show and tell. I think it should be crafted in a way that does kind of shine a light on what the Committee is doing, but also something that it would be useful to get feedback from the state reactor panel.
DR. FRANCIS: One of the possible ways to think about this was that we were actually given some questions from NAHDO.
MS. GREENBERG: At the May hearing?
DR. FRANCIS: Yes. There are some questions that Denise really thought this committee could be helpful with. I pulled out sort of four general versions of them in that “what are some possible next steps” memo. I didn’t have and I could not pull her testimony with the actual questions. Maybe it was just that I wasn’t finding it, but you could go back to that.
Remember, she actually listed out about seven or eight areas of difficulties that state health data authorities are having and that help at the federal level. One of the things that we might do as a panel is we might look at what help is there already that we know that could be helpful with and next steps.
MS. GREENBERG: I think that is a good idea, but I think that those were principally related to issues like release of data and access to data. I am not sure that we want the session to focus exclusively on that. That could be part of it. I do not know. Frankly, it is your session. I think if we have several committee members there — that is the first prerequisite and it sounds like we will and can — then I think they will be happy however you want to craft it.
DR. FRANCIS: I think, Marjorie, you will be surprised when you look at those questions you will actually find that they are a great springboard for some of the different kinds of different expertise that the Committee has. I was just saying it is a nice little —
MS. GREENBERG: You are talking about in May?
DR. FRANCIS: Yes, you are talking about in May.
MS. GREENBERG: Okay, not when she presented on the all payer claims database, but when she testified in May at the second workshop.
DR. FRANCIS: That’s correct. But I didn’t find a hot button to written testimony, although I believe she did have prepared written testimony.
MS. GREENBERG: We also have the transcript. Susan, would it be easy for you to dig out those questions?
MS. KANAAN: I summarized them.
MS. GREENBERG: Maybe you summarized them anyway.
MS. KANAAN: There is a kind of a summary right in this CHIP report. Yes, I can find those.
DR. SUAREZ: Those were more tactical and practical specific and technical in many respects. The real question is what is the larger context of this particular panel, whether it is to focus on state data issues, community health data, or population health and privacy and standards and quality. Those four and if we have one person from each of the four subcommittee, we can provide a unified perspective towards that question of state data issues.
They are a lot of data organizations and state representatives that are going to be in the state reactors panel so we will deal with that. My thought when I was thinking about the NAHDO conference — I am going to be there on the all payers claims on the 15th — but was doing that, focusing on what are the state data issues and some of the questions that Denise posted on the May testimony provide those kind of issues.
I am of the perspective of what are the roles and what are the current focus of NCVHS on those issues. In the reactors panel, there are state representatives that could actually give us some more data and some more input on what other areas we should be thinking of.
MS. GREENBERG: I like the idea of making it fairly broad. I think this is a constituency of the set of stakeholders for the Committee that until we started this community health data initiative and we had the all payer claims database, we had not been engaged with as much recently.
I will give you a very quick example and it relates to SES and other issues for population health that the Committee might want to become engaged in or the states might want to approach you about. NAHDO and the public Health Data Standards Consortium with support of NIOSH and some other people made a proposal to the National Uniform Billing Committee, who maintains the uniform bill for hospital, for in-patient, that the occupation in industry — the standard codes for occupation in industry be accepted as a standard code set or recognized as a standard code set for potential collection on the UB, if a state had agreement to collect that information.
They are actually already in the process of getting it approved as an external code set by X12. Well, predictably, although you can give all sorts of really good public health reasons why occupation and industry are very useful information that related to SES, relate to exposures, relate to everything and we have been attempting, at least, to collect it on death certificates for a very long time, the hospitals went bonkers — well, you know NUBC is made up of part hospital, part providers, part payers, and public health, we are represented on it, too. And, you know, oh my God, how can this be asked in the registration process? They really, really pushed back. They had a lot of — they were very concerned about burden. They were very concerned about cost, et cetera.
It kind of reminds me of one of the things that you said, Bruce, about how do you best get this information? They used to feel this way about race/ethnicity, too, but now it is sort of required. I said to them — and then the people were very discouraged — well, you might want to engage the Population Health Subcommittee of the National Committee about this because this is very important information for public health, but also it is actually information that probably physicians do try to obtain in a broader health history or whatever and it is very relevant. There are automated systems that are coming up that are being developed that could code free text and all of that.
I just give that as an example of something that is seemed to me might be of interest to the Population Health Subcommittee. I think making this broader so that you really do — they start seeing the Committee as a place where they might want to bring issues or engage on issues is a good thing. Certainly, the health insurance industry now sees this and all of those people affected by HIPAA; they see this committee as being very critical. Frankly, the other two HIT committees are not really focusing on public health in a substantial way. It is part of it, but it is not their main focus. They have meaningful use. You have all of that. Enough said.
What I would suggest is — I do not hear anyone really disagreeing — if we could try to have a teleconference with Sally, Walter — I do defer to Walter because he will be there anyway, but I would love to have you participate in the call at least because I know you would have a lot to contribute, but at a minimum Sally, Walter, hopefully Justine, Leslie, and Blackford. I may not get you all on the call, but at least as many as possible, then I think we could figure out how you want to do it. Would that be okay?
MS. MILAM: Sounds good.
MS. GREENBERG: And I am going to push for Sally’s availability as my first priority because you are on at least two of the committees, but also because you and I have been talking about this from the beginning. I would love to have all of you involved. I guess we wouldn’t have anyone from privacy at the actual meeting.
All of the members of the National Committee, if you happen to be in town, are invited by NAHDO, I think, to come. Did you get an email from them? To come to the meeting that day, you do not have to pay registration, and to come to the lunch. You can come in that morning because the panel is at 11 o’clock. I mean, truth in advertising, I am getting this award at the luncheon. That is where they came up with this whole idea, but if it is an opportunity to focus on the Committee I love it. You are all invited to the luncheon, as well.
DR. SUAREZ: That reminded me of the WEDI award.
MS. GREENBERG: Yes. We have to figure out who is going to go to that.
DR. SUAREZ: I am going.
MS. GREENBERG: Lorraine is getting an award, but we need someone to accept the award on behalf of the Committee. You cannot be there, but Walter will be there. Anyone else who is going to be there? Any other members who are going to be there?
DR. SUAREZ: I am going to be there.
MS. GREENBERG: It looks like Walter is our representative, which is fine.
MS. MILAM: I am noticing we are getting close to 5:30. Can we agree to extend by ten minutes? Next steps, we have some items that we need to discuss and really wrap up the report or commentary or whatever it is we are calling it now. Paul had made some suggestions on how to really crystallize action steps. Susan has said she is fine with letting it rest. How do we want to get feedback so that we know whether we are having something to present in November or whether it is going to take more time? What are the next steps for the report?
DR. WALKER: I would suggest we do a report of observations or whatever it is for November and close that and say and we will have some recommendations or whatever we want to say we are going to have in the future and just completely decouple them. The one is done and we can take the time we need on the other.
DR. CARR: I would second that because we never know what else is going to be on our plate in the next month or two. As we have seen, we can quickly get behind the eight ball. I agree we should have something deliverable by November.
MS. GREENBERG: I don’t think that precludes, maybe, at least suggesting some areas of federal role or whatever. I mean you said decoupling them, but only say as much as you are prepared to say.
DR. WALKER: I don’t think we can have a deliverable — I think to have the first deliverable done November would be pretty much gold star work. The second theme, it seems to me there was a lot more conceptual question about what it would be and what shape it would take. I think it is worth taking Blackford’s proposal and really thinking about it some. I don’t see how we could turn that into something for November.
MS. MILAM: So some high level issue identification and possible roles and work further on recommendations as a next step. Susan, when do you think we should look for a draft to react to? Are you looking for an interim review before the meeting in November?
MS. KANAAN: Absolutely. We will probably go through a couple of drafts and then something will have to go through — once two subcommittees are satisfied with the draft, it will go to the Executive Subcommittee. Only then will it be ready to go forward to the full committee. I am not prepared to give you a date for the next draft at the moment, but maybe three to four weeks, I would say, I will have another draft for you.
I am going to try to pull in as much of the very rich content from today as possible. I think some of it — you know the section six that is called questions for the future consideration or — I can’t remember what I called it — knowledge gaps and what else do we need to know, some of the pointing to future work can go in that section. We may want to rename it for future consideration or something like that, but we could definitely develop that section. That is where Blackford has already given me some language for something on knowledge management.
I do want to urge you, please, to send me — there are a lot of questions, some very specific, some more general questions posed in this draft. Please, send me your individual comments, either in the manuscript or by email. If there is new language that you would like to suggest for any of the sections based on today’s discussion or whatever, I would really welcome that. I will be initiating contact with some of you, who have offered to give me some more information.
MS. GREENBERG: Just working backwards here with the meeting being already the 16th and 17th of November, I would think this would need to go to the Executive Subcommittee no later than October 31st, that first week in November. We send out the agenda books the following week.
DR. SUAREZ: Coincidentally, the HIPAA Report is going to come to the Executive Committee so we might think about beginning to schedule a formal Executive Committee meeting at which we will hear both this report and the HIPAA report that will then be brought to the full committee.
MS. MILAM: So we will probably need a Populations Health, maybe joint Privacy conference call mid-October. We need to wrap up this discussion to get to some other areas that we have heard identified. Mark, did you have something?
DR. HORNBROOK: Just a question. Susan, do you like track changes versions?
MS. KANAAN: I do.
MS. MILAM: Seth, did you have something?
DR. FOLDY: Sorry, I was absent for most of the discussion about the report. There was one question I had about whether it was in the report and that is we are getting pushback to de-granularize data continuously as people are able to use a variety of datasets to re-identify individuals with unusual conditions in small spaces. I do not know if that emerged at all during the discussions.
MS. MILAM: It did. The second workshop was focused on that. We had several experts who testified and the report gets into that a little bit.
DR. FOLDY: Then perhaps what I will do, if I am assured that I have Susan’s email — I actually raised the issue at a GIS conference last week and said help us out here. I got a good number of citations on the topic. If you would like, I will send those out.
MS. MILAM: Great. What I would like to do now is I took some notes on other issues or ideas that I heard people propose earlier today. I would like to just start some discussion around them, given that we know we need to have this report ready for November. That is our first chunk of work. We heard a possible workshop around SES data, possible work around data standards and health indicators, the issue of scarce public health resources. Are there any other areas of exploration or priorities we want to put on the table and then what do we pick?
DR. MAYS: I thought there were two others, one on the social determinants and then the other on LGB — I don’t know if the T was in it or not. Well, HHS already did a listening session for the T. I am not sure — Jim was saying he wants us to be ahead a little bit so I just don’t know. Let’s just say LGB and the T then.
DR. HORNBROOK: That raises a committee for us to do as a general committee a discussion at some point and that is the sex/gender as a variable. Do we want to say anything about the fact that it is more than just M or F? It is biology. It is genetics. It is a role. What are you asking when you ask for it? Should we teach users that when they are asking that question they really ought to specify to the respondent what they are really asking the same way with race and ethnicity? You would assume that everybody knows what they are asking, but if you do not verify, you cannot have valid data.
DR. SUAREZ: One other area that is touched very, very briefly in the report, but I think is critical — there are a number of groups working on it and it actually links back to and here is a way to connect with population health and the Standards Subcommittee — is the whole area of the public health information infrastructure, itself, and the challenges around that.
If we are to really look at all of these opportunities around community health initiatives, we need to look at the public health information infrastructure and the challenges that exist around that and some of the opportunities that are there that some other groups are working on.
MS. MILAM: Let me propose something since we are so short on time. Would it make sense for our call in October to focus our discussion on the report along with next steps so that we can tee up deeper discussion in person in November around where we will go next? It may be one of those areas that Paul and Blackford are talking about that encompass some of these other issues. Does that make sense?
DR. FOLDY: Great idea. Again, I apologize; I was called out on another meeting. We are now talking about the Population Health Committee?
MS. MILAM: Yes.
DR FOLDY: I just want to bring to your attention that we feel — who is we — the public health community at large feels that — I have started to get a lot of requests saying we need to establish public health FACA’s, public health informatics FACAs. My reaction has been largely please do not do that to me. It seems to me there are plenty of organizations existing that we do not have to be able to leverage. I hate to say it, but I was imagining leveraging the subcommittee as one of them.
That being said, I am new enough to our process that I do not know to what extent subcommittees, for example, form workgroups with non-committee members and rules like that. I would like to talk to the Committee leadership tonight to get more insight into doing that. The points that Walter is making, as Walter knows, a crying need for architecture, data models, and other things is really starting to overwhelm us.
MS. MILAM: Let me ask you all as a group, we have talked about meaningful use, does everybody feel like they have a pretty good grounding in the criteria as it relates to public health and what is available? Do we need a briefing by ONC or somebody about that or do we feel very much informed on that already?
DR. COHEN: My response would be it is pretty clear around clinical data as it impacts on public health, but much less clear on population health data and surveillance data. Meaningful use in the sense of the way I use it in the State Health Department, in terms of surveillance systems for cancer registry data, et cetera, is certainly not clear.
DR. SUAREZ: Just one point there. Meaningful use is the large meaningful use, of course, for electronic health records and clinical care. The vast majority of things relate to delivering care to patients individually, I guess. There is certainly the opportunity to look at what is the meaningful use of electronic health records for public health.
I think, of course, right now meaningful use covers primarily three specific measures that deal with electronic health record exchanges to public health — immunizations and lab reporting and syndromics reporting. There is this larger question of what is the really comprehensive view of electronic health record exchanges with public health. That is something that certainly is of significant interest, I think.
There are a lot of other things inside meaningful use — data collected by the electronic health record that affects or impacts or relates to public health like obesity, tobacco prevention, and things like that. Those are sort of buried inside the structure of the electronic health records and not necessarily highlighted as true opportunities for population health and exchanges between electronic health records and public health. I think there is this larger opportunity. Perhaps our Population Health Subcommittee could provide some insights on that.
DR. COHEN: One other quick, quick point about that –- sorry to interrupt. The vital statistics community is very interested and concerned about the impact of meaningful use with respect to vital records. That is a huge unresolved issue about what direction information flows and the impact. It is certainly part of our ongoing discussions at NAPHSIS and Allstate Registry about the impact of meaningful use on vitals and the impact of vitals on meaningful use. I think that is a direct connection that is certainly in the purview of this committee.
DR. MIDDLOETON: One of the things, Sally, and this is really for the whole committee at large, it sort of struck me in the population discussion, but we have the same issues cross-cutting, whether it is quality or privacy or security and standards, is — and this may be based partly upon the provocative luncheon I had with Larry and Matt and Mark, but maybe now is the time to call out health care information management and our work as part of critical information infrastructure.
I understand and I do not know much about it, but there are certain designations from Congress and the Department of Commerce and others about pieces of the infrastructure, which are viewed as critical. If we were to elevate the information management exchange and use of healthcare data to this level of critical information infrastructure, it might get the attention and a little more sustenance for the long run. I would like to explore that.
DR. MAYS: When Jim was talking one of the things he said was that, in terms of our being able to try and stay at the same level, the 40302, which is — you know he gave the whole list of things they are going to be dealing with — it is moving fairly quickly. I know when we wanted to do the race thing we did not have enough time. It may be that it would be useful to find out some timeline from him so that we can adjust things so that we can actually be useful to him.
MS. MILAM: Marjorie, would you be able to help us with that? Jim’s timeframe for —
DR. MAYS: For the different issues. You know, the timeframes since it is like we missed race and some of the other things to have a sense of when it is coming so we can work better with him.
MS. GREENBERG: Yes, sure.
DR. MAYS: The other thing that came up was whether or not we wanted to write some guidance. I do not know if it is us or just say it is important about how to collect this data. They have already done the race and ethnicity, but we need to either come up with here is good practices or some kind of actual guidance about how to collect the data.
MS. GREENBERG: I was just thinking when Bruce was talking this morning about ways and tutorials and education, it is like there is nothing new under the sun in a way, but we know that these are still troubling areas. Raj brought them to our attention in his own experience.
I remember a number of years ago we had an excellent presentation by people from Minnesota — well before you were on the Committee, probably when you were still in Minnesota — about some of the educational activities that they had developed for gathering self-identified race/ethnicity and improving the comfort level of the people who had to ask for it and explaining to those who responded what some of the reasons were. I mean, I remember being very impressed by that. Clearly, we have not solved that problem yet, but there are people out there and you have done things in Massachusetts. I think we should address some of those, push some of that out.
MS. MILAM: I am thinking we are short on time and I am wondering about a possible next step. Do we have any Population Health staff here at this meeting right now?
MS. GREENBERG: Do we have any Population Health staff here? Well, Debbie has always been the glue that has kept this group together. Unfortunately, Nancy Breen, who stepped up to the plate to be the lead staff on community health data was then told by her boss she had to go to another meeting today. That is why she is not here. Just tell us what you need and we will do it.
MS. MILAM: Let me throw this out there and, Debbie, you can tell me if this wouldn’t work. What I am thinking is if we could get Blackford and Paul, your information or your ideas, and if everybody else who has identified possible areas for next steps, if they could email them to Debbie then we could circulate that before our call. That would be really helpful, I think, for the conversation.
If we could find out from Jim, once we get that list if he can react to any of it to give us a sense of timing, we can help structure where we go next and structure our recommendations for the report so we will be ready in November to really figure out what work are we going to do, who is going to do it, when do we expect to deliver it, and get busy. Does that sound like a good approach to everyone? As I look around the table, I have heard a lot from Vickie and I have heard from Paul and Blackford and Mark and Bruce. Please, put your ideas in writing and send them on to Debbie. That would be great.
MS. GREENBERG: I should point out, by the way, of course, we have Susan here as your consultant, as well. You are talking beyond the Community Health Data Report.
MS. MILAM: Beyond, yes. I think the Community Health Data Report is part of it, but in the broader context of what we do beyond that.
MS. GREENBERG: Okay. Sure. Is that okay, Debbie?
MS. JACKSON: Sure. That works.
MS. MILAM: Thank you, Debbie. I appreciate it. If there isn’t anything else, let’s adjourn and see everybody later.
(Whereupon, the meeting adjourned at 5:45 PM.)