[This Transcript is Unedited]
DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
SUBCOMMITTEE ON POPULATIONS
November 28, 2007
Hilton Embassy Row Hotel
2015 Massachusetts Avenue, NW
CASET Associates, Ltd.
10201 Lee Highway
Fairfax, Virginia 22030
P R O C E E D I N G S
DR. STEINWACHS: Populations Subcommittee of NCVHS, and let’s go around and do introductions again so that everyone knows who’s here. I’m Don Steinwachs, I have the pleasure of chairing the Populations Subcommittee, from Johns Hopkins University. Bill?
DR. SCANLON: Bill Scanlon, Health Policy R&D, member of the Committee.
DR. GREEN: I am Larry Green, University of Colorado, member of the Committee.
MS. GRANTHON: Miryam Granthon, Office of Minority Health and staff to the Populations Subcommittee.
DR. STEURELE: Hi, I’m Gene Steurele from the Urban Institute.
MS. GREENBERG: I’m Marjorie Greenberg, National Center for Health Statistics, CDC, Secretary for the Committee
DR. LAND: Garland Land, NAPHSIS, member of the Committee.
MS. JACKSON: Debbie Jackson National Center for Health Statistics, CDC.
MS. WILLIAMSON: Michelle Williamson, National Center for Health Statistics.
DR. STEINWACHS: Great to have you. Okay, you should have in front of you an agenda note that we have not accommodated time changes on the agenda, but that’s okay. You should have a summary of the straw poling that was done and two other documents that were attached to that. One was an effort by myself to take what we had discussed on the telephone call and the prior meeting about each of these areas that we emphasized and put it down. The other is a copy that Larry shared with us of the statements on the medical home joint principles from the four professional organizations which was to amplify that.
It seems to me the task for today is to try and layout what we’re going to do over the next year to two years. There are several pieces to it that I am trying to understand.
One, is that we are trying to do some things jointly with the BSC, the Board of Scientific Advisors, and before this meeting, Virginia Kane, who could not be here today, but Jennifer Madans is supposed to come in on the phone, I’m hopeful. There may be some timing issues in doing those things jointly, so I don’t know, Bill may be aware of them. I thought maybe we could get some discussion about if we do something jointly together, what would be the timing? How would we proceed because it would be a new experience for us in the sense that a joint undertaking — who joined us?
MS. LUCAS: This is Jackie Lucas.
DR. STEINWACHS: Jackie, welcome. We’re just starting the meeting and talking about the goals for this morning. The other is to try and get a sense of where we are in current work, how much further we want to go, and then maybe decision points, not to try and draw closure but at least get a sense of where we are, and then new undertakings.
The three that are listed here in terms of fresh and new undertakings, or at least the ones we’ve discussed so far — that doesn’t mean it’s the end of it, but it certainly means that we ought to be trying to figure out are we going to pursue them and then maybe what kind of priority or timeframe.
Just one last comment and then I’ll open up for further discussion to everyone. Marjorie and I were talking yesterday about the one that talks about the Update of Vision for Statistics in the 21st Century and trying to figure out how could that be — I talked about an umbrella, Marjorie I think was talking more about integration of how could updating that really draw on what we’ve been doing in data linkages? How could it draw on what we’ve been doing in preparedness? How could it draw on the medical home and so that it doesn’t appear, it does not functionally become something that’s totally separate from what we are doing or have been doing.
I don’t know if we’ll resolve that today, but Marjorie agreed that after this meeting in the next few days that we try and talk some about what might be a vision for that if we used it as a way to integrate, strengthen that vision for the 21st century, building on what we’ve been doing and what the Full Committee has been doing.
MS. GREENBERG: Yes, I think it would relate very much to this harmonization of vital statistics also. So, it could be kind of a vehicle or an umbrella.
DR. STEINWACHS: Okay, so we need to know which committee member is an expert on poling and then to get the scores. We need a score for each of these and how well it does and so on. Let me just walk through them and talk a little bit about it. For the current work, Bill, I guess Kevin is not here on measuring preparedness and surge capacity. I know that we’ve been waiting for the wrap-up of what used to be a secondary uses report, now it’s the public uses report on data. Why don’t you just say a few things about how you see what may be out there in terms of what would be desirable for this group to do or draw closure on.
DR. W. SCANLON: I think we had a very useful hearing way back in January. In many ways, The Secondary Uses Report sidetracked some of the final report. Kevin, Doug, and I have had a number of conference calls about this, and Kevin and Doug have done sort of done one interview with folks from AHRQ.
What we decided is next steps rather than a formal hearing for us to try and get a little more depth from some of the people that had contact with the hearing or others to try and lay out sort of what might be a direction for some type of report from that hearing, because I think the dilemma of the hearing was its richness in terms of breadth and the issue of what would be a good follow-on.
The way we characterized this issue was both one of the need for some kind of snapshot data but also the need for real-time information systems because what Katrina demonstrated for everyone was that, which we knew about the situation in the past is irrelevant after it had been dramatically changed and assessed.
So, one of the things was to try and get a focus that would be useful in the short-term — some type of interim reporting. Yesterday Jim Scanlon mentioned the fact that NCVHS has started the ED survey again and so that’s another development in terms of this process, in terms of some new information in thinking about how does that fit into an overall reporting. We’re searching for the focus of the interim report having been totally sidetracked by the Secondary Uses Report.
DR. STEINWACHS: Just in terms of thinking about timeframe, hopefully the Secondary Uses Report is going to be – I think Simon hopes it is going to be voted on today, and start moving its way out. Is that something – I guess our next meeting is February and then there’s one beyond that that would probably be around June or May. I am not asking for a commitment —
DR. W. SCANLON: We will try to regroup in terms of finishing these interviews thinking about of our February meeting as a working session and see what we can have for June in terms of maybe an interim report.
MS. GREENBERG: Someone may have called in.
DR. STEINWACHS: Yes, who joined us?
MS. MADANS: This is Jennifer.
DR. STEINWACHS: Jennifer, thank you for joining us. We’re talking about each of the five areas, two of which we’re currently working on and three are potential new ones. We’re talking right now about our efforts at assessing ability to major preparedness. We initially called that surge capacity but we broadened the statement. There was a lot of focus on the capacity of the system to handle emergencies and disasters.
So, Bill was summarizing where we are right now in terms of getting back into the next step of the February meeting. Are there other comments or thoughts about this area from other committee members?
MS. JACKSON: From my notes from the last meeting, there seems to be such evolving work going on at the time. You mentioned Katrina – Jim holding down the fort of command central – daily reports, field reports. There was so much happening at the end of the year that you wanted to take advantage of in terms of timing. Once the Secondary Uses Enhanced Report is hopefully on its own trajectory then we can just take advantage of all of that. My notes are filled with so much being collected for the preparedness —
DR. W. SCANLON: I agree. I think, again, there are these two completely and some ways separate paths that you can take. One is this issue of collecting information that gives you the kind of the current status of our resources. Then there’s the second thing which is what Jim talked about in the past, is this issue of what they did in the Department during Katrina and what they learned from that and how you can improve upon that.
This certainly ties with to HIT in all of this because we need the service, it is in the Secondary Uses Report the mention of the fact that there was a role that PDM’s in terms of being able to provide certain kinds of information and that is not in that report that has been discussed in the past about sort of the VA medical records system of being of much value for people affected. The question is, which I think is potentially separate from this inventory of how do you sort of put into place – how do you incorporate into the bigger HIT efforts the whole issue of preparedness for a situation where normal communication, normal capacity has been disrupted?
DR. LAND: One of the things that hit me during that workshop was I think several presenters talked about the issue that isn’t so much of counting beds and counting emergency room facilities and institutional things, it’s more of, because we know that there isn’t enough beds and there are not enough emergency rooms if you are going to handle a real problem. It’s more in terms of counting resources in the community and where are those resources located and how are they going to be developed, engaged and so forth. That was my real take homes for me. That makes it much more difficult in terms of – we can always do surveys of hospitals and so forth, but I thought that was really the take home for me, that’s a much bigger challenge to understand that and relate that to the community level.
DR. SCANLON: Right, it is not only just capital assets, it is also personnel, it is workforce, and then it is also supplies. This whole issue of getting supplies into a community — that was an issue with Katrina that some of the emergency packs did not make it in the first rounds, and the second round was very difficult to access. It is multiple layers here that could be pursued.
DR. STEINWACHS: Joan Turek put forward the idea that that really builds very nicely with the data linkages issue – like the California Health Interview Survey I gather, links its responses into local area resource data. I don’t know if it’s a county level or smaller than that, but they’re doing a level of linkage. I don’t even know what they captured but it was Crosswalk that I think she suggested at one time that this committee might want to look at between the two areas.
Okay, so we’ll look forward to February as a next step and continuing decision points.
MS. GREENBERG: I think that the Data Council in the December meeting is going to be focusing on the lessons learned from Katrina. Do you know about that? I was going to wait until I see the agenda but there might be the option of Bill or somebody even participating by phone. I think that is sometimes possible now in that Data Council Meeting to just get up to speed on whatever the latest is on that.
DR. STEINWACHS: That would be great.
MS. GREENBERG: That would be the second Wednesday of December.
DR. STEINWACHS: That discussion might also help sharpen — if we’re going to do next steps beyond what we have planned right now, what would those be and how would they fit into departments?
Okay, let me take us to improving health information through data linkages. We did get a response to our letter which was in the packets that were sent out behind Tab 6, that the Secretary thanked us for our data linkages letter and reported back on things that are underway particular to NCHS to try and improve the data linkages process. Some of that I think was stated a little bit differently than some of the things that we had pointed to in the testimony.
It is still I guess, and Gene you may have comments, and others — sort of the next steps, if there are to be next steps in that area, maybe we want to kind of link data linkages issues into other substantive areas could be one of those, into preparedness and measurement of medical home if we do those. One way to do that would be to sort of view that as moving into those other areas.
At this point, there isn’t something real crystal clear in my mind for that, next steps for that. Gene, why don’t you set off the discussion.
DR. STEURELE: I think the issue here unlike some projects where we have very specific issue – linkages is sort of a good thing to do with data and there are a whole variety of linkages and the hearings I thought, were very helpful in terms of identifying a lot of linkages that might take place but perhaps aren’t. That always left us with this issue of how do you stir the process. In some sense, I think by holding the hearing we did achieve some stuff. I know that one person from Social Security told me that — one of my big complaints you may remember in the very beginning, was you don’t often link social security records with Medicare records – including some other linkages they have already done in social security where they linked it up with some survey data – which give you things like some socio-economic data – you link it altogether and you can actually find out some really interesting facts about the distribution of health benefits across people in their lifetime. So somebody actually told me they were starting to move in that direction. So, maybe we serve as a catalyst.
I mean the question for the committee would be, do they, does it want to hold an occasional hearing or is it really something that perhaps the bureaucracy, I mean that with respect, the bureaucracy needs to basically take on but in a way that it spurs it more. Maybe they need to get an occasional cross-agency meeting on these issues and maybe they take place, maybe they don’t. I don’t really know how much the Data Council or other groups actually meet with other agencies as well, so it’s not just integrating health data, which is one piece that is integrating across agencies. So, I really don’t know the answer to that question. I don’t know how far, given our role, how far we can go in continuing to push that.
The issue came up yesterday if I remember, the issue I guess Karen said something to the effect that they were trying to identify the health status of disabled people. You maybe remember I responded that if you link DI records with some Medicare records, you can actually get some very interesting information. But again, I struggle with the process issue of how to when the opportunities are there, how to really make things happen more often.
I don’t know what else to do given our status, other than to occasionally raise the issue. It may be something the Committee wants to keep on its agenda, but bring up when they think the time is right. Do they want to hold a hearing every couple of years on something like that, what progress have we made or is it something that has become more internalized in the process? I think somewhere somebody in the system should be, in some sense, I want to say almost graded at least their success or their rating for what they do, determine in part by whether they are able to move this ball as opposed to hoping that somebody picks it up. I’ve been open to suggestions all along. Those of you who have worked in government certainly can add.
DR. W. SCANLON: I think the idea of the role of a catalyst, I mean that’s important, but one of the other things that emerged for me from the hearing we had was this whole issue of data access. That after we linked these data sets that it even may become problematic in terms of why they’re accessed to them.
So the question is, I think, is sort of what role can we play in making sure there is the maximum access consistent with this whole issue of privacy and confidentiality? Some of that has come up in data uses work. My characterization — and we are going to be talking about this in a while – when operations was contrasted with research, it was almost as if research was somewhat nefarious and we need to worry about the researchers who are trying to sneak in and get the data — (Laughter.)
DR. STEINWACHS: People are suspicious about researchers.
DR. SCANLON: Right. I think, you know, this issue of leveling the playing field in terms of access is simultaneous with sort of leveling in terms of protections is an important part of this. The idea that the more powerful the data set, the more prone it is to de-identification and is something I think we have to deal with.
The follow-on work with respect to de-identification potentially will take the committee in that direction, and I think that is at least another thread that relates to this that I think we should definitely maintain it.
MS. MADANS: This is Jennifer. I think, you know, there is a lot of work going on in both of these areas at least the agencies I mix with. I think from our perspective it is useful. I don’t know if you want to have a whole hearing, but periodically to have updates from the agencies on what they’re doing is kind of an accountability measure but also as a way of reinforcing that this is something that is worth doing because it is.
I know we cry all the time, but it is fairly resource intensive, and on flat budgets you have got to make choices about where you want to put your money. Constant reinforcement that there is use to this, that this is something worthwhile and reporting back. On both of these issues I think would be something that the Committee could do and to the extent that those things are heard by the Department and others, OMB, where a lot of this stuff does takes place in the OMB discussions, I think that helps us to. So, if you would consider doing that, I think it would be useful from the Agency point of view.
DR. STEINWACHS: I’ve scribbled down the idea of maybe in 2009, having a sort of progress update and bringing together some of the same agencies or different actors to sort of see what progress has been made on improving access, and I think you’re making the point, Bill, very appropriately, also how is privacy being dealt with so that the balance point and you pointed to the potential of exploiting technology to try and deal with some of this and is that going to be fair.
I think the idea, Gene, that you were saying, making sure that it’s not just HHS Agencies, but it includes — and I thought that was one of the wonderful things about that hearing was it went outside of HHS because a lot of what we need to know about health is held by information that needs to be linked into.
DR. STEURELE: A lot of people who attended the meeting I thought were quite excited about the issue, but again, I think they often went away with, okay now, what do I do next? But, there were a few practical suggestions made there – I think they are in our letter but I can’t remember now. For instance, several people mentioned that just even for this issue of access Bill mentioned, there are ways agencies have given access. It may not be ideal, but sometimes they bring in Fellows, sometimes Census point out these little — there were several comments about well, let’s figure out ways whatever we’re doing, we can standardize it so every time some new data set comes up, we don’t have to reinvent the wheel and go back through which is often what happens. All of sudden somebody get this data set, somebody wants access, how do we give them access? Then the lawyers say, ah, companies here – I can’t figure it out.
I’ve dealt with this in non health agencies, too. The legal tendency, which I raise with respect to some of the other things we do as a Full Committee, which worries me about when you start putting on all these requirements – the legal tendency is to say hey, it’s too much trouble, I can’t figure it out. I can only get in trouble for giving people access. I ought to stay out of trouble by not giving it. But, I think when we ask for a report on it, we can also ask for a report on the follow through on the very specific suggestions.
DR. STEINWACHS: Okay, good. So, Gene, maybe you and I can take a crack at sort of a one pager to take into the February meeting that sort of says what are things to follow up on maybe in 2009 — I’m just thinking an arbitrary time away — reconvening of some of the key partners to say are we making progress? Are there new issues?
DR. STEURELE: If you think about it, this waiting of what we, I mean on this privacy confidentiality side, we have people come in and report to us almost every time. Nobody even comes into report to us on how we’ve advanced. So, maybe we would not mind a regular report on, and maybe we have to figure out how we’re going to structure it, but maybe just the very process of at least getting a regular report. I don’t think it has to be every meeting.
DR. STEINWACHS: No, but we could do that or we could, at least once a year have a half day session before one of the regular meetings to convene and hear from people and get that kind of report going. Other comments that we can support here?
DR. GREEN: I’d like to express some enthusiasm for things I heard from both of these guys on either side of me – this notion of balance and recurring asking the question, are we balancing individual privacy against public good and the uses of data. That could be an ongoing thing that outlives everyone sitting around this table. That could be crystallized.
The way Bill, for me anyway, reformulated the notion of improving data linkages when he used his hands a while ago and he said, level the playing field here between data that are supposedly part of health care operations versus health data that are supposedly part of research. I think that is a very timely, very, very timely issue to draw attention to.
Those two things bring this is life to me the way improving health information data linkages don’t. That gives it specificity, scope and timeliness that raises my personal —
DR. STEINWACHS: We try to keep our jewels hidden under these obscure titles. Okay? Other comments? That sounds good.
Why don’t we move next to the harmonization of the vital statistics across states. Which in our voting system here probably got the highest endorsement. Jennifer, Virginia had shared with me that this as a potential area for joint activity between the BSC and ourselves. There are probably some timing issues on the BSC’s side, as well as there might be timing issues from ours. I was wondering if you could give us sort of an update and things we ought to be considering in terms of undertaking the harmonization of vital statistics across states.
MS. MADANS: Yes, and I think let me preface it by saying there was a little bit of confusion on our part about exactly what the scope of this was. I know when I was — I wasn’t at the last BSC meeting when this came up — but when I looked at it, I thought that it was something very different than what, in talking to Virginia, what might have been the intent.
As you all know, there is certainly a lot going on right now and seems very unsettled in terms of the reengineering of the vital reservation system and its relationship with a whole bunch of other administrative activities and lots of bells and lots of things going on. So, I think that that was the initial reaction was we kind of have our plate full here and couldn’t take on anything major and again, without a real clear understanding of what the scope was of your primary interest.
With that said, I think if the interest is in primarily in trying to create the electronic death registration system in a way that we think would improve the quality of the reporting of cause of death and it was really focused on an interaction with the reporters because its hard to do this in terms of the electronic health record which I’m not quite sure how you’d do the interaction but that is certainly on the back burner but I am not sure it is on the front burner right now.
There is always a lot going on in terms of improving reporting. If that was the focus in terms of moving the improved reporting from doctors writing things down to using these electronic systems, I think there was a little bit more sense of comfort that we might be able to move on that a little bit sooner. But, in terms of a much larger effort and in terms of harmonization, we thought that might be a little tough to do.
So, I guess my question would be what is the intent in terms of the near future in terms of what the Committee is interested in? Then, I think we might be in a better position to try to respond.
DR. STEINWACHS: I’ll make a comment and then turn to others. I think what we tried to characterize was mainly what Michael O’Grady was sharing with us about some of the concerns, and those did focus around mortality data particularly, and the barriers that exist in some of the state laws to make that accessible. Also, what came up in that discussion with Michael O’Grady at the time, was that avenues are opening up potentially with electronic health record and other sources to be able to capture information that was not capturable – maybe misdirect the source as the medical record about cause of death and what might be involved in that versus how underlying cause of death or causes of death and underlying cause of death is being dealt with now.
So, I don’t think that we have a very sharp vision other than a conversation about this and I think part of the reason, at least I’ll express my own, one of the reasons for enthusiasm on my part was that I saw this as sort of a first opportunity maybe to actually work together with the BSC. So, that elevated this at least in my mind.
So in part, Jennifer, may be that we need to have as a next step is a joint meeting of a small group at least, with us and the BSC to talk about what would be productive more specifically. Garland, is there anything you would like to add?
DR. LAND: Yes, as I see it, the system is plagued by two primary – I am not limiting it to mortality – I’m including –
MS. MADANS: You are breaking up. Can you get closer to the phone?
DR. LAND: I think we have several issues. It is not limited to mortality. It covers the waterfront – births, deaths, and other more minor definitions of vital statistics, marriage, divorces and abortions, that we have issues in terms of the timeliness of the data. There’s a wide variability across the states in terms of when they actually were able to close out their files and get them to the National Center. There’s a wide variability across the states in terms of the quality of the data and also related to the quality of the cause of death which is part of the focus.
The electronic birth and death systems theoretically are part of the answer to that, but they’re probably not the entire answer to addressing both the timeliness and quality issues. Those systems are very difficult to implement. As I mentioned in our earlier meeting, it’s going to be a decade now before we have a standard data set in births and deaths because it’s taken so long for the implementation of those systems.
So, we don’t have comparable data across the states in the nation now for birth and death data. I think that’s going to create serious problems for analytics. The states are okay, they can just analyze their own data. But, on a national level, we don’t have comparable data any longer.
Then we have the other issue that we don’t even have vital statistics in some traditional component areas any longer. Marriage data, divorce data, abortion data — all of those have been dropped at a national level. All of that relates back to funding issues, and that’s the reason why we don’t have it because we don’t have sufficient resources at the national level, and the resources also drive the other issues of course in terms of timeliness and quality.
So, it’s a complex set of problems. I might also mention that there’s another activity going on right now that the National Academy of Sciences is going to be holding a workshop in May on vital statistics issues. So, we probably need to make sure that whatever we do is in collaboration or maybe it’s a follow-up possibly. It’s a one day workshop, so it’s not clear. There in fact just meeting this week to try to develop the agenda for that meeting.
MS. GREENBERG: Do you know what date it is?
MS. MADANS: April.
DR. LAND: Is it April? I’m sorry —
MS. MADANS: I’m going to look while we’re talking and see if I can find it on my calendar, but I thought it was April.
DR. LAND: Yes, I didn’t bring my other calendar with me — I was going to look it up. It’s in that April, May time period. So, that’s another collaboration that I guess we need to consider.
DR. STEINWACHS: So, Jennifer, guide us. You know one strategy I guess would be to have some more conversations between us and the BSC about what would be valuable? What can we contribute working with them to these issues and what are they? I think just as you’ve laid out Garland, to pick specifically what things to focus on there and the timing. Maybe with the May workshop, or April workshop, maybe actually we ought to wait until after that workshop and see if that helps solidify what the BSC and we might do.
MS. MADANS: I have it as April 30th, but I’ll double check, and if that’s not the date, I’ll get that information to you. It was moved a couple times as these things happened.
DR. STEINWACHS: Garland, would you be attending do you know?
DR. LAND: I’m sure I will.
DR. STEINWACHS: Okay. It would be good to have representation there.
MS. MADANS: Over the years and a lot very recently, there has been a lot of discussion about issues and problems and challenges with the vital statistics system and that’s a fact and we all know it, and we’ve all been wrestling with it. It’s not that I disagree with any of the things that Garland mentioned. They’re all very worthy of further discussion. I guess from our point of view, we’d really want to think long and hard about how to tackle them.
We’ve been working on all of them, funding is the first, second, thirds, fourth and fifth problem, but that doesn’t mean we shouldn’t find other solutions. I guess we just don’t want to say we’re going to do something that is so comprehensive without thinking through what it’s going to take, what the outcomes might be, and what the chances of success are because it will take some work to do it.
We’re happy to meet. There was a small group in the Committee that was interested in meeting with our folks and Garland and other groups. We could try to work something out about what would be the best thing to do, but perhaps it is good to wait until that meeting is held and to see what comes out of that. We were hoping for some guidance out of that and work from there. But, if you feel that it’s imperative to start sooner, we can set something up.
There is the general issue of what should the US vital statistics system be, you know, if that would include marriage, divorce, and all that other stuff. But, a lot of the other technical issues you really have to separate out and require inputs from different kinds of people. So, it is a very complicated multi-factorial issue, and it would be a big commitment on the part of the Committee I think to do the whole thing but maybe its work to do or you just want to do pieces of it and see where that leads you.
DR. STEINWACHS: I can see Marjorie wants to say something.
MS. GREENBERG: Are you done Jennifer?
MS. MADANS: Yes.
MS. GREENBERG: Yes, okay. I mean I understand the things that Garland mentioned and the things that Jennifer just commented on. I was at a different breakout session I think when Mike O’Grady met with you all, so I didn’t hear all of his comments. I was looking at the write-up in your document, Don. Two questions: first, do you know what the issues were related to WHO?
DR. LAND: Yes. There has been a lot of discussion about is there a better way to collect the cause of death?
MS. GREENBERG: Okay, and reversing the —
DR. LAND: Well, not necessarily reversing, but just now that we have electronic systems, is there a better way of collecting the cause of death information, and I’ll just put that in a broad rubric, that then allows electronic systems to determine the underlying cause of death as opposed to we force physicians to make those decisions now, and they have a difficult time doing that because typically they don’t sign a lot of death certificates.
Most physicians only sign a very few in a year. So they don’t know the rules that pathologists follow, and if there’s a better way using technology to assist them in doing that, for example, one thing that has been talked about is should we have pick list. That’s where we get into the issue with WHO. That we understand that WHO puts constraints on how the cause of death can be determined and in what way the information can be captured.
We don’t know, we just hear that there are limitations the way WHO says this can be dealt with. We don’t know exactly what all that means, and we haven’t really explored are there other better ways of doing it? We all recognize that cause of death coding is problematic. The quality of the cause of death has been recognized for a long time to be having problems. But, we’ve never really looked at are there other ways of doing it now that we’re going to electronic systems? Where are our constraints with WHO?
MS. GREENBERG: I remember that discussion at the BSC about as we go to electronic systems, do we just make electronic what we’re already doing or is this an opportunity to rethink the whole process? The automated systems that the US has developed over the years and now have been adopted by a number of other countries have standardized the cause of death information, you know, what comes out is the underlying cause, et cetera.
I think we made a good contribution to improving the comparability, but of course it’s the comparability of, as your suggesting, deficient inputs. We’re still dealing with the inputs, and that’s a priority also of the WHOFIC Network, the WHO Family of International Classification Network, to improve the certification because if you don’t improve the certification, you can only improve the cause of death reporting so much.
You have to deal with what you get obviously from the whole certification process. Actually the WHOFIC Network has come out against pick lists, and I think NCHS’s position has been against pick lists as well. But, we don’t have time to discuss that now, but it would be worth exploring that issue.
MS. MADANS: But I do think that this is a good example of something that might be worthwhile doing some further work on, but it’s a huge area.
MS. GREENBERG: Exactly.
MS. MADANS: It’s a huge amount of research, and the thing that we don’t want to do is make it worse so anything we would do would need a lot of work. I think the fear is given where electronic health records are, that anything you might do now that would be a function of them might not bear the test of time.
I’m not suggesting that we don’t do this. I’m just saying that this one little area is something that might take up a fair amount of work on both the Committees and all the related agencies. It’s true, NCHS was very negative about the pick list for quality reasons.
MS. GREENBERG: Right. Two issues on the electronics and I only put them on the table, not to discuss them, because I know we are running out of time. But, one is the electronic death registration process and the other is whether — certainly I think there’s a lot of feeling that birth registration could benefit from an electronic OB record or an electronic health record. But, then the question is what is the relationship or might the relationship be between electronic health records and death registration?
I mean the electronic death registration and the electronic health records and their contribution to cause of death certification are two different but related issues. Actually, there are a lot of interesting issues related to the whole relationship of terminology to the terminologies, such as SNOMED and the electronic health records and how that might impact.
So, I think that the whole area of research that actually needs to be done and requires resources that go beyond what this committee or what the BSC could do, and as Jennifer suggests, you know, could be fairly resource intensive, which currently, the resources aren’t really there.
I personally feel vital statistics is the bedrock of our health statistics system. So, I would think the Population Subcommittee might even want to raise the fact that these areas need research and need resources to explore even if you can’t do all the exploration yourself.
DR. STEINWACHS: Jennifer, just to get your sense, one strategy would be for us to wait, and Garland and maybe others, will be attending the National Academies workshop and then try and have a small subgroup meet between us and the BSC to talk about are there specific things that we could undertake jointly where there would be an important contribution.
I think you have raised, appropriately, all the cautions and we are concerned about those too because we don’t have a lot of resources either. So we need to pick areas where we can provide benefit and I’m sure that the BSC feels the same way because of the very large agenda it has. Does that make sense to you?
MS. MADANS: Yes, it certainly does make sense to me. The alternative and this is certainly up to you, there might be people from the Committee attending this function in April and I don’t know if the Committee wants to have some input into what happens at that meeting. That would be the only reason to try to maybe meet beforehand to identify the things of most interest to the Committee that you want to make sure get on the table, and then meet afterwards.
DR. STEINWACHS: I think Garland is probably, at least around this table, probably the lead person on our side.
DR. LAND: We are making input into the NAS agenda. We’re doing that actually this week.
MS. MADANS: So, as long as you feel like you have enough influence in what will be discussed in that you’ll get something out of it that should make the system flow alright, I think that that’s fine. The whole impetus behind this meeting was to raise the level of concern about the vital statistics system and identify where we might lose players and things. This wasn’t set up because we thought it would be fun to do. There’s a little conniving going on here because we are very concerned about the future of the system. The conversation we just had about all the problems, well the trajectory of not going towards slow, steady improvement, it’s actually going the other way. We’re really concerned about declines in the system.
DR. STEINWACHS: I think everyone around this table shares that. There real question is where we can make a contribution that helps change that or changes the thinking about that. Let me move us on because we’ve got about 12 minutes before the Full Committee.
DR. STEURELE: I think one reason to think about whether we have any of those is just the shifting memberships of our committee or subcommittee, whatever. Garland being on it, and I think Larry has some interest too, I think that will be one of our strengths in terms of knowledge. That’s one reason I’d personally ranked it higher on your straw poll.
DR. STEINWACHS: Okay, good. Well this has historically been and still is, an important area for this committee to work on. I wasn’t trying to move away from that but I was concerned about the same thing you were Jennifer, about where do we focus.
Let me do this. Marjorie and I had some discussion about, as I shared before, about updating the vision or developing an updated, integrated vision around the 21st century. She and I talked about the idea of having a telephone call that she and I would talk about it and also get Dan Friedman involved to help shape that original report.
If there are others here who would be interested in that conversation, I thought we’d set up a conference call and talk about what this committee has been doing and share that with Dan ahead of time because he might be willing to be a consultant and help actually work on this if we do something, and come back in February or earlier with sort of a one or two page blueprint for what might be done that would build on our current work, build on our planned work, that would represent maybe a significant both update and greater specificity of the plan.
Does that sound like a good idea? Or, should we do something different? Because I think right now, it’s still pretty nebulous what that updating process would be and we haven’t really pointed to what would build off of what we’ve been doing. We probably can’t take on a huge new act that is totally separate unless we decide to set other things aside, but I don’t see us doing that. If that sounds reasonable, as I volunteered Marjorie to do this.
MS. MADANS: It sounds very reasonable, and I think we might want to have somebody on that call in addition to Marjorie who had worked on that before.
MS. GREENBERG: Maybe Rob Weinzimmer(?)
MS. MADANS: I was thinking somebody like that.
DR. STEINWACHS: Okay, well let’s try and put together the right group because I think the question is how do we make this useful as a next step? I think there’s a sense where the ability to keep this alive and reinvigorate it as a vision, but what does that really mean when we talk about specifics and how this committee may contribute?
Let me take you through the last one around which there was also reasonable enthusiasm. It was probably about the same as the update or maybe a little better, and that was the medical home and measurement for it, and then we’ve had yesterday at the Committee meeting, more discussion about what the potential is and what is the thinking already going on a AHRQ funded conference on primary care and the primary care measurement.
Larry, do you want to say a few things about how we might pursue this as a committee in your thinking?
DR. GREEN: Very succinctly. Through informal polling I can find no one in the country today that has a good answer to these two questions. How would you know t a medical home if you saw it?
DR. STEINWACHS: It feels good.
DR. GREEN: Secondly, how would you know whether it was performing appropriately or not? So what we do have is conceptual agreement. That is there’s a very bad case of harmony here that is unusual, that you have a large professional group in CMS particularly, moving in a direction toward this concept that has attributes.
But, the measurement of this thing and its performance does not appear to be clarified. It looks to me like an opportunity for NCVHS in its 59 year history of looking at what the measures are of the codes, the classifications. There is a void here that we could step into, specifically, it might be just holding a hearing, not unlike the surge capacity hearing, where we just found the interested parties, and tried to pull them together to explain how they are trying to measure this
The CMS report from Karen yesterday, said that they’re talking about doing another five year demonstration of VHRs in this medical home setting. Well, what do they want out of those EHRs and how are they going to know? So, this looks like a very timely possibility.
Another very specific thing that I have in my mind is that elements necessary to measure this thing called the medical home, we may have components of them in the NHIS and NHANE, MEPS, and NEMSIS and the census data. We may have elements of these data that if we just link them and take advantage of what already exists, then we might be able to do something. We might be able to identify where we just simply don’t have the right things. For example, an attribute of the medical home is advanced access.
Where there is a set of rubrics and measurements that IHI and others have been developing for seven or eight years about how you measure access. I don’t think they show up in most places, but maybe they could and maybe we’d find a way to measure this.
So, the idea that I warm to and have enthusiasm for is a serious look at the measurement of what qualifies as a medical home and how does it perform, and if we can get some harmonization of that.
DR. STEINWACHS: I’m enthusiastic about this too. I’m looking for as I get older and the risk of chronic disease keeps rising, I’m looking for a medical home, Larry. Whatever works.
MS. GREENBERG: All doctors keep retiring, it gets harder and harder.
DR. STEINWACHS: What do people think about trying to do — and I guess what you proposed, Larry, sounds appealing to me — is sort of bring together the key actors right now from CMS representation to professional groups and others who are involved in this, to try and assess where what’s the current status, what do they perceive as gaps, and the ability to measure the existence of a medical home and then the other is the performance of a medical home.
If we could do this in January or February maybe attached to the next meeting possibly.
DR. GREEN: Well it may be overly ambitious but I like the concept of deliverables because a deliverable could be some sort of summary statement about where we seem to have measures and where don’t seem to have measures. That strikes me as progress. That could be a crystallizing moment that might galvanize CMS work, AHRQ work, moving us long.
MS. GREENBERG: One question I have that you might know is, I know there’s a demonstration project at CMS. I know obviously that AHRQ is interested and they hosted the workshop, but what would make such a hearing more feasible is, sooner than later, is to have a lead staff person who knows the area somewhat and could really work with Larry and you, Don, and others of the Subcommittee on setting this up where we have on the surge capacity and on the linkage. Do you have any suggestions? I mean I think it would be someone who’s not currently staffing the committee. Although we certainly have the surveys and everything, I don’t think it would probably be someone from NCHS. So, if someone, the liaisons or whoever could help us identify an appropriate staff person to work on this and that would be appropriate.
I wondered about HRSA. Are they involved?
DR. STEINWACHS: Are they, Larry? Did you hear anything from them?
DR. GREEN: HRSA would be very logical but I can’t name a person.
DR. STEINWACHS: Why don’t we try and explore that?
MS. GREENBERG: We can ask Karen Trudel to explore it, at CMS.
MS. FARQUAHAR: I was trying to think of my contact there. My contact there, Denise Jeolot(?) might be —
MS. GREENBERG: Is John White the lead person at AHRQ?
MS. FARQUHAR: Yes, I think so. I would have to double check with him. He might have done something for somebody else. He is really busy.
MS. GREENBERG: Okay, because I think that would make it work better.
DR. GREEN: Don, another thing that just popped into my mind that I need to get out on the table this morning. I think we need to ask the questions of how the medical home link to public health and how will the medical home link to mental health. How will you know when that linkages exists? What will be the metrics of that measurement for a patient centered care? That’s another part of the explanation why it falls into the purview of this subcommittee in my view, because we sense that there is probably opportunity here, but that opportunity is not operationalized and it’s not defined. One way to get it defined is to go through the metrics.
MS. FARQUHAR: We had a meeting with the National Institute for Mental Health with Dr. Schoenberg(?). He is interested in getting very involved in the policy mental health aspect of things.
DR. STEINWACHS: Yes, if we could find one or two people to work with us.
MS. JACKSON: I’ll call Susan Queen.
DR. STEINWACHS: Okay, that would be great. Any other last moment guidance? We have to appear in one minute. Thank you all.
(Whereupon, the subcommittee adjourned at 10:15 a.m.)