[This Transcript is Unedited]
Department of Health and Human Services
National Committee on Vital and Health Statistics
Subcommittee on Population Health
June 16, 2010
Sheraton Crystal City Hotel
1800 Jefferson Davis Highway
Crystal City, Virginia
CASET Associates, Ltd.
Fairfax, Virginia 22030
(703) 266 8402
P R O C E E D I N G S
DR. STEINWACHS: I think we are supposed to go around and introduce ourselves first. Don Steinwachs, co-chair, Johns Hopkins, probably I am trying to acquire a conflict of interest – but I have none.
DR. SCANLON: Bill Scanlon, co-chair and no conflicts.
MR. LAND: Garland Land, National Association for Public Health Statistics and Information Systems. No conflicts.
MS. JACKSON: Debbie Jackson, National Center for Health Statistics Committee Staff.
MR. BUENNING: Doug Buenning, Assistant Secretary for Planning and Evaluation at HHS and staff member.
MS. JAMISON: Missy Jamison, NCHS staff member.
MS. GREENBERG: Marjorie Greenberg —
DR. HORNBROOK: Mark Hornbrook, Kaiser Permanente —
DR. GREEN: Larry Green, University of Colorado, member.
MS. KANAAN: Susan Kanaan —
DR. STEINWACHS: Bill and I had really stuffed agenda. Review of symposium slides. I have made two changes since the version you have. We at least need to go over those and other suggestions and then the more substantive part of this is what is our agenda going forward. The meeting this morning had some interesting thoughts about element three. Certainly the report that Susan and Bill provided leadership and cohesion and productivity to this — it would be great if we came out of this with at least a list of things we think may be on an agenda even though we may not boil it down to specifics, and then if there is anything else people think ought to be mentioned. Mark is thinking about it, too.
MS. GREENBERG: Do we have the capacity or do we even want to have the capacity to put the slides up there or no because I saw they were up in the other room, but that is because they have the capacity.
DR. STEINWACHS: We have the capacity to turn our pages. Garland is going to update. Why don’t we do the slides first and then go to Garland and then go to the agenda? Does that sound good? We will do them by the numbers I guess even though — we keep them on numbers. Number one is who we are. That was the easy part. Number two, many things to the current and past co-chairs. Bill is letting me do the presentation so I get to thank myself so I will. Do I pat myself on the back?
MS. GREENBERG: Assuming that in each case — these are such short presentations that in each case one co-chair will present.
DR. STEINWACHS: I think Bill gave me the —
MS. GREENBERG: And he asked you too, right, I remember.
DR. STEINWACHS: I understood I was instructed to.
MS. GREENBERG: But the question is — I guess I am just asking Debbie. Will both co-chairs be up there or do we want to just recognize the other co-chair or have him stand up? How do you want to handle this?
MS. JACKSON: There is plenty of room as to what they want to do.
DR. SCANLON: What about time?
MS. JACKSON: It is 10 minutes a piece.
MS. GREENBERG: I just think we should do it consistently across the board. I think we agree is just the presenter will be up there.
DR. STEINWACHS: As far as you know Lisa and Vicky aren’t going to be here?
MS. GREENBERG: No.
DR. STEINWACHS: Otherwise we get all the past and current co-chairs — the next slide is the population health slide which tries to give a quasi definition as I shared with some of you. I asked Marjorie if the committee had ever defined population health and the answer I guess was no in terms of precisely.
Then there are some things in the literature. I just pull the gist of —
MS. GREENBERG: The closest we came we did actually define the first and only kind of health statistics, but in that report the 21st century vision it wasn’t the goal of that report to define population health statistics, but it had the content.
DR. STEINWACHS: Look at this and see if there is anything — I am not hearing anything. I am moving on.
Accomplishments of this decade. I was smart enough and now I just have to find the time to do to roll all the reports onto my laptop because I need to look at these items. I have not yet read functional status report, but I know it is outstanding. Marjorie is going to make sure that I say — that was in 2001 — captured here are ones that Marjorie and Debbie put together.
MS. GREENBERG: The progress ones?
DR. STEINWACHS: Yes. Considering the amount of time we have I will try and say some things beyond what is just on the slides.
MS. GREENBERG: Tonight you are going to read the functional status reports after dinner.
DR. STEINWACHS: Anything on the functional status?
DR. GREEN: I have one question about — as a vocabulary standard that is a technical statement?
MS. GREENBERG: Yes. The Consolidated Health Informatics Initiative essentially identified standards, vocabulary and messaging standards for a whole realm of domains or a whole bunch of domains. And for the disability and functioning domain they recognize ICF as well as already recognized. The CHI had already recognized SNOMED. It could also be used, but the only new thing it recognized for that.
Then it also recognized for the messaging or whatever, LOINC — but that was a vocabulary standard. Is that your question?
DR. GREEN: Is that the right thing to call it — about vocabulary?
MS. GREENBERG: What would you want to call it?
DR. GREEN: I just want to know if that is actually what happened in 2006.
MS. GREENBERG: It was a standard vocabulary. Would it be better to say as standard vocabulary? I think it is right. If it doesn’t come off right, we can try to change it.
DR. STEINWACHS: Just in case someone were to ask even though we are not going to allow any time for questions following these presentations until after all of them are done — the Unified Medical Language System is that being used?
MS. GREENBERG: Yes. That is at the NLM.
DR. STEINWACHS: This is the NLM.
MS. GREENBERG: We can change these.
DR. STEINWACHS: That is fine. If someone said something about it, I would like to at least know where it is. I remember when they started on it. I didn’t know what the name was.
MS. GREENBERG: When the US decided to make SNOMED freely available as the terminology for electronic health records that is the mechanism through which it is really available to the UMLS. At the mapping that will be done between SNOMED and ICD-10-CM or wherever. I see PC is in the — it is in the UMLS.
DR. STEINWACHS: The UML includes SNOMED but also other things.
MS. GREENBERG: Yes. It includes 9-CM, now 10-CM.
DR. STEINWACHS: The next slide is the vision for health statistics in the 21st century. Why don’t you read through that?
MS. GREENBERG: What I was going to say was when you — on the ICF one there wasn’t room for it there, but I thought you could just mention that next week the National Committee is co-sponsoring a concern on ICF at the National Institutes of Health.
MS. JACKSON: And that is in the program as well.
DR. STEINWACHS: It is in the program?
MS. GREENBERG: What I was going through this morning all the different events. It is one of the latter ones.
MR. LAND: I realize it is a little bit confusing at first. We have a dot point that says vision for health statistics and then we have progress and it is not clear and as a separate dot point it is not clear that that relates to the vision.
MS. GREENBERG: I guess the case for all of that.
MR. LAND: It probably would have been better. I don’t know if we want to reformat now, but it would have been better if the progress was inserted under the vision so that you could see that it relates to that or if the vision was part of the title or something.
MS. GREENBERG: We can clean this up.
MR. LAND: Maybe if this is going to be on our website later on or something maybe —
DR. STEINWACHS: Why don’t we do it later. I will just explain to them that I am an engineer and they never taught me to write.
MS. JAMISON: That makes sense – you are stating something and then you are talking about recent progress.
PARTICIPANT: What kind of an engineer are you?
DR. STEINWACHS: It looks like it would support a bridge. Going from the vision onto the next was eliminating health disparities, strengthening data on race, ethnicity and primary language of the US collection of racial and ethnic data.
MS. GREENBERG: Interestingly enough just for your information I think the meaningful use interim final rule probably will adopt the OMB standard for race ethnicity. There is no standard as far as I know that is being adopted for either primary language or disability status. A number of years ago when this subcommittee did the functional status report, I think there were over 400 definitions of disability status used in the government and probably many more now. Those are areas for future standardization, but there is a standard. There is an ISO standard that has actually been adopted by the National Uniform Billing Committee and X12 for primary language. They could have adopted that.
DR. STEINWACHS: Taking you to the next one is — the title of this is now different. I took the liberty of pulling the title off of the letter. Let me just tell you what that title is and then the date was missing. The title now instead of data linkage is for improving health outcomes is harnessing the power of federal linked datasets to improve the nation’s health while protecting confidentiality and security.
MS. GREENBERG: That was the tag line? Is that what you are using?
DR. STEINWACHS: Yes.
MS. GREENBERG: What year was it?
DR. STEINWACHS: 2007. I figured that all the other ones are carrying essentially what the tag line of the title is and I would do the same. I figured that sounded very impressive. I don’t remember much about the confidentiality and security if that was the issue and why you didn’t share any of the data.
DR. SCANLON: It was the barriers to linkage.
DR. STEINWACHS: It was the barriers to linkage. It was the barriers to access — that is the only change. The next one is challenges — next decade improving population health. It is just a statement about what some of those challenges are. We get into the quality issue there on the last one of avoiding overuse, underuse and misuse.
MS. JAMISON: This is a minor thing. I don’t know. Challenges isn’t plural like opportunities are.
Technically you have two, but probably nobody will notice it except somebody like me.
DR. STEINWACHS: Okay. I will be able to handle that. Debbie, in terms of making of changes do you want me to try or are you going to do it?
MS. JACKSON: Our plan is that after the break out we would all get to Marietta so we could put the updates on — when we are finished we could just head on over there. That is how it is supposed to operate.
DR. STEINWACHS: Sounds like a plan. Just so you know – the order of the challenges — maybe I am out of order.
MS. GREENBERG: I find it very hard to look at these things —
DR. STEINWACHS: You were right and I was wrong. Left handed. Which way am I going here? We have — linkage sets. Then it was challenges with the unprecedented opportunities. That is where the challenge there needed an S. Then the next one was the one I started talking about. Challenges more broadly being faced in the American scene of disparities, diversity, variations of environmental exposure, and availability of services and quality of care. Those could be everywhere — sidewalks to chemical and other exposures. It doesn’t preclude positive exposures.
DR. HORNBROOK: No, I just meant that does it lead you to do a little bit of talking around it to make it clear.
DR. STEINWACHS: I am putting this down. Talk. The greatest challenge still is health behaviors. I don’t see that. With obesity and smoking not going down.
MS. GREENBERG: You could say environmental exposures and health behaviors — community and geography.
DR. STEINWACHS: Do you want to do that? Health behaviors. Availability of health services on even and common and I am fine with that part. And priority to avoid or reduce under use. I am not sure what priority means. And imperative. How about that?
MS. KANAAN: Replace and with a semicolon.
DR. STEINWACHS: Semicolon. Okay. Availability of health services semicolon.
Priority or imperative?
DR. HORNBROOK: Whether you say high priority to avoid or imperative to avoid. It is just a question of how strong you want to make this.
MS. GREENBERG: I think your idea is still good to put the semicolon after uneven. Forget the “and” and just decide what noun you want there.
DR. STEINWACHS: We have imperative or high priority.
DR. SCANLON: One word is always better than two.
DR. STEINWACHS: Imperative it is. Then the next is on challenges — population and health information locally not just nationally. Look at your information. Understand risks and opportunities — target that risk population groups and individuals. Anything on all that? The next one is challenges again — opportunity linking the EHR surveys and administrative data. Challenge EHR not design for collecting — information on patients — population.
MS. GREENBERG: Actually it is hard because you can’t do track changes and whatever. It makes it harder, but I think what Mark has done in his — it is hard because you don’t what the person did unless they did it in different colors. He had this meaningful use criteria promoting population-oriented EHR use as part of the opportunity which it probably made more sense there. Did you do that Mark?
DR. HORNBROOK: Yes.
MS. GREENBERG: And then the challenges, however, that they are not designed for collecting. If it is not too much trouble moving that thing up to an opportunity probably makes more sense.
DR. HORNBROOK: And we had multiple EHR vendors and they aren’t interchangeable.
MS. GREENBERG: I went more with the opportunity — that part of the opportunity but the challenges are not designed for it.
DR. HORNBROOK: Of course nobody has standardized patient portal — patients send in their information or go to their doctor which comes in as free text. We have no way of knowing how it is being stored and how it is being used.
DR. STEINWACHS: Mark, beware if there are any tough questions. Then the last slide —
DR. GREEN: I am seeing here — Leslie or John and I am just wonder if they are not going to want to see us acknowledge and challenge — privacy — or is that an intrusion in their report.
DR. STEINWACHS: What would you put?
DR. GREEN: The linkage between EHR’s surveys administrative — that is a really important opportunity and it just seems to me that it’s not just design features of the EHR, but there is a huge concern about privacy.
PARTICIPANT: My doctor is going to know all about my speeding tickets.
DR. STEINWACHS: And I about his or hers.
MS. GREENBERG: There is room for that here because we can just make this smaller font. The challenge just it could be again plural challenges would be the EHRs are not designed and made to address — concerns or something like that.
PARTICIPANT: There are technical solutions to most privacy issues — privacy issues in the sense of carrying things that are normally separate —
MS. GREENBERG: Obviously the more you link the more likely you could know about some — if these applications require consent if people have privacy concerns, you won’t get to the data anyway even if it doesn’t violate —
DR. SCANLON: I think of this as more as an element three discussion that we had this morning. I think of this more in terms of the element three discussion we had this morning. It’s not the issue of creating a huge database where everything is available and everybody. It is the issue of taking advantage of linkages for an application in which there could be very tight controls on what is linked. There could be very tight controls on who could be a user. That is all part of keeping the privacy and security paramount in your thinking.
MS. GREENBERG: Would you include an extra thing here as a challenge among the —
DR. SCANLON: I think it is worth acknowledging. The privacy presentations before this but I think it is worth acknowledging that we are very sensitive to the privacy as we were when we have the tag line from the letter on linkages before.
MS. GREENBERG: Exactly. And actually that is — Walter I think mentioned to Chuck. There should be something there so we could put our money where our mouth is.
DR. STEINWACHS: Let me try this on you. If under challenges we had two, one is link data create greater privacy and confidentiality concerns or something like that. The second being EHRs are not designed for collecting standardized information —
DR. SCANLON: How about stating the challenge on the privacy concern more positively — link data require — adequate or maybe a stronger word than adequate. Privacy.
DR. STEINWACHS: Require additional —
DR. SCANLON: Strong —
DR. STEINWACHS: Strong.
MS. GREENBERG: Attention too I think because it is true that some of this is all aggregated data and don’t have that strong policy. It requires attention to privacy. Do you think you need to mention security issues or just privacy and confidentiality issues? One way to address them or to pay attention to them is having security.
DR. STEINWACHS: Link data required. Attention to privacy and confidentiality period. We aren’t doing periods.
MS. GREENBERG: You don’t want to just say concerns because people are concerned.
DR. SCANLON: Protections.
DR. STEINWACHS: Protections. That sounds good. Last line coming up. The future agenda captured in three bullets. Policies and resource, identify and disseminate, useful population and health information, national and state and community levels — data resources, capacity to link data — information on health risks and population health. And then opportunities under patient protection and Portable Care Act. I tried to expand the research item there somewhat in response to good comments.
MS. GREENBERG: What I would suggest is hold this thought and see if in your next discussion you come up with anything else you want to add. I am trying to cross reference as to whether these all address the challenges that were in the pages before.
DR. STEINWACHS: It would be good to look at.
DR. SCANLON: There is a bit of objectives build into these items. We could argue that in discussing objectives you are dealing with both the opportunities that exist as well as the challenges that exist. In some ways we haven’t —
MS. GREENBERG: Are we saying don’t call this challenges of these objectives?
DR. SCANLON: It is how literally one takes challenges for the next decade as opposed to taking the second half of the title which is in our future agenda as —
DR. STEINWACHS: Or we could drop the challenges.
DR. SCANLON: You could drop challenges or you could do —
DR. STEINWACHS: Why don’t we just drop challenges?
MS. KANAAN: You have populations in the title — that seems to go — I didn’t even read your emails. I couldn’t believe it. I was watching all this traffic.
DR. STEINWACHS: Good, I am proud of you.
MR. BUENNING: Going back two slides, this is challenges for the next decade that has four items, population, and health information. The first three are all talking about population health, information needed locally. Linkage needed to understand risk — improvement interventions needed and then the last item doesn’t seem to fit. At least it is not parallel with the previous three.
DR. HORNBROOK: This is extra words. Need to evaluate equity of investments – if you want parallelism
DR. STEINWACHS: Does that make sense? Investments refers to —
MS. GREENBERG: I think it is an HIT investment -not just the HIT investment. The whole coverage. I mean everything.
DR. GREEN: The same expenditures.
DR. STEINWACHS: We could say equity of expenditures. Is that what you are saying?
DR. GREEN: It is a little aspirational to talk about expenditures being investments.
DR. HORNBROOK: Investments implies that you are going to have a future return. Expenditures seem to say you are paying for something that already went out the door and it is too late, but it is true that when you have unfairness of expenditures you are in essence not investing in people equitably, fairly. There is under use and over use, too much and too little spending makes it very unfair.
DR. GREEN: Doug, what were you thinking?
MR. BUENNING: It just struck me like this was a puzzle to pick the one that before that doesn’t fit. It doesn’t stand on its own either. If somebody is not hearing this talk and looks at these slides a year from now, that last slide as it stands now just doesn’t — it may raise some questions.
MS. GREENBERG: But if you add need too.
MR. BUENNING: I think so. Other people know what you mean by investments.
DR. SCANLON: I think it is a problem that investments could be interpreted in a variety of ways.
This is not going to deal with that problem — issue of investments versus expenditures. We could change it to initiatives — initiatives across the board.
MS. GREENBERG: I think it would be clearer then what we are talking about. Change investments to initiative?
DR. SCANLON: I was trying to keep it on the same line so the font wouldn’t change.
DR. STEINWACHS: Other suggestions?
DR. HORNBROOK: One of the things that distinguishes the US to the Canadian system is that they are much more in tuned to the issue of fairness than the United States is and in Europe of course also. They believe it is more important to deal with unfairness than to deal with technological advance. They will slow down growth. They will take money away from the top if they can bring the bottom up. In the United States if you are going to bring somebody at the bottom up, you are going to bring everybody up. Then you also got to make them all move forward.
DR. STEINWACHS: If you bring the bottom up you have to maintain the bearings by pushing the top way up.
DR. GREEN: Uwe Reinhardt – you’ve seen that slide of his of the universe. Don’t take this seriously but there is a big sun in the middle of the universe and it is called “me.” Then there is an orbiting thing out here and that is called “stuff about me.” And then there is another one that says “more stuff about me.” Then after that there is an orbit that says “other stuff” and then after that it says “nowhere.”
MS. GREENBERG: Who has this?
DR. GREEN: Uwe Reinhardt. Your point about the difference of the culture. A real challenge — for population health that we all agree that this is is that the country is so individually centric that we don’t have a sense of community where the whole idea of population health — going back to how someone a year from now. There are an awful lot of people in this country that will have absolutely no concept about thinking about community health.
MS. GREENBERG: It is not the American way.
DR. GREEN: It is being all about us. That may be one of our biggest challenges overall is this cultural distinction.
MS. GREENBERG: In a way that is one of the exposures. There are some communities where environmental exposures differ. There are some unique — I think there are some where things have worked where there is more of a communitarian view.
DR. HORNBROOK: Then there are communitarians who are very communitarian inside their in group and anti-communitarian outside their in group.
DR. STEINWACHS: It is not by accident that the poor live in the areas of the worst environmental exposures —
MS. GREENBERG: That’s the nowhere. Is far away from me as possible.
DR. STEINWACHS: Okay. Moving on – Garland?
MS. GREENBERG: You may need to — I don’t know exactly what the process is but you may need to actually — I think it would be kind of hard to just give these to — you have to sit there.
PARTICIPANT: Make the changes yourself.
MS. GREENBERG: Marietta will be glad to make them, but if she wasn’t in this discussion.
DR. STEINWACHS: If Debbie and I can’t agree on something we will compromise whatever – Garland?
MR. LAND: I just returned from my annual meeting. A year ago — I think I reported afterwards that there was great concern about the national vital statistics system and the direction it was going. I can report now that in a year’s time things have substantially turned around and major progress has been made in regards to the concerns that we had previously.
Our previous concerns were that there was a proposal, an actual proposed contract to the states to only collect what was called core data items, which is going to be a very minimal set of data that was available on the birth and death certificates. There were considerable penalties involved and states have less money and lots of things like that.
Over the past year we have had three what we call retreats with representatives from the National Center for Health Statistics and my association and we focused on how to improve the national system because we knew that there was not only state concerns but national concerns and to the call to the data, the timeliness of the data. The data was now at least two years, sometimes three years old in producing federal reports. There are a lot of issues around the system.
As an outgrowth of those meetings we developed concepts that will go into the new state — first of all, the contracts that have been proposed were pushed back for a year. It was time to rethink this. New contracts will be developed starting in 2011 in which there will be specific requirements in the contracts for data timeliness to improve the cutoff dates of when annual files will be available at a national level, when data will be submitted on an ongoing basis with the states, new quality of standards. The concept of core data items has been eliminated.
Then in recognition that what has cleared the problems often times is that there are a few states that had problems. It has been technological problems or leadership problems or staffing problems or whatever. Those have hindered the collection of the national data. If you have one state that is holding everything up which we typically had and it is usually a large state. It doesn’t make any difference how everybody else is doing. That one state creates a national problem.
We had developed a process now within the National Center and with my association of how we will start addressing those issues early on with the state and then as opposed to penalizing the state it will provide technical assistance to try and get the problems resolved quicker so it doesn’t interrupt the flow of data.
These and many other concepts were presented in the meeting and there was real good acceptance. One of the new things that is going into is that the National Center will now be doing all of the cause of death coding for the states. The literals from the death certificate will be sent to the National Center. They will then use a software package to do the coding and also to do the reject coding which is a manual process. That will include the quality of the data and probably the timeliness of causes of death.
In a year’s time things have dramatically changed and we are quite pleased with that. I think we have a pathway now for not only resolving financial issues which is where this came up initially but actually improving the system. Some of this is dependent upon — that is why I raised the question this morning about the budget. There is a significant increase in the budget for the National Center and particularly for the vital statistics system so that all the remaining states that are not collecting the 2003 data items will have funding from the National Center for the first time to collect the standard dataset. That has been part of the problem. We have some states that have been collecting the old data and some collecting the new data. It wasn’t sufficient financial resources to put everybody on the standard certification.
If the President’s budget does pass that issue will be resolved and then there will be money to also do some special projects in looking at the quality of the data which really hasn’t been done sufficiently. Things are moving in the right direction now.
MS. GREENBERG: I got very positive feedback — several people who attended as well.
DR. GREEN: Doug, do you have a perspective on this?
MR. BUENNING: No.
DR. STEINWACHS: I was going to say that no one dies in the emergency department so you can’t blame them.
PARTICIPANT: No on my shift.
DR. STEINWACHS: Get them out quickly so they are still alive.
MR. LAND: Just a continuation — one of the other things that has always been a concern internationally for decades now is that there isn’t sufficient training for physicians on how to complete a death certificate on cause of death. New York City became a leader in this a couple of years ago in developing a new learning tool that is on their website to assist physicians in how to do that, but it is tailored directly for New York City physicians.
What we are doing now as an association is we are going to take that product and modify it so it is a generic learning tool that any state can use for training other physicians and hopefully maybe go into medical schools which isn’t done now, to try to focus on better cause of death on death certificates.
MS. GREENBERG: This is going to modify it?
MR. LAND: Actually what we have decided to do is we have kind of changed in midstream, but we have decided to contract back with New York City and they are going to develop a generic module taking all the New York City specific stuff out and then they are going to give us the code and if a stage wants to have their state logo or something else in the system then they can contact the association and we will modify it for that specific state or if they just want to use a generic version, they can do so.
The original New York City version was very general in terms of who is targeted towards and we are going to be looking at developing an application or having a contract with them to develop an application so that if you want more specifics for oncology or more specifics on diabetes or whatever you can go in and select different types of cases to review how you would handle different types of death.
MS. GREENBERG: Is this generic module — are they on the public domain?
MR. LAND: New York City contracted it out with a private firm, but they are going to redevelop it for us using and including the public domain.
MS. GREENBERG: I personally am very interested obviously for HHS, but also as a co-chair of this education committee of WHO network. For the first time I think by the end of this month there will be posted on the WHO website a new learning tool for ICD-10 each chapter, et cetera, and there also is a module on certification of cause of death. It is much more basic I am sure than what this is.
MR. LAND: We need to be comparing that.
MS. GREENBERG: I can get it to you right now.
This future work will really be of interest internationally.
MR. LAND: In fact the National Center looks like they are going to fund us to do some international consulting now. It may be that we are going to go to South Africa first and that is one of the things that they were asking for was some resources on how to train physicians.
MS. GREENBERG: Everybody is interested in this and that is why we put at least a basic module in the learning tool. I am sure that this is going to be more. We want to make sure they are consistent. That is a generic level and a high level.
MR. BUENNING: Do they include clinical scenarios and then show how to code? I think the error for the longest time has been physicians write cardiopulmonary arrest as a cause of death, where it is the mode of dying. But the common pathway is not there.
MR. LAND: Trying to describe that you start and you build up to the immediate cause but what is the underlying cause that you build up to. It also won’t describe certain words that are unacceptable.
MS. GREENBERG: Do you have any idea of how to actually get people to do this. What do they do in New York? Is there any way they can record it?
MR. LAND: They are doing two things in New York. One is they are providing CMA credits for it, but they are also — in New York you have to use their electronic death registry system for filing a death certificate. That is mandatory. Before you can use it you have to take this course.
MS. GREENBERG: How long is the course?
MR. LAND: It is probably 20 minutes or 30 minutes at the most.
MS. GREENBERG: It may not be that much more detail than the one that we have internationally, but that is a big issue often just having some kind of hook to get some to do it.
MR. LAND: We probably as an association won’t get involved with that, but I expected our states will want to go talk to the medical society and somehow promote it through CMAs or whatever.
DR. STEINWACHS: CMA would be a nice carrot.
DR. GREEN: It is a very interesting. It seems to me we are trapped by our language a little bit when we use the word certificate, birth certificate, death certificate. What we aspire to is to affirm that a birth occurred and a death occurred something about that. And then a certificate, after they mentioned paper, was the way to prove that the birth occurred and that the death occurred and still your mother dies and you can’t adjudicate the estate because you don’t have a death certificate until two months from Tuesday. What are your thoughts on that?
MR. LAND: Let me address that. You are actually right on where we are too. Another activity that we are involved in with NCHS is to develop the next version of the Model Vital Statistics Law which is I think the last one on that 20 years or so ago. In that model law were are taking out the word certificate because you are right. What we are now doing — certificate implies a piece of paper and it usually implies — it used to be the piece of paper was what you would copy to issue to the family as the certificate.
Now we are moving to into the electronic age so there is no piece of paper theoretically. In some states there still is, but in the next decade or so there won’t be paper floating around. Now we are calling it a record. A record is going to be sent in. A certificate might actually be issued from that record. They are using three terms: certificate, record, and report. Maybe starting out with report which becomes a record and then potentially becomes a certificate.
DR. GREEN: Really what got me thinking about this Garland was I just spent five years on a certifying board and we had problems with forgeries. It was a time-limited certificate and there were varying intervals of time which you could meet requirements to renew your certificate. It was 1999 to 2007 and then they didn’t do it for 2008 and hospitals and health plans and insurance companies and physicians and patients wanted to know if this guy was certified or not. They couldn’t figure the hell out which one — they had a certificate that they would run through a photo copier and it would like it and all these sorts of stuff. What was done is basically stopping and issuing certificates. It is a website.
Our board owns and operates its website. Whatever the website says that is God’s truth until proven otherwise. You can say anything you want to but it isn’t on our website and affirms that you have an active certificate — what used to be our problem is a guy would lose his license in Arkansas and immediately move to Nevada and no one would recognize this sort of thing and an adverse licensure event wouldn’t show up and he would still be certified.
When you lose your license the next night up on our website, your certificate disappears. It is gone. It is almost gone instantly. It is literally within hours that these things occur. And all those phone calls. We used to hire an entire committee of staff to answer the phones — it just went away. It is three clicks and there it is. You are certified or you are not. Then there is a little button that says do you want to print this certificate out. Yes. Boom. There it is. It seems to me this is how this should happen.
MS. JAMISON: Can I ask you one more question as somebody who used to be involved in funding states? Who determines how much money the states get or what states get the money that is having trouble?
MR. LAND: Under what is called the VSPP, the Vital Statistics Property Program which is the money transfer from the National Center to the state to purchase the data.
MS. JAMISON: I am sorry. Is that a corporate agreement or a contract?
MR. LAND: It is a contract. There is a formula that we negotiated with the National Center a couple of decades ago that has specific criteria in it that determines the amount of money that a state will get.
MS. JAMISON: Do they get rewarded for good behavior and all? Will I get more money the worse I do?
MR. LAND: That has been the problem that there hasn’t been a lot of ways to enforce the criteria in the contract. It is a contract. Basically it is treated like a grant almost because the National Center has to get the data. If you don’t get it in on time, it just goes on and on. We have actually as an association encouraged the center, Charlie Rothwell, to put in more specific requirements into the contract so that we can get a better system in place than what we have now.
MS. JAMISON: If somebody thinks you are getting more money to help states — I just wonder who is going to decide?
MR. LAND: Some of that is obviously based on proposals and so forth.
MR. BUENNING: Was there evidence-based trial that showed what the status was before training and then two years after training the records were so much better, so much more accurate.
MR. LAND: There was a presentation at our annual meeting of the New York City system in which they had done that now. What they had found in New York City was – what alerted them to the problem was they had an epidemic cardiovascular problem. When they looked at it then they also had hardly anybody dying from other diseases. They have now done sufficient training of physicians for the last couple of years and now have looked at the relative differences in what was high before and what was low before and have shown that there are some dramatic changes going on because of the training. If you want to see that presentation it will be on our website pretty soon.
MR. BUENNING: Can a medical examiner or somebody in a government office change what a physician codes or is that final?
MR. LAND: It varies by state. I don’t know that too many of them will actually change, but in some states I know at least two states New Mexico and Vermont the medical examiner actually reviews every single death certificate and if there is some question about the death certificate he will call up the physician and then the physician can change it. The medical examiner usually would not change it himself. That is unique. That doesn’t happen. It certainly happens in large states because usually a medical examiner only is responsible for non-natural causes, homicides, suicides, and accidents, but in those two states they are looking at every single one of them which is really a great system but they are small and they can do that.
MR. BUENNING: Some states or at least the District of Columbia uses a worksheet. It is not finalized by the physician. It then goes to another level.
DR. STEINWACHS: Since they don’t do autopsies as much any more —
MR. LAND: Autopsies are a rare event.
MS. GREENBERG: I have a question that kind of segues into the next topic which I think is the future work. I think obviously everyone is encouraged to hear that things are at this point on a more solid footing — kind of a crisis with vitals of concern to both the BSC and the National Committee. We hope we won’t slip back — is there anything as you look in the next two years the priorities and the plans related to biostatistics program that would benefit from attention by the National Committee? I know the board of scientific counselors unfortunately has been kind of dormant because they did not get their new appointment. We were lucky that that didn’t happen at the National Committee, but they had people who went off the committee and these nominations — so many advisory committees and they have been delayed. They have one meeting I think in the last year and that was they had to have that meeting because after that meeting the people were all going off or something.
DR. SCANLON: They do have the appointments now.
MR. GREENBERG: Do they?
DR. SCANLON: Yes. The last meeting — it is about six weeks ago now. It was in May. Lynn took over.
MR. GREENBERG: But only as acting I think.
DR. SCANLON: No. I think she subsequently was named eprmanent chair. I don’t know who they are, but they named the other committee members but because of scheduling problems they only had a one-day meeting because they couldn’t get a quorum the second day because they had a number of new members coming on who couldn’t be there or something like that – I think they are now back on track.
MR. GREENBERG: They were delayed for quite a while, but I assume that vital statistics will continue to be obviously a priority for them and will liaise with them. Is there anything that —
MR. LAND: What their role will be versus our role, but some of the things are going on that would be appropriate to have outside review. First all is this whole look at the call to get the data and what type research needs to be done to look at the quality of data. Secondly, there is consideration being given to of actually dropping some data from the birth certificate because we don’t think that they could actually be improved — and it is just not worth collecting. There might some reason to have some outside review of that.
There was a third thing I was thinking of. Of course this whole training thing is of paramount to us right now. Another new activity that is being looked as what we call sparklies and basically — because the data has been so late, so old in getting out and the Center has been waiting until final data sets have been available it is problematic because of the tardiness of the data.
What is being considered now is to publish some health indicators based upon traditional data. If you only have maybe 85 percent of the data in from the states or 90 percent or whatever, still go ahead and publish something on a very timely basis even possibly every six months to show the nation what is happening that is stable from vital statistics data. Defining what those will be, those indicators would be is I think an important decision for the future. This committee may want to be involved in that. I don’t know if we want to get down to that level or not, but just naming some things that are in the offing.
DR. SCANLON: I think it would be important to coordinate with them because as you know they have gone through series of reviews of each one of HHS’ programs and they actually started with the vital statistic systems that the first review was a mortality — I think though I can’t swear that I know NCHS program. They are either at the end or they are close to the end of having gone through all the programs once so this has been a four-year effort.
Now the question is revisit. I think on the mortality review was probably one of the most extensive reviews, one with the longest list of recommendations. Other reviews took a higher level approach and made much more general recommendations with mortality review very specific. They may think that one of the things to do is to now circle back and see what has happened in several years since they have done their review. I don’t know who they may have replaced. I think Steve Schwartz. He has been there. He has gone on. He was the vital statistics whatever.
PARTICIPANT: Lou Saadi from the State of Kansas.
MS. GREENBERG: She is on now? She is a new appointment. Are you going to continue as the liaison?
DR. SCANLON: We can talk about that.
MS. GREENBERG: I would just say that part of the populations’ future agenda should continue to include this liaison relationship with the BSC.
DR. STEINWACHS: Yes. Why don’t we move to talking more about the agenda? We do have a final slide here and there may be some changes we want to make to that as well as more importantly we need to begin to define the future agenda in terms of actions.
MR. LAND: On your final slide I don’t know that I am opposed to this. I just want to raise — it says identify policies and resources needed. Is that something that we typically do is identifying resources?
MS. GREENBERG: We don’t find the resources but a resource need we might identify.
DR. SCANLON: It never came to it, but we have had some discussion related to vital statistics whether or not we would take a position and the BSC actually did.
MS. GREENBERG: I think we did too. We sent a letter right around the time of the ARRA saying that they are making all these investments. What about health statistics?
DR. SCANLON: That is right. I forgot. Blocking that out. I think it is in that spirit which is that the report that Harry is going to present tomorrow this notion of opportunity is predicated on having the resources to take advantage of the opportunities. They are going to have all these different sources of information out there but something has got to make sure that they are adequate. Something has got to make sure do the linkages that we are talking about. That is going to take resources in both areas.
What Jim said this morning about NCHS in some respects adequate for the moment. There should be a really important attention focused on for the moment because the marching order for next year is we need deficit reduction. There are two ways to get deficit reduction. One is cut everything. The other one is to make investments that may be get you bigger returns later on and you could argue that some of the interest in health care and health care costs that may be it is worthwhile to make the right kind of investment to lead the future of deficit reductions.
A reaction in many quarters is everybody comes and tells me is if you invest in me I will save you money in the future. Are you really going to deliver? That is a part of the switches. You have to be able to make the case concrete enough and in reliable enough terms.
MS. GREENBERG: The way the White House put it was you are supposed to identify programs that are not fruitful or bearing fruit. I will tell you like a place like NCHS you would have a hard time saying we don’t really need our health examination survey. We are so kind of bare bones. We don’t have a lot of wafts. I don’t know whether — as you said it may as we have seen whether we will be expected often to offer up a least favorable child.
DR. SCANLON: Since I was involved in one of the reviews for the BSC which was involved about the long-term care datasets within NCHS.
MS. GREENBERG: They wanted to enhance, right?
DR. SCANLON: They wanted to enhance but I guess at the same time in thinking about enhancing them it is also how does one take advantage of the new opportunities that we have identified. The nursing home survey is potentially a prime example. Because of the importance of Medicare and Medicaid to nursing homes virtually every nursing home in this country is certified. If you are a certified home, there is an assessment on every resident that is going to a central source and is available. There is a question of how can these administrative data be combined with a more efficient survey. It is much less onerous to field and not have to worry about response rate and cooperation from nursing homes and things like that.
I think what the next period in terms is rather than sacrifice who we are going to throw out the boat of how do we make everything more efficient and take advantage of these opportunities. In the short term that is hard because you don’t just do redesigns and you don’t tap into these new sources some of which are only hypothetical.
MS. GREENBERG: Now they are trying to get into assisted living and all these other things where there is no standardized data. You might substitute something.
DR. SCANLON: In that context one of the things that came up was to add something to the health interview survey we talk in addition here because the last information that we have on the overall US population in terms of long-term care is from 1994 to 1995. It is like a 15-year gap at this point.
MS. GREENBERG: Of what?
DR. SCANLON: Information about what — you have a functional disability and what are you doing about it in terms of the care that you are receiving.
MS. GREENBERG: You mean the disability supplement.
DR. SCANLON: Right. The question is for today how do we design new data collection strategies if we don’t have information to guide us, if our best information is 15 years old.
MS. GREENBERG: Yes. And it is still being used because that is the data available.
DR. HORNBROOK: The biggest growth is with assisted living and retirement where you have fee for service long-term care. You don’t move, you buy it and they sell it to you. Anybody who in those are in the survey.
MS. GREENBERG: Some of these things are being looked at by the BSC.
DR. SCANLON: The review was done for the BSC. It is on their agenda. It was done at their last meeting before their reconfigurations.
DR. STEINWACHS: Other things.
MS. GREENBERG: These are really high-level things. Identify policies and resources. Obviously that needs to be done. It goes well beyond the National Center. A lot of other places that collect population health. And then the linkage one you can build on past work I guess, but do you have some thoughts about how would you go about doing this. Would you start with certain priority areas?
MR. LAND: The first one is kind of mother’s pie.
MS. GREENBERG: That is what I am saying.
MR. LAND: In light of what Bill is just saying we know that most likely there is going to be cut backs in the next several years from the federal government that could affect population health data. Maybe this committee should be involved in advising on what we think are the priorities to maintain or to cut so that there is some outside review of that as opposed to just OMB and the CDC.
MS. GREENBERG: They weree really seriously facing budget deficit. They said don’t just cut everybody — don’t cut each survey. You have to take something out of the field. That was their advice to know, but as I said the population data go well beyond what is collected by NCHS. Ed Sondik has always looked to both of these committees to help him with those decisions. I am hoping that we are going to go up not down, but it may not be unrealistic.
DR. SCANLON: I think part of this meaning and it is in terms of this first bullets looking at the idea of state and community levels. One of the things to think about is what are the opportunities with respect to administrative data. We had probably four years now a quality hearing on the distinction between administrative and clinical data. I actually find distinction artificial because the diagnosis can be in both places as well as other things can be in both places.
There is this question of how and it goes back to our opportunity of electronic health records which are going to capture a lot of clinical information. How can some of that information become administrative data that gives us the detail that we are never going to give them the survey. We are not going to get down to the statement of community level sort of in surveys doing a great extent. How can we enrich what we are doing at those levels? Then the point that Don has raised on multiple occasions is how do we deal with what we are not going to get out of the electronic health records either in terms of this variable was not captured for this person or this person doesn’t have an electronic health record because they haven’t shown up in the system.
MS. GREENBERG: It is the same for administrative data.
DR. SCANLON: It is the same for administrative data, but I think it is this question of how do we attempt this new approach, and it relates very much to this bullet because if we have such high aspiration in terms of more comprehensive data at more micro levels, we have to have new strategies. Surveys are not going to do it.
DR. STEINWACHS: You could think of building off of health information exchanges. Some people aren’t sure that health information exchanges are going to continue as a model invested in the state level. How would you help them take some next steps and put a denominator under what they have to be able to link census characteristics to people in datasets that they do have and then how would you understand the extent to which people are getting care that is not covered by electronic health records — much like HMOs used to around surveying trying to figure out how much leakage was there.
DR. HORNBROOK: I thought health information exchanges were not repositories so the data flows through — to get something out of it we need to extract while it goes through and have some legal means for doing it.
DR. STEINWACHS: Or flip it around if you put it back to a public health authority. In concept you would think the health information exchange would know which people, something about distinct people in order to be able to access data.
DR. HORNBROOK: Somebody has it and says knock, knock I want to send this through. Open the door and it gets sent and here is where it is going to. We don’t need to know anything about this packet. Just send it on. Am I wrong about using exchanges?
DR. STEINWACHS: I thought the other side was I am going to Dr. Jones. I want Dr. Jones to have access to my records.
MS. GREENBERG: But there were pointers. Some might have databases and others just more —
DR. STEINWACHS: I thought at least there would be a way to identify.
DR. HORNBROOK: My understanding is that you would have to as a person who wants Dr. Jones to see your record to say something. You are going to have to tell where the record sits to send and they are going to be the ones that send —
DR. SCANLON: I think Marjorie’s point and what I have taken away is there are multiple versions of these exchanges some of which actually may have the data, others of which may have a record of where your data are so that exchange may provide that function. Then there is a question if Dr. Jones comes in sort of the exchange. What permission is needed for Dr. Jones to know whether you got services? We have talked about our breaking glass principle if it is an emergency that that could be —
I don’t think we have a model here and this is partly where state law is going to be an important factor. At different times we have had discussions of the state law variation and privacy rules which seem to be a factor in government exchanges and I think Massachusetts came up early on with the quality meeting years ago, one of the first quality meetings I went to where they were talking about the compromise they made which would identify for Dr. Jones which other doctors you would see.
I guess there is a question here of cross-cutting this again. This is a full committee issue because we are talking about privacy now which is going to affect whether data is going to be available. We are talking about standards and we are talking about quality. Our uses — which we are doing all these three things and saying the data are for treatment, payment and operations. Those are the domains and there is a question of how do we accomplish that and bring it up to the population level too.
DR. HORNBROOK: The treatment of payment and operations can happen with the pace of having no knowledge of any of those exchanges going on.
DR. SCANLON: That is true, but the question is can we also allow some of that to happen without sort of explicit notice —
DR. HORNBROOK: How many people are interested in what your data does for Medicare? To get their bills paid.
DR. STEINWACHS: We don’t want them to understand that.
DR. GREEN: I would like to build off of — heard you just raising the point that this is cross cutting across your subcommittees and maybe too granular for we are in this discussion, but as we think about the future work of the committee, I am interested in at least some consideration of whether or not the work of NCVHS for the next few years is best served by us staying in these subcommittee structures that way they are now.
The answer to that may very be yes, but the cross-cutting nature of these three bullets I think is obvious. When I look at these three bullets while they correctly track the population and health, they directly track the quality. I am just wondering are these created in stone or can the committee reshuffle its committee structure if it wants to — not necessarily do that but if we are at a juncture where we ought to reconsider some committee structure and see if we got it right.
MS. GREENBERG: Justine is definitely interested and as am I, in an executive subcommittee retreat to begin talking about the next two years which would obviously will involve the Full Committee as well. We have very productively over the last 25 years — since 1987 we have had an executive subcommittee. We have used those as a more long range type of thing and that is when we have gotten rid of subcommittees. We have added subcommittees. We have added work groups. We got rid of work groups.
I think the current plan or I think people are being poled right now is that the afternoon, the next meeting of the full committee is September 15 and 16. The afternoon of the 16th will be an executive subcommittee meeting, but others since they have come in anyway for the full committee meeting, could attend as well. The meeting is always opened anyway. This is exactly the type of thing that I think need to be looked at.
I would say that if not subcommittees, maybe ad hoc cross-cutting groups or whatever, but it is hard to do everything at the full committee level. It is too many people and just the logistics of it. I think using smaller groups to hold hearings, develop work or recommendations, et cetera, still probably is an approach that needs to be done. Even like, although the BSC never really had subcommittees, they did set up these groups to do all the peer review and it included both members and nonmembers.
In my experience committees that don’t have any kind of subgroups don’t accomplish that much. It is just too hard.
DR. SCANLON: There is a question. Think of the document for tomorrow, in some ways as a skeleton. I would argue if someone said you left this out, I would say gee, we didn’t mean to. There really as an opportunity there in terms of both information sources and information needs and information opportunities. We wanted them all to be in there and now there is this question of now that we have the skeleton how do we put some meat on it. That is where it is maybe this set of subcommittees or some reconfigured set of subcommittees. There still is this issue. This is very much like a skeleton, too. We need to identify what is the importance of ripe opportunities.
Now standards have obviously gotten a right opportunity. They have a mandate within the health reform bill to do something, but that is only kind of like stepping through the door because we have much bigger questions. The whole thing that Chuck presented on element three, broad framework, but how are we going to make different parts of this sort of happen. It is the idea of having a discussion that identifies the parts where we might think of contribution.
MS. GREENBERG: I mean like I see a lot of these — when you talked about challenges here, I saw a lot of things where standards are needed, but it is unlikely that the standards subcommittee is going to make those its top priority because they have all these other things they need to do related to HIPAA and everything else. You would want to include people who have that knowledge of the standards environment.
DR. SCANLON: That was why when we were doing the document for tomorrow that it became very important very early on that we have the representation of all four of the subcommittees that we really didn’t want to have it be a populations document or a populations involving that and that standards and privacy were just as important and critical to it. And it worked out much better about having everybody involved.
MS. GREENBERG: And that is why I agree that each subcommittee of the other subcommittee, should send somebody to this hearing on the 19th, 20th, and 21st. If you look at their agenda, I don’t think it is being addressed here, but one issue I have always had with the plan ID and the lack of a plan ID, but some of the proposals in the past they have had for the plan ID, is it would be useless for health services research. If you want actually to look at the effectiveness of the — an equity of the initiatives, you would like to have some way to classify the different types of plans or ways that people are covered. That may still be that the plan ID will — its major purpose will be and almost only purpose, to make sure the bills get paid better but in a way that will be too bad. It will really be an opportunity lost, but I hope someone from this group will be able to attend at least — I don’t know about the operating —
DR. STEINWACHS: Bill is going to be there.
MS. GREENBERG: You are going to be there. Great. For all three days? Good.
DR. HORNBROOK: I have a question. There is an RFI out from the National Center on the hospital discharge survey asking for information about —
MS. GREENBERG: I think the redesign got —
DR. HORNBROOK: It is on the redesign. The RFI is asking for vendors to indicate some interest in capacities, I guess.
MS. GREENBERG: There is one out, you are saying because — put on hold, but maybe they have done this instead.
DR. HORNBROOK: It is kind of a stalling thing I guess. I am wondering what the role of the committee is in watching that procurement. I guess listen for your reports when they make progress or —
MS. GREENBERG: I think we have never gotten directly involved with procurements, which helps us that we don’t have conflicts. It certainly would be interesting to follow.
DR. STEINWACHS: I think part of it the early on thought about is with the liaison which Bill was replying, was to have a conversation with the BSC about where interests lie and whether or not it is something that may be they are going to be paying attention to, is there an interest really here and the developments because the proposals actually go back and abstract records again, Instead of just taking data that exists on discharge, abstracts and so on, to get a richer dataset and therefore, you can get out of a discharge abstract. We might have an interest in that in terms of relevant information on population health and areas.
MS. GREENBERG: Also with HCUP you have to ask.
DR. HORNBROOK: The other elements of the RFI or hospital patient medical records, electronic medical records in lieu of an abstract or physically going to the hospital, and expanding the data collection from discharges to ambulatory care provided in the hospital setting. Getting the hospital outpatient departments to fill out the National Ambulatory Medical Care Survey if indeed they are also on electronic medical record system, and then getting the data extracted out of that EMR and feeding it to the NCHS.
MS. GREENBERG: It’s all in this RFI?
DR. HORNBROOK: Yes.
MS. GREENBERG: A lot of help this is.
DR. STEINWACHS: Thank goodness you came, Mark.
DR. HORNBROOK: Anyway it has come around to me through Martin Brown’s brother who is a vendor.
MS. GREENBERG: Who is Martin Brown?
DR. HORNBROOK: He is my project officer for my cancer research. It is six degrees of separation or three. Martin’s brother is a vendor potentially responding to this RFI. He is asking the HMOs to say, do you want to partner with us to answer this procurement potentially from the NCHS. It raises a set of questions about do I spend my time doing this versus cancer research. What do we actually do in terms of health? We are a national survey — I was just wondering because this relates to the EMR stuff we are talking about.
MS. GREENBERG: It does.
DR. HORNBROOK: If you are moving in that direction, how do we monitor or do we have any monitoring responsibilities for oversight for advice, for gee, this is great, look at discovery, and look at what is potential or is that too close to operations to be comfortable?
MS. GREENBERG: Certainly looking at the whole area of how EHRs can in the future, either supplement in some cases or replace in other cases, current population health data systems is I think very much in the purview of the National Committee. And probably at that broader level of more interest or to the National Committee then to the BSC, and there is more expertise potentially or more certainly knowledge of the EHR and administrative data in this committee than the BSC. It tends to be more demographers, statisticians, whatever.
DR. STEINWACHS: When is the BSC meeting?
MS. GREENBERG: September. I thought actually Virginia might be here, but maybe she will be here tomorrow.
DR. STEINWACHS: Find out when the BSC is meeting. That is really the question and then we could figure out roles.
DR. HORNBROOK: One of the issues like these health arrangement exchanges is that you have an arrangement with somebody like Kaiser, where there is a certain amount of data that is citizens collective and “verified.” It is shipped out in a packet that is secure, safe, and de-identified in real time. It is a background business operation between the government and Kaiser or between position X and the government. It is statistics reporting. It seems like number one it ought to be an informatics basic dream to get this done in real time and number two, get it done in a public policy way that you get real data secure and safe. It seems like it is plausible if I can shop instantly and have my bank account safe, why in the world can’t we send health data safely and instantly? I think the banks are way ahead of us in the health community sector.
DR. STEINWACHS: We will send it to Wall
MS. GREENBERG: How does this address the issue of EHRs is not designed for standardized information.
DR. HORNBROOK: Because we haven’t regulated the vendors to talk to each other. The only thing that we are doing is saying there is HL7 that sits out here overarching, but nobody is saying thou shalt fill in the blank in terms of making the data exchangeable between vendors — are we moving there?
MR. QUINN: I would just like to highlight the letter that came out of the meaningful measure’s hearing that recommended three things. One was that somebody be in charge of quality measures. Two, that we come up with a core set data model well specified to the level that it could be implemented and public and open so that it could be implemented in any given system. And third, recommendation from this was that it be part of certification requirements for the EHR vendor systems not that it be the only model, but that it be supported so you could have data model on the left, data model on the right, but somewhere in the middle is this core foundation that could serve as — the limiting factor here is it would serve as the basis of measurement strategy.
You are limiting what you can measure, but at the same time it is standardized across and the AHRQ supported quality dataset could be a starting point for that or other things could.
That connection piece is of course the start for both quality reporting, but also interoperatibility also plugging in things like a user interface or a display layer that is separate from EHRs. I thought it was a really solid concise recommendation based on that.
DR. HORNBROOK: The other business model that is going on right now is patients need to apply for disability and life insurance. Every time you apply it says you release your medical records, total medical record to the company in order to get your insurance coverage.
DR. STEINWACHS: If they can find it.
DR. HORNBROOK: If they can find it. Right now there is electronic record that a patient could have sent to the Social Security Administration or to Mutual of Omaha or to whatever, and Kaiser, it is one packet of information goes to one place to another and that is in their benefit. It is secure. It isn’t just popping around in the mail system somewhere. There are some really basic stories here about how patients could really benefit from the wonders of technology. People who really need the help are really suffering.
We need to use those stories to sell this so that we aren’t going through over to the negative side about all the bad things that happen.
DR. STEINWACHS: Keep on the bright side and not the dark side.
MS. GREENBERG: That is an individual —
DR. HORNBROOK: It is part of the at-risk population. Part of the at-risk population is do they have access to services they need. A lot of these at-risk populations have multiple needs. They need income. They need housing support. They need assisted living. They need rehab. They need job training. All of those things require certain application forms as our states don’t have things unified into a single form. States should do that because it would make a lot more sense to put all these data together into a single portal, evaluates their needs and takes their money and puts it to the patients in a unified way rather than putting it into each separate program which allows for often discontinuities.
Think about kids with special needs who are in schools who need medical care, who have parents in jail, who have parents in mental institution, who have parents who are just not doing their parenting. There are a long set of needs that need to be integrated, along with educational.
MS. GREENBERG: A lot of this was discussed. This is all sensitive data a lot of this. It was discussed yesterday at the privacy hearing. In some cases like insurance you have no choice. If you want the insurance you have to send everything. Some of these others you wouldn’t want everything sent.
That was a question that Justine and I were talking about briefly too. Do we need a separate quality subcommittee? Should quality be pulled back into —
DR. GREEN: Just to build off of that. Marjorie as we adjourned for lunch, did a head count of the life spans of the committee members and when people are finishing off their second term and can’t continue.
Then you also pointed out that the congressional appointees that are vacant.
MS. GREENBERG: We have openings right now.
MR. GREEN: We have opening now and openings coming. It just seems to me very pragmatically that we need to get straight about what we want to do with those membership opportunities that are really just around the corner. We need to get going on that pretty soon to recruit people to help.
MS. GREENBERG: Exactly. It will influence the types of people that we want. Right now with Harry going off, we have four openings right now. Unfortunately we can’t do anything about the congressional ones other than what we have been doing all along, asking are you ever going to appoint anyone, but for the other — there are two others, and then there are at least four other people some of whom have had two terms will be going off the committee regretfully, and then there are some others who might be reappointed or at least an opportunity to reappoint someone will be there. This will be about the biggest turnover that we have had for a long time.
DR. GREEN: Dark side, bright side. I have to be really careful here with Tim sitting across the table from me. It seems to me that they are at a juncture where the committee’s work is ready to take a turn. I see this as a real opportunity to recruit and refresh. This looks like a nice coalescence of circumstances that makes the end of 2010 look very promising.
MS. GREENBERG: I think that gets back to what Garland was saying about populations. I remember Lisa used to call it the United Nations or something, the subcommittee, particularly because when she became the chair we took all these others members, the long-term care, the minority health, there might have even been a third one and they all went in under populations. There are so many different things populations can do or could do. It is really important to go from this high level which is okay for tomorrow to say that, but I don’t know if you may want to have a — you could wait to see what comes out of the executive subcommittee retreat, but I would rather preempt it and say if you want to have a teleconference?
DR. STEINWACHS: I think on a Friday afternoon.
MS. GREENBERG: We are all so lonely now on Friday afternoons.
DR. STEINWACHS: Don’t go past four because that gets into happy hour time.
MS. GREENBERG: I think it would be good if we could have one in July, reflect on what comes out of tomorrow where we are and have some ideas about — just from our budgeting point of view too, at NCHS, if you want to have a hearing between now and the end of the calendar year then we need to know that for planning for it.
DR. SCANLON: I think we should put processes on the table and structures of how we go about our work in terms of gathering information, preparing reports, et cetera. The BSC model is actually kind of interesting because these work groups that they have had — there is a BSC liaison, or sometimes there are two to it, but their role is less than the actual members of this work group and these are outsiders.
One of the problems you have with volunteers is if you go to the well too many times, people get fatigued. With the BSC they bring in four or five people, fresh bodies for each one of the systems, that there could be some intensity in terms of that review, but then they are done.
And what they deliver to the BSC is both a written document, an oral presentation in terms of their findings, plus NCHS does an oral presentation giving an overview to set the whole thing up. In some ways for the BSC members it is a relatively efficient process in terms of gathering information and leading to a point where they can decide what they want to do about this. We can get fatigued. There is just no question about it.
One of the things I will always remember about Jeff Blair was talking about how one year he thinks he spent 25 to 30 percent of his work time on this committee. I always religiously tried to avoid being another Jeff Blair. It is just too much – except for last month. It wasn’t anywhere near that, thanks to Susan.
That is I think one of the issues and particularly if we start to think about things that are cross cutting and if we are going to start involve other subcommittees or bigger groups or something like then it is going to get more intense and we have to worry about how do we make it more efficient from the members perspective.
MS. GREENBERG: In the ‘70s we have these technical consultants — all the minimum datasets or whatever — they were basically developed by these technical consultant panels with one or two members of the committee and guided by the committee. Then we were told that was illegal. We couldn’t do it anymore.
DR. STEINWACHS: But it wasn’t a moral.
MS. GREENBERG: It might have been a moral but it wasn’t illegal — expanding the size of the committee which isn’t in law. You can’t do that, but things have changed back again now, and we can have these technical consultant panels and that is exactly what those are. Now it seems different because it is a peer review of a survey as opposed to trying to reach out that widely to stakeholders, which often is what some of our friends are, but the fact is it may fit some of these population issues better than some of the hearing approaches. You do have to have the money because they at least pay for those people’s travel.
DR. SCANLON: They have to travel and they do a stipend.
MS. GREENBERG: I don’t know whether they have paid any kind of daily rates of them or not.
DR. SCANLON: It is an honorarium.
MS. GREENBERG: It is not huge. It is a model that is again open to us although there are some constraints, but for quite a few years we couldn’t do it anymore but now we could.
DR. SCANLON: There is an issue of whether plans work which is the bad thing. Part of our hearings is they are meant to cover everything to bring up to speed and deal with issues and then deal with deliberations. If you could have some segment of that done more quickly and efficiently then you can focus more on what — what is important about FACA and what the real restrictions are on FACA, is they have to be public about their decision making. So, background material getting generated to give to the FACA, that is not under the same set of rules as the decision making process.
MS. GREENBERG: Like when we used under Gib and Dan, they did work under contractors. That was more of a contract. Right now actually that is what is happening with the standards. It is such a fast process that Margaret A. is doing a lot of the background work to get everyone up to speed on these things. We have these options within resource constraints, but you have to decide what you want to focus on.
DR. HORNBROOK: Do you have a genetic epidemiologist at NCHS?
MS. GREENBERG: Yes. On the HANES staff.
DR. HORNBROOK: Are you planning any reports on genetic biomarkers, population distribution, normal distribution?
MS. GREENBERG: If so it would be under HANES. They are the only ones who collect blood samples.
DR. HORNBROOK: And you are still doing it by primary data collections as opposed to abstracting or electronic medical records.
MS. GREENBERG: Right now we don’t have access to any of that information. Sure. That is something down the road.
DR. HORNBROOK: Think about whether there is something about genomics in the health of the population that this committee should be worrying about and advising you and the agency about a future vision of the health of the United States.
DR. STEINWACHS: Why don’t we do this because we are around three o’clock. Let’s go ahead and schedule a conference call, and all the members be thinking about what issues are out there that we might pursue. We are talking about a broad umbrella.
Then with the idea that we would come into the executive retreat with a tentative slate of things that this subcommittee sees as of interest. I think part of what Justine may want to do is look for things that have synergy. The point of overlap or joint interest it seems to me a crucial one. It would be good to come in with maybe a little longer list than we think is doable, and say here is a list of things that look like opportunities tht are relevant and timely and let’s see if we can come out —
MS. GREENBERG: And how we might approach them.
DR. STEINWACHS: I think if we can try to do that and we got a call in July, and we have another one in August and September, before going in. It may take more than one call.
MS. JACKSON: Maybe we can find out what is going with the material that Friedman mentioned this morning.
MS. GREENBERG: You mean the element three?
MS. JACKSON: Element three because there was so much talk about the connection and synergy and you raised the question, wondering how we cannot just be more informative, but just kind of get in. I can find out if there are going to be meetings.
DR. STEINWACHS: It sounded like he was probably going to get back to —
MS. GREENBERG: I know when the IOM does things. It is very hard to collaborate with them. They have their process. They have their committee. I do think we need to understand that better. Get somebody at least one person at one of those workshops, and then maybe our role would be afterwards.
DR. STEINWACHS: And the whole series they have on learning health care organizations that came out of the Evidenced Based Medicine Roundtable which has been transformed into a different entity. There are background things that are part of the learning health organization. It would be interesting for us to talk about learning health care and public health organizations.
MS. GREENBERG: He used the term learning health. He didn’t say health care, I think, which made me perk up.
DR. STEINWACHS: I think if you are dealing with EHRs is probably the probably the first target is learning health care organization, but certainly a public health system needs the same capacity for timely learning.
MS. GREENBERG: A learning system for health care and improvement of population health or health care improvement and population health.
DR. SCANLON: BSC meets on September 23 and 24.
MS. GREENBERG: BSC is meeting on September 23 and 24. We are meeting on the 15th and 16th.
DR. STEINWACHS: Beautiful downtown Hyattsville. It is one of those places that many people are attracted to sometimes for vacations. Next year, Milwaukee.
DR. STEINWACHS: I think there is an opportunity to attend another meeting now.
(Whereupon, at 3:02 pm, the meeting was adjourned.)