[This Transcript is Unedited]
National Committee on Vital and Health Statistics
National Health Information Infrastructure (NHII) Workgroup
November 4, 2004
Hubert H. Humphrey Building
Room 800
200 Independence Avenue, S.W.
Washington, DC 20201
Proceedings by:
CASET Associates, Ltd.
10201 Lee Highway, suite 160
Fairfax, Virginia 22030
(703) 352-0091
P R O C E E D I N G S [4:50 p.m.]
DR. COHN: Okay, this is a late afternoon breakout session of the Workgroup on the National Health Information Infrastructure, hello, would everyone please be seated? I guess we have someone calling in, is that correct? Mary Joe will discuss this in just a second. Obviously I want to welcome everyone, Simon Cohn, I’m acting as chair for John today for the workgroup. I want to first of all welcome Karen Trudel, who I think everyone —
Mary Jo Deering, you wanted to make an announcement before we go through the agenda about, before we do introductions.
DR. DEERING: The announcement is is that we are conducting an experiment in web transmission in advance of our November 12th hearing when we want to let people have access to the visuals that are going to be presented so we do have three speakers on the phone and while we don’t have a full agenda today why just as a test we’re putting up some of our documents so I wanted to ask whether the viewers at home so to speak can see what’s up on the web right now?
PARTICIPANT: Yes, we can.
DR. DEERING: See the tentative agenda?
PARTICIPANT: Yeah.
DR. DEERING: Okay, bear in mind that we hear everything you say.
PARTICIPANT: Yes.
DR. DEERING: Thank you.
DR. COHN: Well, it’s good that we know we’ll be connected for the November 12th meeting.
Okay, I think what we need to do is to do introductions briefly around the room, I’m Simon Cohn, acting chair and member of the subcommittee, member of the workgroup, and the national director for health information policy for Kaiser Permanente. Steve?
DR. STEINDEL: Steve Steindel, Centers for Disease Control and Prevention, staff to the workgroup and liaison to the full committee.
MR. BLAIR: Jeff Blair, Medical Records Institute, member of the workgroup.
DR. YASNOFF: Bill Yasnoff, ASPE, Office of the Secretary, and I’m the Office of the Secretary liaison to the workgroup.
MS. TRUDEL: Karen Trudel, CMS, I’m sitting in for Judy Berek.
MR. HOUSTON: John Houston, University of Pittsburgh Medical Center, member of the workgroup.
DR. HUFF: Stan Huff with Intermountain Health Care and the University of Utah in Salt Lake City and member of the subgroup.
MS. FISCHETTI(?): Linda Fischetti, Veterans Health Administration, member of the workgroup.
MS. WILLIAMSON: Michelle Williamson, National Center for Health Statistics, CDC, and staff to the workgroup.
DR. DEERING: Mary Jo Deering, National Cancer Institute, lead staff to the workgroup.
Introductions from those on the phone?
MS. BOWER: Cynthia Bower, ODPHD.
MR. KAMBIC: Bob Kambic, I was formerly with ASPE but I’ve been assimilated —
MS. CANAAN: Susan Canaan, contractor to ODPHD and NCVHS.
MR. RODY: Dan Rody, American Health Information Management Association.
MS. HYDE: Christina Hyde, Office for Civil Rights.
MS. MCANDREW: Sue McAndrew, Office for Civil Rights.
MR. DECARLO(?): Michael DeCarlo, the Blue Cross Blue Shield Association.
DR. BICKFORD: Carol Bickford, American Nurses Association.
MS. SEARCH(?): Katherine Search for the Association of American Physicians and Surgeons.
DR. COHN: Well welcome everyone, I think that we actually have just a couple of items for today and one is the, first item is to confirm plans for the November 12th hearing which of course is next week, how soon that is, I think the bigger issue is discussing plans for the January 5th and 6th hearings and I think we want to get everybody’s input on that one. And then we’ll take just a couple of minutes to discuss submission of research items for the NCVHS 2003-2004 report. And that’s what we’re going to try to have over the next couple of minutes.
Mary Jo I think I will let you walk people through the upcoming schedule for the hearings on the 12th.
DR. DEERING: In your blue folders you should have the agenda for the 12th and you should also have the contact information that gives titles, etc., for the speakers who we have identified. As we go through this panel at a time I’m going to remind us all of the questions that the workgroup put together that they wanted to see answered and these questions were shared with the panelists so we hope they read these guidelines and respond to them.
So the first panel which will be our introductory overview is a very high level panel where the questions that the workgroup said that they wanted to get at from these three speakers are what are the interests and priorities of the Office of the National Coordinator for HIT and other f for HIT and of other federal agencies, what are the broad parameters of the personal health records, what are the drivers and barriers. The comment I wanted to make is that originally we did not have CMS as a breakout speaker on there but they are very actively pursuing interests and possibilities in the areas of personal health records and would like to be able to speak to us about their interest so that that could help us listen more actively throughout the day.
So I’ll stop there with the first panel to see if there’s any questions or comment.
Okay, and David Landsky(?) by the way is now with the Markle Foundation, when he did his lead work writing the report that focused on personal health records although it had a title called Connecting Americans to Their Health Care, was the fact and he is now a director at Markle.
To go on to the second panel where we are beginning to get into organizations that offer PHRs but PHRs that are not derivatives of clinical systems. Now why you might ask do we have Geisinger up there who actually has epic systems which is derived from a clinical system but the reason that Jim Walker is up there is that a number of institutions that have epic systems, my health record software application, did a study of the user impact/user responses to this and so Jim Walker is actually up there as an author, as the lead author of a paper that looked at patient attitudes toward this personal health record program that was there and so we wanted to ask him in particular what interests and priorities did he turn up and what features did they learn that the people were interested in.
We have Brian Balm(?) at I think Jeff’s recommendation, they have a business model that they are proposing which is very consumer centric, they don’t have anything on the ground yet but they’re talking to employers so we wanted to hear a little bit about their business model and what they might do about interoperability.
Then we do have a couple of stand along PHR efforts, Simply Well was recommended to us by Kathleen Fyffe and other people in ASPE who had heard these people present, and David Herrington, the Medic Alert Foundation, they’ve moved from being just a telephone and a bracelet to having both a back end DHR and now a front end PHR. And the questions that we asked them to address are what functionality is offered, on what basis was it selected, in other words did they actually do any user patient research or did they just determine what functionality or did the vendors just determine what functionality would be provided. Who is actually using them, what features are actually being used, how frequently are they being used, what standards are being used, what are the business models, to what extent do they believe their products should be or are interoperable with EHRs, what are the barriers to interoperability, either with EHRs or across PHRs or within the vendor’s other products or across clients, how is user consent, authorization and control handled, how does their product or approach reach out to users with varying degrees of access to care, levels of health literacy and internet literacy, Medicare/Medicaid populations or populations with specific diseases. And mindful of the fact that they only have about 15 minutes to talk and despite our best intentions many of them will probably give us their marketing introduction for part of their time, it will be interesting to see how much we get at that.
I am prepared to do an additional follow-up email to these participants if the committee wants me to emphasize any particular things to them a final time before they appear for us. Any other thoughts on that?
DR. COHN: Bill?
DR. YASNOFF: I think it would be good to emphasize to them that they need to stick to their 15 minutes because otherwise if each of them takes 20 minutes we’re going to have virtually no time for questions or discussion and I think that’s really the most valuable part and I think when you tell them about the 15 minutes you can point out that they are likely to get questions and so they’ll have an opportunity to say more, so I think that would be a good thing to do.
PARTICIPANT: If you really want 15 you better tell them ten, no one ever sticks to what they’re told to do.
DR. DEERING: As you’ll see when we get on, and we’ve allowed an hour and a half in this session so if we tell them 15 and they go 20 we’ve still got some time, just barely, remember we do invite everyone, I think all of these people are planning to stay the day and so to the extent that as you’ll see in a moment our afternoon panel, we only have three presentations on the afternoon panel and so one of the questions I’m going to be putting to the workgroup is do you want to expand that afternoon panel, do you think it’s cross cutting enough, John Lumpkin has looked at it and thinks it probably is but again, if you feel strongly that we should add a fourth speaker or that by definition gives us more time for general Q&A, so another possible is that all Q&A with all the vendors takes place after the afternoon panel.
We stick to, from 10:45 a.m., I think that’s just a typo, it’s not 10:45, it’s actually 1:00. So we have an hour and a half ostensibly between 1:00 and 2:30 with organizations and vendors that do offer PHRs that are derived from EHRs and in a nutshell we actually ask them exactly the same questions that I enumerated for the stand alones. But again we have an hour and a half for just three speakers so that’s the agenda.
DR. COHN: Well, I guess I personally think that that looks fine, I’m actually a little concerned that if you, I’m not even sure that’s enough time if you have people that are, have had a lot of thought about some of these things you’ve given them relatively short shrift even with what you’re doing now. So I sure wouldn’t, unless you want just talking heads, add anyone more. Bill, did you have a comment on that?
DR. YASNOFF: Well, I guess I’m concerned about not having enough time for either the presentations or the discussion and I wonder if we could push back the 2:30 discussion of next steps or can you go back to the first panel, the first thing in the morning? Is it possible that we could start a little bit earlier to have a little more time? Is that a possibility? Like 8:30? Because I think these are going to be very, very interesting —
DR. DEERING: No, it’s been publicized now so we can’t push it back, we could make sure that our introductions only take, that we start promptly at 9:00 and we could possibly squeeze a few minutes out of it.
DR. YASNOFF: We have introductions, do it like 9:05 and squeeze a few more minutes —
DR. COHN: Well, let’s not micromanage this one too hard, I think that people need to do interviews and they still need to go and introduce themselves and all of that stuff so I think however your idea of potentially thinking about discussion of next steps starting at 3:00 is probably a very reasonable one.
DR. YASNOFF: And do we have to finish at 4:00?
DR. COHN: Well, I would ask those that have to travel if there’s any, is anybody coming in on this one?
DR. HUFF: I was planning to come and I would need to leave at probably about quarter to 4:00 or something, catch the last plane to Utah.
DR. DEERING: Sounds like a movie, sounds like a movie with John Wayne in it.
MR. BLAIR: Simon, I was going to listen in by conference call so I’m not restricted by time.
DR. COHN: You could probably go until 7:00 then. I think I’ll defer to John on this one, I think particularly given this is a Friday afternoon the day after Veterans Day, and I don’t think we had anticipated this was going to be the only time we were going to talk about PHR, that probably what we have is pretty reasonable.
DR. VIGILANTE: Can we have a working lunch so the morning gets extended? If we need to discuss more about it we can discuss it over lunch.
DR. DEERING: Again, as you can say you can give it to John but if we don’t start lunch until 12:30 and then you’ve got a half hour for people to go back and bring their lunch back, that would have given us 10:45 to 12:30 with these people.
DR. YASNOFF: But if we arrange for lunch to be brought in even if people have to purchase it and we can continue the discussion over lunch that might be helpful. Can’t do that?
DR. DEERING: I don’t think so, we’re right below the cafeteria in the Humphrey Building, I think we’ll just have to break for it.
DR. YASNOFF: Well, presumably we can be flexible that if the discussions run long our discussion of next steps can absorb some of that because at least we don’t have another panel.
DR. COHN: Exactly. Okay, well I think the answer is generally this is good to go.
Okay, now the more difficult question which is really moving towards talking about January 5th and 6th and what we may want to do at that point and I’m sure that will probably be part of the next steps discussion next week, but I think you also wanted to get some ideas to help —
DR. DEERING: Because we have very little time with all of the holidays coming up to make our decisions about exactly what you want to cover and what kinds of questions you’d like to ask. I have a few broad topics to through out but before I say that it in a way doubly bad timing that John isn’t here, he’s going to dinner with David Brailer and I suspect that he will in fact bring back some guidance, some greater sense of how the workgroup could be useful to Dr. Brailer’s office.
MR. HOUSTON: Having spoken to Brailer a little bit too I think he, and listening to Mark Rothstein about Privacy Subcommittee, I think Brailer does have an interesting in using the Privacy Subcommittee and NCVHS to deal with some of I think phony privacy issues related to NHII. So I’m thinking that that seems to be a topic that might be of great interest for the January meetings.
DR. DEERING: They actually have a hearing just after ours and I’m the line to actually help, and we actually stated that we would work with them, that our workgroup would work with them on that.
MR. HOUSTON: I’m just thinking, when was the meetings though for —
DR. DEERING: Pardon me?
MR. HOUSTON: You had indicated there were meetings.
DR. DEERING: I meant hearings, so our hearing is January 5th and 6th and they have hearings on the 11th and 12th and I’m meeting —
DR. COHN: John you’re part of that.
MR. HOUSTON: I know but I’m just —
DR. COHN: And I think as Mark mentioned earlier that that was actually part of the conversation was really going to be around consent —
DR. DEERING: And authorizations.
DR. COHN: — and access in the world of the EHR so I think that was really what you were referencing wasn’t it?
MR. HOUSTON: Yeah, probably some of that but why, well, I guess the next question, logical question, does it make sense to try to combine some of that if that’s really a pressing issue.
DR. COHN: You mean from the week before to the week after?
DR. DEERING: That we have some speakers and they have some speakers?
MR. HOUSTON: No, no, no, no, no, I’m saying if there’s really, if that’s the next topic of interest why have two sets of meetings related to NHII or the like, why not try to combine the meetings into one set of meetings.
DR. DEERING: I think the only issue is is that the only topic that the workgroup wants to cover next or other topics, I think clearly we won’t cover privacy —
DR. COHN: There was one, I would be actually happy to lateral the MPI issue to the Workgroup on NHII if there isn’t enough there. John, you can bring that back to Mark tomorrow morning —
MR. HOUSTON: Lateral the MPI issue back —
DR. COHN: The master patient index issue.
MR. HOUSTON: I know exactly what MPI is, I was just trying to think of the interesting use of the term lateral.
MR. BLAIR: Question? We have an NHII meeting in January, a Subcommittee on Standards and Security meeting in January, a Privacy meeting in January, are any of these going to be held on the West Coast or are they all going to be here in the winter? Planes cancelled, winter —
DR. DEERING: We did begin to talk about that issue at least in our workgroup and there had been some interest in left coast, or left central location, as I recall Utah had volunteered to host us and Simon had volunteered to host us, and I think as Marjorie pointed out the issue is that is significant extra cost for NCHS that flies people around and any staff and it would probably by definition the number of staff who go. And if often we end up paying some of our presenters and it depends on where they can from, so it’s all can it be economically justified, there’s no prohibition against us meeting out there.
DR. COHN: Obviously this is a call for John, I’m just the acting chair. I do know we talked about this last time, I was actually myself hoping we could to an Albuquerque for a change of pace but that’s just one man’s view of someplace to be in January. But what we did so though is an announcement coming back that it was going to be held in Washington so you can talk to John tomorrow.
MR. BLAIR: I’m sorry, I did forget that —
DR. DEERING: Marjorie we’re just at the issue that Jeff pointed out that there three subcommittee hearings in the month of January each of which are two days and are all three of them going to be in Washington, D.C., or can one of them move left.
MS. GREENBERG: What is the third one? I know there’s, this subcommittee? Well, I’m sorry I was not here, the Standards and the Privacy are obviously in Washington and they’re back to back. Now when were you planning to have the, do you have a date?
DR. DEERING: The 5th and 6th of January.
MS. GREENBERG: The beginning, that’s going to have to be, I think when that came up I said I think the practicality of having that one anywhere but Washington is minimal.
DR. DEERING: So it is in Washington.
MR. HOUSTON: Is there any way to maybe change the dates? I know it’s probably too late to do that but the sake of travel push a couple of these into the same week might make it a little more sane for some of the people if they’re going to travel to all of them.
DR. DEERING: I think this was based on John’s calendar —
MR. HOUSTON: For two day meetings and they’re in back to back weeks, I mean if we could combine them into one week it means —
DR. COHN: We’ve already got four days in the week after —
MS. GREENBERG: We’ve already maxed out the week that’s four days of that one —
MR. HOUSTON: I thought they were in separate weeks, never mind.
DR. COHN: If you all want to have private conversations with John about this one, I think there’s a limited amount and I think John heard your input, Marjorie heard the input about going to Albuquerque, something like that —
MR. BLAIR: Let me express my thought on this, when Marjorie indicates that there’s difficulties I am inclined to accept that without any, Marjorie has been very accommodating to us when we needed extra funds for people to come in and in every other way so if there’s a limit on this my inclination is to accept it, not press the issue.
DR. COHN: Well, that can be an individual conversation for you with John.
Let’s move, go back and talk about the agenda, which is really what the conversation I think was all about, and what it is that we may want to discuss. And I guess I’m presuming that A, there’s more work related to the patient health record, personal health record, at least I believe.
DR. DEERING: I think that was the assumption because we had initially talked about a two day hearing and couldn’t get one in 2004 so we said we’ll do one day now and we’ll do at least one day and why not two days later. So it is true that we didn’t have a fixed volume of work in mind for January but here as I understand it are some of the things that we had in mind.
There first was there is in fact such an enormous variety of these PHRs that a question was put on the table, we will have just two stand alone PHRs out of quite a field of quite a few, and then we do have the three vendors. There are other models, there are other models that may be dead ends or may not be dead ends, and so the issue is whether the workgroup feels in order to answer the question what is a PHR, that was one of the fundamental questions that the workgroup wanted to put on the table is what is a PHR, what are the definitions of PHR, what are the instantiations of a PHR, they really did, at least I understand that you really wanted to see what that full spectrum was.
So the question on the table is are two stand alone vendors of PHRs sufficient to give us the information we need to be able to formulate conclusions about understanding the spectrum of PHRs or would one part of the agenda be another panel or two of different kinds of approaches to a longitudinal personal record. And it could be that we move the name personal health record and that we expand it to talk about longitudinal health records or something like that.
MR. BLAIR: Mary Jo, I think you already have more then two different models available to us because you included the representative from Duke, isn’t that the third view?
DR. DEERING: Yes, you are correct, I guess the issue was that, yes, you are correct.
DR. COHN: I guess from my own perspective I actually think that you have a couple of people talking, I think that there does need to be, you need to be hearing more, I guess I’m particularly interested in sort of I guess the perceived business cases that drive organizations where people make certain, either individuals or businesses or hospitals or whatever to make certain choices about all of this knowing that there are free standing, there’s pieces that are really parts of EHRs, I think that potentially some discussion about that and hearing about why people, not just what they are doing but why they’re doing it, because I think it would be very helpful for the committee —
MR. KAMBIC: I think we especially need some information on the demand side because on the supply side there’s like 25 to 30 vendors already out there —
DR. DEERING: We can’t hear you very well, I’m sorry, I know that’s Bob speaking but could you speak a little louder?
MR. KAMBIC: We can’t hear you guys either so please use your microphone, MJ you’re very good and Simon is very good but the rest aren’t. I was just saying that it would be very helpful to try to understand the demand side a little bit, on the supply side there’s 25 to 30 vendors and I think Mary Jo said from stand alone on your own PC and you load this up and keep track of it, we have one that’s a USB device, all the way to everything is on a centralized server somewhere in the U.S. and you access it through a website. But why would want to do this, who’s going to do it, who’s going to use it, these are some of the things that I think we’re going to try to address from the CMS perspective but it would be very good to get other perspectives from patients, from citizens, to users, to see how they’re going to use it, what their vision is for these types of pieces of software in the future.
MR. BLAIR: At this point I think the ability of consumer to articulate how they’d use PHRs might be limited but I do think consumers or a consumer advocacy organization would be very helpful to discuss their concerns, either with their privacy concerns or their areas of questions or discomfort.
DR. YASNOFF: Well, I want to second those points, I think if we can find a consumer organization that is willing to talk about this and has some views of any kind I think it would be interesting to hear those views. Also I know there’s at least one example of a disease specific group that has set up a record system that’s this group, support group for parents of kids with hydrocephalus and they have established on their own what amounts to personal health records that they can access from around the country because they found that there was a tremendous need for this when they were traveling and they had to have access to a CT scan if their child got worse. So I suspect that’s at least one example, there may be other examples, and I think that would help to round out the picture that the workgroup gets of what the value of these things can be.
DR. COHN: John?
MR. HOUSTON: That was going to be my point is I think there are some disease specific EHRs and I know there are some related to diabetes and it might be helpful to get a good panel on that, so again, I’ll second Bill’s comment.
DR. COHN: Stan, do you have a comment?
DR. HUFF: Two thoughts, one was just that if there are 25 commercial systems, I mean if we could think about things that illustrate different parts of the model, so you’ve talked about the ones that are just on somebody’s PC at home, ones that are held by some independent third party, ones that are disease specific, I mean think of the aspects of those things and try and look at the arc(?) types if you will that exist. Oh, the other issue, this is different then who should present, but the other issue to me that needs discussion is in any of these models how are some of the public health related benefits achieved, in other words once, if this record is held by IHC and new decision logic comes out we can apply it as a company to the body of records that we hold. If this is dispersed in lots of different places it’s not clear to me how a lot of the public, the population based sorts of decision support and other things and disease tracking or other things would occur, and that’s I think an interesting issue to try and correlate as we talk to these folks, how does public health and population sorts of things, how are they supported in these architectures.
DR. DEERING: Another model that occurs to me is there’s a company out there called Nextcura(?) that has highly tailored patient data input and that from that drives a couple of things, on one hand it actually has decision support in it where it has reviewed the medical literature and synthesized it deeply disease by disease do that you type in your own health history and it says it would appear that the following treatments might be appropriate for you. And then as a second enhancement it’s got, if they need it, it appears that you might quality for the following clinical trials, so that’s an extraordinary link to make so it might be interesting to see —
DR. HUFF: One of the things that I would put into that population is like post marketing surveillance of drugs and that sort of thing, how can we accomplish those kind of things in a nice way.
MR. KAMBIC: I have another comment, it might be useful to have the Surgeon General’s people come in and talk about the thinking behind what their particular PHR is intended to do. Not just the software and sort of the functionality itself but why they thought that they should do this. Mary Jo you’ve —
DR. DEERING: Yes, I did, the Family History Project where you can as of I think it’s November 8th go to a website and type in your family history and maintain it. I don’t think any of us have seen it yet.
MR. BLAIR: Is that a private —
DR. DEERING: I also wanted to mention that there should be if not forward motion at least a confirmed process for additional standards work around PHRs, not only was HL7 finally just now under Don Mon(?) gearing up to launch parallel efforts to begin to move toward criteria, etc., similar to what’s happening with acute care, long term care, and ambulatory care, but in addition HL7 and the object management group have a memorandum of understanding, there’s a meeting that took place today and they are looking at specifically to work together on interoperability issues and one of the people who is behind it happens to be from Medic Alert who we will hear from, he’s actually a data person way back, and I thank ASPE and ONCHIT for putting us on to this. And his particular interest is as I say Medic Alert has this EHR/PHR and they’re the ones who want to be able to interoperate so it could be that we might even end up bringing back someone both from HL7 and/or someone representing this dual memorandum to see okay is this really boots on the ground now to begin to work out some of these issues.
DR. COHN: Now the other thing, and I’m just going to change topics radically for just a second because the real question is is what two days are we talking about PHR the whole time or not. And I think that there’s a place for it, I guess I would, having listened to David this morning, as we all did David Brailer, we’re obviously hearing about RFIs hitting the street around the National Health Information Network, we’re hearing, I mean there’s obviously been a lot of things going on in the industry with almost as I would describe a whole bunch of new acronyms that are it seems to be part of really this workgroup’s charge to sort of being, to sort of monitor and hear from and I think the Certification Commission and there were a number of others and we may want to spend a little time delving into those issues before they, and hearing from them how they’re doing. So I just, once again it depends on what the other issues are but it’s something that seemed from the testimony that David Brailer gave that it might be an appropriate thing for us to spend a little time on —
DR. DEERING: Just to capture it before you ask Steve, could I ask you, I’m not sure I know how to translate that exactly so if you would, I mean bringing in representatives of the various initiatives or again David Brailer’s office to talk about what they were doing.
DR. COHN: No, I think the specific initiatives, I think we heard from David, I mean I’m sure we could also hear from David Brailer but I think it’s a question we heard about all of these private sector initiatives and whatever we ought to be hearing from them exactly what they’re doing and what their part in all of this is. Steve and then —
DR. STEINDEL: To echo what you said, Simon, I think there’s a wealth of items that we need to be updated on that fall within the realm of the NHII Workgroup. We heard some from David Brailer this morning, Simon’s just enumerated them, actually the NCVHS has never been briefed on the HL7 EHR DSTU, so that would be an important thing.
DR. BICKFORD: Carol Bickford from the American Nurses Association, this is in relation to the personal health record information, and that is who will be taking a look at how these stores or custodians or software applications or ASPs mine the data? And if they are? And this requirement for consumers to raise that as a question?
MR. BLAIR: Did you say mine, m i n e or mind?
DR. BICKFORD: Mine, m i n e, well, it’s a function of minding a stewardship/custodian as well, but it’s out there using the data to help target for pharmaceuticals or other industries. Who’s going to be answering that question, is that the Privacy and Confidentiality group or is it you —
DR. DEERING: I think that would be a very good question, for example some of the ones like the Nextcura that I mentioned and I’ve heard some answers to that which is yes, it’s only de-identified, etc., etc., but I think getting it on the record would be a very useful thing to add.
DR. COHN: Bill?
DR. YASNOFF: I know you’re trying to avoid this, Simon, but I think it’s important to go back the topic of methods for patient identification.
DR. COHN: I’m happy to bring this up as an issue here.
DR. YASNOFF: And I think it would be useful to have a panel on the methods that are currently being used in community exchange projects for patient identification with the idea being that as we discussed in July I believe making some recommendations about how that should be done is something that would be, that is an important step in moving towards an infrastructure that we shouldn’t avoid.
MS. GREENBERG: I remember some email exchange on this and isn’t that planned for a March hearing?
DR. COHN: Actually I don’t know when that’s planned for, that was given to the Privacy and Confidentiality and Standards and Security Subcommittees to work on jointly and I think the time was to be determined. I think March may be the time it happens, I think the only —
MS. GREENBERG: It wasn’t going to be January I know.
DR. COHN: I don’t think it’s going to be January, I’m obviously sitting here in the back of my mind wondering whether that’s an important issue for us to talk about related to MMA and Part D but I also don’t have control over that.
DR. YASNOFF: I mean obviously we have to deal with it sometime and I think in thinking about how these things are prioritized and the timing of them I think it’s important to consider what is being implemented in communities and since a number of grants were recently awarded presumably communities are going to be implementing systems based on those grants and if they do not, if there is no recommendation as to how to do something it is likely they will all do it in different ways. And I’m not articulating this to come to a conclusion to say this is one when we need to talk about it but I think that’s how it needs to be analyzed in terms of priorities. There’s no point in talking about an issue like this after there are 100 different methods to do it that have already been well established in different parts of the country.
DR. COHN: Well, is there already 100 different methods that are well established that are being used in various parts of the country?
DR. YASNOFF: Well, if we don’t talk about they’ll be 200.
DR. COHN: I think there are probably best practices that we need to get down to.
DR. DEERING: Another non-technical area that I hear coming out, that I think we hear coming out very strongly about the RIOs(?) is the governance issue, and that might be one that this workgroup is the most suitable to look at and do we want to start having some very early hearings right in January before these RIOs actually get in place that could help inform them.
MR. BLAIR: I think that the methods of patient identification is an important issue, it’s going to take a lot of time, that’s not something I think that’s going to have easy answers that could be done in a day or so. I think the RIOs is another important area, I think the privacy areas are important, I think the personal health records, I’m driving towards a point obviously as I start to go down the list, you probably have many more on the list, I feel as if we’re entering, we really have momentum now in moving health care into the information age, all these questions are popping up, and the construct that we’ve had for this has been NCVHS and NCVHS continues to play a role, but as I think we could see by Jonathan Teich’s testimony to us that this other think tanks that are contributing, whether it’s EHI or whether these other commissions, and frankly I think a lot of stuff needs to be done in an expedited timeframe and I think there needs to be some thought as to how all of these topics can be addressed maybe within this next 12 months. And we may have to spread a lot of these topics out among several committees and commissions and think tanks and all because otherwise I’m afraid that some of them, the important ones, will drop through the cracks just because we don’t have a federal construct right now to address all these, or at least some way of coordinating them. I hear kind of a silence like maybe how do we raise it, is that a David Brailer issue, is that a Bill Yasnoff issue, Marjorie, is that, but I feel like we’re exceeding the capacity of our review capabilities.
DR. COHN: Well, Jeff, or are we just have not prioritized yet.
MR. BLAIR: What?
DR. COHN: Is it that we’ve exceeded our capacity or we just not have prioritized yet?
MR. BLAIR: Well, I think at this particular time as we make this transformation there’s a lot of need for guidance on all of these issues and I sort of feel as if NCVHS has a role to play but we can’t do all pieces of it and sometimes you wind up seeing pragmatically that people have turned to the eHealth initiative because they could get some of the answers in place, which they have which is good, and there’s these others committees and commissions that are, maybe they can do pieces of it. I think we play a very important role but somehow, I just hate to see important issues deferred until May or June or July or even later, I think there needs to be some construct for how do all these issues get examined within let’s say a 12 month period of time.
MR. HOUSTON: I think the question maybe even somewhat different, if certain things aren’t addressed in a timely fashion are they still relevant or is somebody else going to simply take them on and carry them forward. Listening to Brailer on a number of occasions he clearly has a very, he has an agenda and he wants to get it done quickly and so we have to be very judicious I think in what we decide to involve ourselves in so that we can be very timely and only work on those I think that frankly the NCVHS expertise is going to provide value added over something somebody else could potentially do separately.
DR. COHN: Steve, you had a comment and then Bill.
DR. STEINDEL: Yes, I’d like to echo what John Paul just said because I think it’s not a matter of prioritization, what we’re dealing with today is an environment where people want us to react to something in a matter sometimes of days and the NCVHS is not positioned to do that. And I think we have to have a good discussion of what is our role in this process, what can we react to or what should we explore, and perhaps set up for further reaction. I mean we did a marvelous job with putting out the NHII report because that was something to react to and now we’re seeing the effects of it and we should be looking at maybe we should do generation two of that report.
MR. BLAIR: I almost feel as if we almost need to examine our role and what types of things we should do and what types of things EHI should do and what types of things other committees need to be created to do, or research things, and the key thing that is driving my thinking on this is, extremely difficult to reconcile if another year or two or three goes by because they’ll be a proliferation of pragmatic solutions out there which will be difficult to reconcile. And so I feel that there’s a sense of urgency to try to get the architectures in place although you’ve heard me say that back virtually a year ago. I feel as if a lot of these issues need to be addressed because there needs to be leadership and coordination.
DR. COHN: Bill?
DR. YASNOFF: I agree with all that and I would like to suggest perhaps since there won’t be time to discuss this at the November 12th meeting that perhaps shortly after that we schedule a conference call to talk about what criteria we’re going to use in terms of which issues we deal with and what criteria we’re going to use to prioritize those issues taking into account our ability to perform the functions that we perform, primarily the speed at which we can do it which is not terribly fast, and also the primary function of the workgroup as part of NCHS which is to make recommendations to HHS. And so I think those issues that where as was said we have value added and we can address them, they’re not so urgent that they fall outside our ability to do them, and they seem to require some recommendations to the department, those are the issues that we ought to deal with. But I think we should actually schedule some time and I think we could do it on a conference call to have an extended discussion on this.
DR. COHN: And I have a specific follow-up on that but I’ll let Steve and Marjorie make a comment and Mary Jo and then I will comment about how I think that it needs to be handled.
DR. STEINDEL: Bill, what triggered in my mind during your discussion is what’s coming down the pike and what Jeff was saying about architecture, etc., should we perhaps think about scheduling something with regard to what’s in the RFI when it comes out, whatever that might be? I mean that could be a specific day I would imagine, I would imagine there’s enough questions in there to look at it for a day because we can send a letter to the Secretary commenting on the RFI.
DR. COHN: Marjorie and then Mary Jo.
MS. GREENBERG: Two things, I mean I think the idea of a conference call if there isn’t time on the November 12th agenda, shortly afterwards is certainly good because if you’re going to be meeting on January 5th by mid-December, well, first of all that means we actually, we need to have a tentative agenda posted by December 5th but then we can always add names, etc., but just from about the third week in December on I mean people are just not around. And so in fact we may even have some difficulty getting people on January 5th given that that’s sort of the, I think that’s, what day of the week is that?
DR. DEERING: A Wednesday and a Thursday.
MS. GREENBERG: I guess that’s the first full week after New Years, so anyway, just knowing the way these things go I think, I know staff are going to need the end of, the second half of February, or of November and the very beginning of December to get these agendas set up.
The other thing is I was just recalling but I don’t recall necessarily all the content but discussions that we had with David Brailer at the executive subcommittee retreat and sort of which of the various topic areas that were identified I think at the meeting this summer, which ones did he feel would be most useful for the committee to contribute to and there were some which he said well we’re planning to do X or Y or Z but if that doesn’t kind of pan out then we might want to come back to you. So I think we need to sort of touch base with him again on those issues and see whether, first of all go back and look at what those issues were, you may have them at your fingertips, and then also some of the ones that were kind of left open, to touch base with him again because again you don’t want to really duplicate effort. And you can do anything that you want but the advantage, I mean you’re not completely constrained by what the department says they would like you to do but you get a more receptive ear when somebody is looking to the committee for the recommendations.
DR. COHN: Mary Jo and then I want to wrap this —
DR. DEERING: Okay, what I want to do both say what I think I’ve heard in terms of potential topics but it’s also partly process, it will lead then into this process issue of touching base with David Brailer. First of all we thought that there could be value to somebody, certainly us, to get a slightly fuller picture of different kinds of representative models and illustrations of different factors, approaches, elements, to a longitudinal patient history. We talked about disease specific models, we talked about that there would be in fact quite a lot to talk about in the area of standards, I mean they are moving along. We talked about two specific things that are smack out of David Brailer’s agenda, one is governance, the other is the RFI, those are two things we know are on his agenda.
Then getting at Simon’s issue and Jeff’s issue, I began to pull those together, Simon said gee, there’s so many groups doing so many things do we know how they relate, Jeff wants us to look at all those groups and say can they do something we can’t do, so it seems to me combining those two concepts that we do in fact look at the various players out there, not just to form a map but with a more proactive outcome of saying okay, let’s tacitly or overtly delegate to each of these responsibility in these areas and that also is something we could do.
My final closing comment about David Brailer is that John is having dinner with him tonight and again he presumably will bring back a sense of his priorities. But finally we could put together this list, whatever John tells us that we should go with, and then we can still feed it back, I’m sure we have channels to get it back to David Brailer afterward to get his input.
DR. COHN: Yeah, now let me try to, actually Mary Jo you did a very good job. I guess my observation on this was knowing that we’ve got to finish up here pretty quickly, obviously John is meeting with David. The issues that we’re describing are actually issues not just for the workgroup but really issues for the whole committee and indeed I was reflecting as I was hearing all of this, I’m sure that they’ll be a conference call with the executive subcommittee coming up very soon, it’s probably something that we need to talk about because it isn’t just NHII, it’s Standards and Security, it’s Privacy and Confidentiality, it’s probably less Populations but these are questions of how we position ourselves.
I think Mary Jo you actually hit the right sort of tone in all of this stuff in the sense that we are not the coordinators, there’s actually somebody who was named by the President to be the coordinator. Our job is to facilitate, to help, to move forward, to add our expertise, I think if we feel that we have the responsibility to coordinate everything that’s happening in addition to our day jobs we are probably going to go down in flaming defeat on all this stuff.
So the real issue is where we can add value and make our contribution in all of this stuff and we just need to remember that. But certainly part of it is understanding the terrain, which I think Mary Jo is beginning to work on, and begin to identify that there are holes in all of this stuff that we need to observe as opposed to the feeling that we somehow need to be responsible for the grand plan and doling out the assignments which is certainly not our responsibility role nor do we even have funding for even if we wanted to so just to remind everybody where we are in all of that stuff.
Having said that I do think we’ll need to have a conference call after November 12th and I will mention that to him and I’m sure he’ll probably schedule something after that.
Now we need to wrap up, we are running way behind time here. I realize that we have not talked about the final item, which is research items. Does anybody have any research items that they want to bring up tomorrow or do you already have something?
DR. DEERING: I just want to remember why we had a specific assignment and Bill can leave because he turned in his homework a long, long time ago. And I just need, we can probably do this offline but we were supposed to have looked at any proposals or ideas about research that we wanted to bring or include in the annual report —
MS. GREENBERG: Well in particular ones that you’ve already made in the last several years.
DR. DEERING: Exactly, so therefore it should in theory have been things that are already on the table, we’re just pulling them forward to present. And I have not actually gone back to the NHII report, that’s where we would have to look because that’s really where only, that and the information infrastructure, the NII and our participation in that high tech effort were the only areas where we would have something to report. I started to say that Bill Yasnoff gave a presentation in Chicago for which I have slides, where he talked himself about research issues within the cope of NHII broadly speaking but I don’t believe that was actually our assignment if I understand it correctly, I’m happy to share it —
MS. GREENBERG: It was actually two part as I recall, one was specifically to pull out from, I can’t quite remember the time period, last four or five years maybe maximum recommendations that a particular workgroup or subcommittee has made for research, generally those recommendations would have the word research in them probably but I mean to be kind of simple minded but also, then also we were hoping that the workgroups and subcommittees would engage on somewhat more thinking about where other recommendations that might imply or suggest the need for research that maybe wouldn’t go into this upcoming report but might be things that you would want to develop in the coming year because in some cases maybe actual research wasn’t recommended for a number of areas but in fact your own findings, etc., from hearings and discussions would indicate that research might be indicated. So I don’t know and we thought we might actually have some discussion about that tomorrow, I think there’s time on the agenda, but the most important thing, immediate need for the annual report, the bi-annual report, which we’ll also be discussing tomorrow, is to identify specific research recommendations that in this case were made by the NHII Workgroup or related to NHII. And maybe those sort of more forward thinking things could come out, be discussed for the March meeting.
DR. COHN: Marjorie, thank you for clarifying that. Okay, any final comments? We’re running about 20 minutes late, my apologies.
MS. GREENBERG: What time is it? I thought you were going until 6:00.
DR. COHN: 5:30, I’ve been trying to finish this meeting for the last 15 minutes. Any final comments from those on the web?
MR. KAMBIC: Well, I was just thinking about what Jeff said and Bill said and trying to get your arms around all this stuff, it’s getting more and more complex and I think that a phone conference call on these issues would be extremely helpful and productive, this is just snowballing.
DR. COHN: Well thank you all, with that the meeting is adjourned.
[Whereupon at 5:50 p.m. the meeting was adjourned.]