[This Transcript is Unedited]
Hubert Humphrey Building
Room 705-A
200 Independence Avenue, S.W.
Washington, D.C. 20201
DR. LUMP: Okay we have a draft letter with lines in there, I’m just going to suggest the following changes to the agenda. Item number one which is discussion of draft recommendations to the Secretary regarding the development and maintenance of a directory of PHD-related activities, that we postpone that to our next meeting, along with the second item. There is a meeting of the Steering Committee of the Markle Foundation Connection for Health and a little birdie has told me that they’re probably going to focus a lot on the issue of the personal health dimension. That being the case I think it may be easier for us to identify where the gaps are and where we should address at our next meeting then it would be trying to discuss that now and their meeting is next Tuesday. But I will be there and Marjorie will be there and then we can share that.
MS. GREENBERG: Where are we going to be?
DR. LUMPKIN: Oh no, not Marjorie, Mary Jo.
DR. DEERING: I’m sure you’d like to go to New York Marjorie.
MS. GREENBERG: If they have power there I’ll go.
DR. LUMPKIN: Okay. Given that and that a number of people have to leave we thought we would focus in on the letter. Just a reminder, the letter that we started to talk about in the full committee, but then we stopped because Mary Jo wasn’t here, which was fortuitous, the function of this letter is that we heard folks come in from the next generation internet and they said basically we’re making decisions about health and health care and you guys aren’t at the table. Is that a fair summary of what we heard? And the purpose of the letter is to say to the Secretary you guys need to be at the table.
We got into a section of the letter that said well, nobody from HHS is playing at this game, and then someone, we got pushed back saying well, the NLM plays a little bit and AHRQ plays a little, well, there was another agency played a little bit. So then we got this paragraph in, yeah, that’s the wrong letter --
DR. DEERING: Back to the NII letter, the one that was given to them in item six I think in there.
DR. LUMPKIN: Item six in the workbook. So the issue was also raised at the full committee that the third paragraph really didn’t fit in with the rest of the letter either. So what I’m proposing is that we draft the third and the fourth paragraph, which would then leave us with the fifth and let me sort of read it and then we can work on the last one to make sure it’s strong enough. It would say National Committee on Vital and Health Statistics commends your dedicated leadership to enhance the nation’s health care delivery system through information technology. Your vision aptly emphasized the need for the comprehensive, I think we’ve all gone through that and what they’ve done, I’m just going to try to be brief.
The second paragraph talks about in a hearing before the NCVHS we heard from the folks, the program is designed to develop technologies next generation internet. These technologies can enable health care applications such as medical consultation at a distance, surgical intervention, simulation, facilitation, essential collaboration among clinicians and researchers, as well as the mitigation of care into the home.
Next paragraph then would read to ensure that the requirements of the health system are adequately represented the NCVHS recommends that the Department increase the participation of HHS agencies and federal interagency IT, research and development initiatives that are working to advance the National Networking Information Infrastructure. Several approaches might be productive such as establishing a new coordinated officer, designating an existing agency to develop and oversee a coordinating plan. Regardless of the approach HHS chooses the committee recommends that you personally indicate your support for this participation in the strongest terms. As other federal agencies observed we anticipate this activity will result in optimization of research and development efforts to meet the needs of the NHII and possible system operational savings.
PARTICIPANT: There’s a little transition problem with the two paragraphs missing but I think it basically is short and sweet and makes the key points that we wanted to make. I do have one suggestion already, small point at the top of back, the second page, there is a National Networking Information Infrastructure so I think what we really want to say is that they are working to advance and improve National Networking Information Infrastructure.
DR. LUMPKIN: Okay. I think that, you can probably just by adding in the first --
PARTICIPANT: Before the comma, you can just say in national networking planning or something like that.
DR. LUMPKIN: Well how about to ensure the requirements of the health system are adequately represented in this process?
PARTICIPANT: In this process, that’s fine, just something that’s better.
DR. LUMPKIN: And then I’ll refer back to the technologies that we mentioned for the paragraph.
PARTICIPANT: Can I ask one quick question: Jim Scanlon this morning indicated that there’s a Council on Application of Health Information Technology within HHS, is that --
DR. LUMPKIN: That really is an internal workgroup to look at, make sure that HHS develops systems, are consistent with CHI and other data standards. So we have agreement, we can move this forward then? If we can get someone to do up a revised copy so we can pass it out.
PARTICIPANT: Mary Jo we made some changes to the second paragraph, did you get those, too?
DR. LUMPKIN: Yeah, there are just a few small changes, I’ll show you. Okay, do we have any other business we need to take care of then?
DR. DEERING: The other letter is adjourned until when?
DR. LUMPKIN: Which other letter?
DR. DEERING: The letter that was on our agenda today which you drew lines on it in your hand. That was not a tab, that was sent out by email to you previously and --
DR. LUMPKIN: On the personal health record, yeah, we’re going to hold off until following the events next week.
DR. DEERING: This one doesn’t even address them all, the research agenda. Two recommendations that had come out of that, just so that you’ll be aware if I can get back to it, it’s on the back side, flip to the top of the back side, it’s a two sided letter, these were two things that you highlighted in your closure in your statement of action items at the end of the August 7th meeting as ready to bring forward to recommendations, for recommendations for the Secretary. So we can still adjourn it but they’re not about the research agenda, it had nothing to do with it.
DR. LUMPKIN: Okay, right. So why don’t we put this on, let’s have people take a look at this, if they have any questions. Do we want to maybe do a conference call so we can put it on the agenda for the full committee? Or unless someone has, why don’t we do this, why don’t we send out an additional note unless someone has an objection to this we can put it on the agenda for the full committee, just sort of have the committee take a look at it and then revise it as needed.
DR. DEERING: I do urge people to look at the second bullet, it’s got a lot of implications to it and why don’t you read it aloud for the record.
DR. LUMPKIN: The committee recommends that the Department promote the development of a minimum personal health information document as an early deliverable of the NHII. Such a document, which is not the complete medical record, would contain all essential information needed for continuity of care across multiple settings. Several private sector efforts in this area moving forward and HHS leadership could be invaluable in focusing, refining and supporting the most effective approach.
DR. DEERING: We sort of went several directions in support this concept at our August 7th meeting but in rereading and re-listening to the transcripts this is where we came out at the end so that’s why I think we need to make sure that we take a good look at it. There was a lot of talk around this topic.
DR. STEINDEL: Mary Jo when I saw this draft letter I was actually confused about seeing this bullet because my sense of the meeting as you describe it so adequately was that we talked around the issue a lot and we really couldn’t draw any conclusion that we could even establish such a thing as you mention here for various reasons.
DR. DEERING: I don’t think we got that far but there was certainly, I will be the first to say that there was not a clear consensus on exactly what this would be, but it did seem to emerge as something that we wanted to move forward on, so I think that’s why maybe we need to just take another good look at that, maybe a conference call would be useful, I’d be happy to try and schedule one if you want. But I don’t think it’s ready to go right to the committee.
DR. FITZMAURICE: There is motion outside of NCVHS and the Department for doing this, it turns out that a lot of the state medical associations have their own here is a page of what you should take to the next doctor but they’re not uniform, so ASTM would like to develop a national standard on this and they’re just getting started, it’s also subverted by HIMSS and by the Massachusetts Medical Society. AHRQ is hosting a meeting on this this coming Monday at the National, the Sheraton National Hotel in Crystal City to get people together to see if it’s a good idea. It may be that it’s something that’s consistent with the National Committee on Vital and Health Statistics and leadership is all that’s required in this one. It looks like there’s a lot of private sector support for pulling it together.
DR. STEINDEL: Mary Jo what I understand is the problem, and the problem also occurs in the CCR, is that there is a minimum dataset, but that minimum dataset actually results in something that’s basically trivial, a large part demographics. But the clinical part of it tends to vary with respect to condition.
DR. FITZMAURICE: And the specialty.
DR. STEINDEL: Yeah.
DR. FITZMAURICE: And so that’s why there’s a section in there for the specialty.
DR. STEINDEL: Yeah, and so then when you start saying that we recommend a minimum set of personal health information that minimal set may be very minimal.
DR. DEERING: I don’t know that we had, I know that our discussion did not say that we had any sense of what the minimum would be, or that we were intending to try and outline what that would be.
DR. HUFF: Yeah, it seems, the way it’s stated now it seems like a non-sequitor, it’s not the complete record but it’s everything you need.
DR. FITZMAURICE: It actually turns out to be what the doctor thinks that the next doctor who sees you needs, it’s a list of the medications you’re on, it’s a list of your allergy, and not a whole lot more, maybe some recommendations, do this --
DR. ORTIZ: This is something that I brought up last time and got discussing this whole minimal dataset --
DR. HUFF: If I’m going to a specialist about my parathyroid disease that isn’t going to help at all, or not much.
DR. FITZMAURICE: But it might help 80 percent of the visits, so it might not help the 20 percent.
DR. DEERING: Well my understanding is that actually this CCR at least as it’s being done in the state of Massachusetts actually would help you because in addition to whatever this generic minimum dataset would be is it’s coming with a discharge summary or whatever, or discharge whatever your referral was, it would indeed have to contain all that pertinent information, at least in the state of Massachusetts it’s for referral purposes as well, so it’s not --
DR. HUFF: Is this a printed document?
DR. DEERING: And they’re trying to move it to --
DR. FITZMAURICE: Yes, right now in Massachusetts it’s a printed document.
DR. ORTIZ: Right now it’s a printed document but the CCR actually has grown to more then just this very small set of things, it’s actually grown considerably in the last few sessions that they’ve had. The thing I was going to say is that, I don’t know, the first sentence I’m not sure that that’s the right sentence because I know there was a lot of debate the other day but I think to me the key point is the very last sentence, is the fact that a lot of private sector initiatives are going on out there like the CCR and I think that it’s important for us to kind of know what’s going on and try and provide guidance because these efforts are going on anyway and, for example, I’ve been going to the CCR meetings and I’m concerned about some of the stuff going on there and so I think it would be good for us to at least be involved in some way, and whether or not we go so far as to recommend a minimal health information, minimal personal health information or minimal dataset or whatever our recommendations are, to me the key is that last piece because it’s very important because all these things are moving on and I’m not sure if they’re all heading in the right direction.
DR. COHN: As you’ve all noticed we’ve lost the chair, I think he was waving at me to sort of run this while gone. So what would you like to see this turn into, I mean obviously I think the experience most of us have had about a minimum personal health record document is it very quickly turns into the maximum or a sub-maximum or more then a minimum or whatever and we’ve even gotten to datasets and that’s the reason why we try to avoid datasets. It appears that there’s almost more that the government needs to track the efforts or to participate in this field, is that what you’re sort of trying to push?
DR. FITZMAURICE: I would say yes because you don’t want it to grow into an electronic health record, you want it to be something small and it doesn’t have value if it’s everything, you can never get there.
DR. HUFF: I think it’s, what you really want is everything and then the ability to produce a direct report about the things you’re interested in.
DR. FITZMAURICE: But what can we get to in the next two years?
DR. HUFF: Get to where?
DR. FITZMAURICE: A piece of paper that says here’s what you ought to carry to the next doctor.
DR. STEINDEL: I mean initially, Stan, what was --
DR. FITZMAURICE: I know the allergies.
DR. HUFF: I’m not convinced that what you can put on one sheet is going to be useful, I’ve got to understand more about your use case here because you’ve got a lot of people interested in doing it but I haven’t understood, I’m not opposed to this I just don’t understand enough yet --
DR. COHN: Well, Stan, are you objecting to the fact that we’re recommending the Department promote the development? I think maybe we were beginning to modify this one to be more tracking then participating in, that’s a little less strong then what’s here. I mean what level of support or disagreement do you have on this one?
DR. HUFF: I’m with Eduardo, I think the last sentence is great, we’ve got a bunch of things going on and we ought to provide some leadership and be involved, that seems good. Endorsing the idea is a little different.
DR. DEERING: It could be that it becomes, that we take what is currently the last sentence and the beginning of that sentence becomes the first sentence of this bullet. Several private sector efforts are exploring and working in, and then an explanation of what these efforts are. We recommend, given the potential of this issue to be beneficial or counterproductive depending on its outcome we recommend that HHS leadership could be valuable in focusing, refining and supporting --
DR. COHN: I guess the other question is is the word leadership the right word here, because do we want, we’d want HHS participation I think is probably the operant, because we don’t know what they’d be leading towards. Is that okay? I mean I’m seeing others, I mean this is obviously still draft, we’re not going to vote on it tomorrow --
DR. STEINDEL: I agree with the thrust of the way we’re changing it, it’s much better then the original, I’m just, I would have to see wording because I’m not sure if this, at the stage the effort is right now do we want this to be an HHS effort or do we still want it at the level of the various agencies participating?
DR. DEERING: I’m sorry but I don’t understand what you’re saying, AHRQ is an HHS agency --
DR. STEINDEL: No, I mean that, but there’s --
DR. DEERING: So is CDC the last time --
DR. STEINDEL: No, there is a subtle difference that’s emerging right now between HHS level participation and the optives(?) participating.
MS. FYFFE: It’s more then subtle.
DR. STEINDEL: I use the word very --
DR. COHN: So what we should say is HHS --
DR. DEERING: The participation of HHS agencies?
DR. COHN: HHS or its respective agencies.
DR. STEINDEL: Something like that. I don’t think this effort is mature enough that we have focus at the Department level.
DR. ORTIZ: I agree, I don’t think it is at this point and I don’t know if we necessarily need to take a position of endorsing or advocating but I do know that it’s going on and I think that we could definitely provide guidance, feedback, react to, follow what’s going on, because I’ve seen this thing kind of evolve from initially starting off with this kind of minimal dataset, five things that, Stan’s right, I mean ideally you’d want everything captured but in reality what they’re saying is there’s a lot of places out there that don’t have this capability, can we start off with five things that my God, if you could get those five things into every provider’s hands, it’s something very doable in a very permissive form, medications, problem list, etc., etc., but the CCR then has kind of expanded beyond that and now it’s not five things or 20, it’s like 30 or 40 things and then you’re getting close to an EMR anyway, so what’s the difference. And the thing I’d like to just make sure is that that doesn’t become somehow kind of snowball into some standard that is kind of misguided, and not necessarily that we take the leadership role but that at least we are kind of keeping track and providing input and there’s ways we do it anyway because we’re involved in the meetings but maybe kind of taking an NCVHS role in terms of reacting to it and things like that.
DR. FITZMAURICE: I agree with the editorial but it sounds like we’re begging the first question, is this a good idea to have a minimal personal health information document or is it not? Stan would like to have everything and so would I, is this a good first step or is it not a good first step? If it’s not a good first step then is there sense in us being involved with it? Yeah, probably there is, but is it something we want to come out and say there ought to be a minimum personal health information set, that’s still debatable I think.
DR. COHN: You know I think the other issue is if you look at the introductory sentence to these two bullets these are two actions that can jump start the development and deployment of effective personal health records, so obviously we’re giving this, I mean this may be overstating where we are intent, I mean what we’re trying to do is have HHS track what’s going on and participate, it’s certainly not one of the two items that would jump start everything.
MS. FYFFE: It’s the opposite of jump start.
DR. FITZMAURICE: I don’t know, that sounds strong enough to me because, it sounds accurate because you want to have a dataset of some kind and then you want to have some way to get it into the hands of the patient, I mean whether you’re talking about a personal health record or whatever, minimum dataset, unless there’s a mechanism for transmitting that to the patient, even on a piece of paper, you don’t have the mechanism, the infrastructure to do it. So this could jump start the development of that infrastructure as a sheet of paper.
DR. DEERING: The only reason that, another reason that introductory sentence is important is that it emphasizes, and this is again what I got out from rereading John’s summation in the transcript, the focus here number one is on the personal health dimension, this is not the NHII overall, this whole letter and these recommendations are supposed to be emphasizing the personal health dimension and then we did begin to focus on personal health records in our August 7th meeting and I think these two action items came out of the discussion of exploring, developing, promoting, enhancing, building the personal health record and the personal health dimension as opposed to the full NHII. That was certain the genesis.
DR. COHN: Well, obviously I can’t speak for John but we were all here at the last meeting, I’d say looking at this one I think the first bullet is an important one, it really could jump start and help things. The second is a recommendation but I don’t think quite on the same level as any sort of major jump start activities. As I said we’re dumbing this one down and just have to reflect on, I mean do we want to give it that much emphasis.
MR. BLAIR: Are we at the level where we’re actually wordsmithing this letter at this point? I thought Mary Jo was just bringing this up for our thought and consideration, to look at it.
DR. COHN: I think you’re right, you’re not bringing it forward tomorrow for vote.
DR. DEERING: Oh no, no, this was never intended to go forward tomorrow, this was definitely at a discussion. I would like to agree with Simon in that, and I think that Mike, all of the feds at the table will agree with me, certainly the previous letter that we just dealt with where we are saying very strongly we need more federal agencies at the table and we recommend stronger HHS participation, that’s an appropriate strong affirmative concrete recommendation. But given our sense of where this movement is at I suspect we’re never going to come close to that level of recommendation in which case I think it’s almost a non-starter, it’s not the sort of thing that you’d put in this letter. It might perhaps go into the narrative section but the fact is HHS agencies are going to be continuing to monitor that, there’s nothing that the Secretary is going to do to tell them to do more then they are doing. AHRQ is tracking it, you’re hosting the meeting, so I think Steve is aware of what’s going on, they don’t, you don’t need Secretarial permission or encouragement to do that, your agency heads are telling you to do it, so in other words there’s no value and no need for the second bullet in the form of a recommendation at least in my observation. Are the feds nodding their heads, can we say around the table?
DR. FITZMAURICE: Not exactly, I think it’s good have leadership saying here’s something at a minimum that the patient should have.
DR. ORTIZ: And I do know that, even the CCR efforts, it’s controversial and last time they had the meeting HL7 came in and disagreed with a lot of stuff they were saying and they basically said well, basically blew them off and said well we don’t really care what you say. And so I think there is a need for some leadership, now whether or not we want to be involved in that and providing that leadership, I think there definitely, somebody should be getting involved in this to making sure it goes in the right direction but maybe that’s not our role and we don’t want to do that.
DR. STEINDEL: I agree with both points, the agencies are going ahead with the process but it also helps to have the point made that the process is going on and HHS as a whole needs to be aware of it, needs to be tracking it. And if necessary provide some leadership in the area depending on how it is going.
MS. WILLIAMSON: -- that we do need to monitor the effort but we really have to make a decision on whether we want to be involved in this and at what level we want to be involved, I mean we know we need to be a part of it, we need to be a part of what’s going on in developing this, but as you said, do we want to take the leadership in that role. And if not, then what do we expect? Do we leave it open to the others to take the leadership and make a decision in developing this core dataset that we may not agree with? That’s something to consider.
DR. STEINDEL: We also have to realize we have mechanisms within HHS to move this forward as an HHS entity that have not really been used for this effort, the Data Council and CAHIT.
DR. DEERING: I would have thought that CHI and/or, getting back to NCVHS, is this something that perhaps the workgroup feels is so important that we want to have some hearings on after the next round of CCR meetings and HL7 or something, do we feel that it’s something that the committee needs to be monitoring to get closer to a specific recommendation?
DR. COHN: I think I’ll speak for John recognizing, I think he has a meeting next week where he may have a better sense of some of that, I suspect he was trying to defer some of these issues until he had a chance to see where Markle was and others in relationship to this. And I’m obviously surmising but that was sort of the sense of why he was trying to delay the letter.
DR. ORTIZ: It sounds like just today that it’s not just how this is done but whether this is even worth doing, that we’re not quite sure yet. As Stan pointed out, ideally there’s a different way to do this but in the real world right now that’s not what’s happening and is this something that if you had this thing that basically everybody had to get, what would that provide in terms of benefit to patient care and patient safety, etc., if there was this thing that in paper form or electronic form where everything, this five or ten data elements, but maybe it turns out that because we’re eventually working towards a kind of comprehensive EMR system this might be something that might derail those efforts, does it provide benefit now, I mean it’s one of those things you always, the Don Berwick comment, you can do a few good things now or everything never. Is this something good that should be done now because it’s something doable that will provide a certain amount of benefit for everybody? Or is this not worth doing? And I think we haven’t answered that question yet.
DR. FITZMAURICE: I think you’re right, I think I fall in the side of a minimum personal health information is worth doing because I’d like to see at least the list of meds that my kids are on, that my parents are on, that everybody is on, but I’m not ready to commit to any one particular group. Even the CCR, I would advocate we host meetings, we get involved, we find out, but reserve judgment on whether as something we support that effort or not. But getting a minimum personal health information set, I would support that, and I can tell you what information I would like.
DR. COHN: You know Eduardo as you bring this up I just sort of mention this as sort of something I pointed out to Jeff recently. The Medicare reform legislation, and I don’t know if it’s going to go anywhere, is potentially a whole e-prescribing section that started out as a standards motion piece and appears to be migrating into all physicians will have the ability to, will be required, at least potentially, to e-prescribe by late this decade. And if you start looking at the data elements that are being mandated for being transferred around and about with the prescription, I’m actually not sure that it’s necessarily so different from the minimum dataset, it’s maybe something we should look at. I mean I’m just saying that well you might as well, rather then have something completely separate maybe we ought to be looking at things that are actually going on now or potentially could be going on.
DR. ORTIZ: And the other thing is that I think this plays in, there are a lot of these national efforts going on with, CMS has several projects, the DOQIT project, Doctor’s Office Quality IT Project, there’s some kind of performance management project similar, there’s the Bridges to Excellence program, there’s the AAFP doing some stuff, so there’s a lot of initiatives going on out there that potentially could be either testing grounds for this kind of stuff or they could be implementing this, and it may be nice to bring some of those guys in to know what’s going on and also to get some reaction and input from those guys. So it sounds like there is enough stuff here to hold some hearings on this.
MR. BLAIR: The only other thing that I was thinking of is right now this is coming up from the CCR concept, it’s coming up through the NHII Workgroup, the thing that I’m thinking of Simon is the members of the Subcommittee on Standards and Security probably would be interested in this as well, although I guess most of us are here anyway, I mean most of the Subcommittee on Standards and Security are part of NHII.
DR. COHN: I think we just go from meeting to meeting as best I can tell. I think this whole area is obviously one that the NHII Workgroup wants to track pretty closely, whether it’s the minimum dataset or some other aspect, but potentially one of the issues is trying to figure out how all this intersects and what makes the most sense. If indeed there is going to be data that physicians and others are going to need to have electronically and others that are essentially that minimum dataset, it may make sense to not leverage that with the other things.
One more comment, I guess I’m trying, what I’d like to do is sort of finish up the meeting and let everybody go since I don’t think we’re going to be able to come to the action items from my chairing this session. Michelle?
MS. WILLIAMSON: I just think that the idea of having of hearings, just to reiterate that, is a great idea if we could get the feedback, but I still think that this group, it would be great after obtaining the recommendations and seeing what others are doing in their initiatives to maybe have a decision within this group as to what that subset should be. I mean we can still come up with our recommendations, if we hear what they’re doing at CCR, we hear what the different initiatives are doing. We may not agree that that is the core or the minimum personal health record information that needs to be there, so there’s still a role within this group, similar to what we’re doing with CHI, to look and say okay, this is what this group has adopted but we see it in a different stance.
DR. COHN: Okay, any final comments? Obviously Mary Jo you’ll be taking some notes and we’ll just talk to John. It sounds like there will be a conference call, I expect that John will set up sometime between now and our next meeting. Obviously the letter will be discussed, at that point maybe he’ll have a little more information that he can make some suggestions on on how we should be approaching all of this. Okay, everyone until 8:00 tomorrow is Privacy, 10:00 is Standards, 9:00 is Populations group, lots of meetings tomorrow morning. This meeting is adjourned.
[Whereupon at 6:05 p.m. the meeting was adjourned.]