[This Transcript is Unedited]
Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, D.C.
MR. BLAIR: I know that there's some folks that need to leave shortly, so may I ask if we could convene the NHII Task Force right away if it's possible? Are you all here? I can't see if I'm sitting in a room by myself. Ted, are you here? And Clem, you're with us? Is everyone here that is part of the Task Force, are we missing anybody?
Ted, I know you have to leave early, and I don't know exactly, did you have some things you wanted to specially brief us on, or just that you wanted to respond to the agenda for the 27th and 28th of January?
DR. SHORTLIFFE: It's partly the agenda and I just thought I would inform you briefly also about, the reason I have to leave is to go to a briefing at the National Academy about a report which I think will look great to this Committee, because it frequently quotes and points to the NHII Report. This was one of the, a very rapid report that was developed sort of outside the usual time course of IOM activities, but it was in response to a specific request by Secretary Thompson, actually I think back around May/June timeframe, for advice about rapidly implementable demonstration projects that the IOM would recommend.
The IOM convened a Committee and very rapidly went through a process to try to give him a set of possible demonstration activities. And at a press conference this evening the, it's actually something called the Rosenthal Lecture, will be used as the forum for announcing the results of this. Some of you may have seen advance copies, but it hasn't formally been released until today.
But it's a report that breaks down its recommendations into five categories of demonstration projects, of which one category is information and communication infrastructure, a paperless health care system is the sort of moniker that they attached to it. It points to many of the same things that we did in our working group report, it cites the working group report itself, and calls for significant new investment in demonstration projects in this area.
I might add that the other four areas, which briefly are chronic care demonstration projects, liability related primarily to malpractice, primary care, and one other, at any rate the others almost all have significant information technology components to them as well. In fact the chronic care one has to be done using significant information technology investment.
So of course now the challenge is for the Secretary to respond. But he seemed eager to do so at the time he asked for this report and we'll see what HHS is able to do, or the Congress is able to do to help facilitate HHS activities in this area. So I just thought it was good news and worth mentioning to you since it happens to be today.
MR. BLAIR: Next, I have another question, and Ted do you have any updated information about what the status of Nancy Johnson's bill is in the House?
DR. SHORTLIFFE: My understanding is that it's pretty much dead for this session. I guess it will go around again next year perhaps. We'll see.
MR. BLAIR: John Lumpkin, are you on the phone? Not yet. Are we trying to contact him? What is our status of trying to bring John in with us?
DR. DEERING: He has the dial in number, Jeff, and if he was able to join us he was simply going to dial in. There's nothing that we need to do or can do to flag him down.
MR. BLAIR: Well then, let me convene the session and Mary Jo has pulled together for us an excellent draft of the agenda for the hearings that we will have on January 27th and 28th in Albuquerque, New Mexico. Why is everybody laughing? In any event, Mary Jo can I ask you to lead us through both that agenda as well as you also have I think on topics for us some of the other sessions during the first half of this next year as well?
DR. DEERING: Thank you very much, Jeff. I think the business of today is to take a look at the straw man outline that we put together for the 27th and 28th to see if we can either lock in some names, confirm the direction, and send the staff off with instructions so we can begin making the invitations. Thanks to all the staff, Steve and Michelle and Eduardo Ortiz and Bill Yasnoff have all done wonderful jobs in pulling all of this together.
We had also not yet scheduled, but talked about, having a second set of hearings on what would be more focused on the population health dimension, the January hearings being mostly on the personal health dimension and health in the NHII. So staff, again Steve and Michelle, have done a wonderful job of putting together a straw man list of topics and ideas that I didn't share with you in advance because I didn't want to distract you too much but, I have hard copies of that and depending on the time I will certainly hand that out and/or email it to you, and then we can get feedback perhaps during a conference call. Those are the principle items that we need to go through. How many of you have had a chance to look at this document? How many of you would like to offer any observations? Or shall we perhaps just take it step by step through the panels in order?
MR. BLAIR: Actually there is one comment that I might ask. The title of the first panel, when I looked at the title of the first panel, and I looked at the testifiers, it looked to me as if the first panel and the second panel titles might have been reversed. I think the title of the first one was health care issues with respect to the NHII and it looked to me as if the testifiers in the second panel were addressing that whereas the technology issues and how it relates to a national information infrastructure really was the folks, did I miss something here?
DR. DEERING: I think I'll turn it over, I think it's partly just a matter of formatting here. The first two panels are both on health and the NHII, and then there's two sub-panels that Ted can talk about.
DR. SHORTLIFFE: I worked with Bill Yasnoff on coming up with these proposals for names, etc., and I think the idea was to have one panel which was really not about health at all but laid, and that's the first one, to lay the groundwork of what's going on with the internet itself, by first getting a talk about the commodity internet and its current status and evolution. If we could get him, Vint Cerf, since he's local just might do it, and I think also knows enough about the health implications that he could refer to them. Doug Van Houweling, who is the head of UCAID, University Consortium for Advanced Internet Development, which is essentially the parent organization now that the academic community has put together for Internet 2. And Abilene is the technology that's been used, this is the high-end non commodity internet that is available for connecting academic institutions to one another if they are members of Internet 2 and UCAID.
DR. MCDONALD: And headquartered in Indianapolis by the way.
DR. SHORTLIFFE: I thought it was out of Michigan actually.
MR. BLAIR: Ted, since you were part of pulling this together, I have a question. Because when I looked at those I thought there's outstanding testimony in both panels and I think that we really want both panels. My question is that I would have thought, you tell me if you think there's other aspects to this or you don't agree with this, I would have thought we would have looked at future applications in health care first and then have the panel that shows us the technology's that we might use to enable them.
DR. SHORTLIFFE: One of the reasons I downplayed that is that I personally, before I was on NCVHS, testified before this Committee about the results of our NRC Report called Networking Health, which is about the future of the internet and health care. So admittedly there's been turnover in membership, but we did have a whole session just on that sort of future looking motivation for our need to care about this topic.
The reason for not putting health first is that the whole point of the second panel, which I was getting to, is to try to look at the way in which internet, from a policy perspective, is evolving and what role health care could play in that process. Because right now it's playing almost none. So Bill suggested that I sort of set the tone with maybe ten minutes at the beginning to just recapitulate some of those recommendations and observations from the NRC Report, which is about 18 months old now, or two years now, although I don't think a lot has changed in that regard.
And then we would have these people, all of whom can talk about the way in which the internet essentially is run if you will. Of course it's run in a very haphazard way, but there are these internet engineering task forces, there's the internet society, and there are interagency cooperative groups within the federal government, and the folks that we have suggested for the second panel can talk about frankly wouldn't it be nice if health care got involved or if the health component of the federal government got more involved in what we're doing. That is, so I can explain who these people are and why I think they'd be appropriate for that if you'd like.
The first panel ends with the guy, with one of the folks from the NSF who are in charge of the next generation internet program there and I'm not sure which of them would be available but if any one of then could do it they could talk about the NGI research initiatives, which are largely being directed out of NSF, although other agencies are also funding research under the next generation internet program.
So that would, that first session then if it was Vint Cerf, Doug Van Houweling and Aubrey Bush, we'd really be, what's happening now with the commodity internet, with internet 2, and where are we headed with the next generation internet and it's research program.
That's going to tell us what's happening, but it's also going to point out that what's happening is happening because of other entities besides us, and has essentially no engagement of the health care community beyond a very low level of participation.
And then panel two, if I give a brief reminder then of why health should care and get involved in this at the beginning, then we were suggesting that the two people that run the interagency activities and large scale networking, mainly Dan Hitchcock from the Department of Energy and then George Strawn or Peter Freeman from NSF, and those are the two co-chairs of that activity, they can talk about what the interagency activities in the internet right now and also what the existing and potential involvement of the health community or the health care agencies might be in their ongoing activities. They always espouse strong interest in getting more health care involvement and I think it would be good to get them here explaining why, what is happening and what could happen in the way of engaging more health care involvement.
And then if we could get Bob Kahn to come as well, Bob has an interesting perspective because he's one of the internet pioneers. He with Vint Cerf are the two people that got the National Medal of Technology for their work in developing the internet 25, 30 years ago, but he's been on the Board of Regents at the National Library of Medicine, he's thought a lot about the way in which the health care, both research and delivery communities could be better leveraging the internet and he knows all the policy issues about the internet and its evolution and current task force activities, so I think he could also put it in good perspective.
And those four people, or those three people, perhaps with me moderating, I think could have essentially a panel discussion about what might be possible. And that was one of my goals in proposing this topic is to get people like that thinking with us about what role HHS and other health related agencies could play in internet planning and evolution, because this is still a young technology, and many of the capabilities that we're currently trying to make use of were created for reasons other than health care motivations. And we just sort of piggy-back at this stage on those activities.
MS. GIANINNI: One of the things I would like to do with the Committee if it's at all possible, is we're working with companies like Navamedics(?) who are doing internet connectivity between providers and payers. Malina Gianinni with Alternative Link. We're working with companies like Navamedics who are connecting providers with payers over the internet. I just thought it would be useful for companies like that to talk about how they would use data in code sets through the internet and what they do with it and how it's connected inside of the payers system, how it works with managed care contracts, and just little specific details.
It seems like the hospital industry and the insurance industry have a big disconnect on how they use data and that a clearinghouse might be a really good entity to pull in here because of the pieces of information you seem to keep asking for. Would that be helpful?
DR. SHORTLIFFE: I actually think it's a somewhat separate topic from what I've just been describing but it's certainly relevant for this workgroup. These two panels that I've been describing I think are really intended to talk about the internet as infrastructure and the way in which the scientific and engineering community are pushing the envelope on its capabilities and how the health care community might influence operationally the way in which decisions are made, design decisions are made. But this Workgroup should have lots of interest in a wide variety of potential applications and new uses of the internet and needs to understand the state of the art of the internet in health care, so I think the topic you raise is relevant but perhaps not for these sessions.
MS. GIANINNI: Excuse me for bumping in right there.
PARTICIPANT: But it does sound as if it may be pertinent to panel five, linking personal health information, we could explore and see if they were doing something in that avenue.
DR. DEERING: I had a question that I think came up Ted early in our discussions, which is you really, why hasn't this happened better in the past? The opportunities have been there, there has been some involvement and really its fallen far short of what the optimum is. Can you put your finger on what the barriers are to getting the kind of health involvement that you're looking for and whether that would suggest something about what this Committee could do and what the hearings could do to actually get to your end result?
DR. SHORTLIFFE: Well, I think our report talked about a kind of mindset or perspective that wasn't represented too well in the Department right now. Perhaps these kind of hearings and suggestions that would come up from talking with folks of this sort would allow us to write additional materials, letters, etc., that would help sort of raise that consciousness even further. I will tell you that the reason that the other agencies are as active as they are in this area is because at the highest levels of those agencies there is recognition that the internet is a key intrinsic part of their future and they want to be involved in it, they want to invest in it, and they want to support research in it, and they want to make sure that it sort of evolves without them having a say in the way it moves.
This is not to say that the federal government runs the internet, heaven knows that the internet is well beyond that by now. But research and networking and the ways and the mechanisms by which the internet evolves and new technologies get incorporated into the infrastructure does have a lot of input from both the federal government and from scientists who are supported by federal grants and the like. And HHS has simply been quiet all along and not because they've been kept out as much as because they haven't really fought to get in, and I think we need to understand that, try to frankly see what we can do to articulate this in ways that it will become absolutely obvious to everyone as this report sort of points out, too, that the internet is to a large extent a key part of the future of health care and it is crucial for HHS to recognize that and be intimately involved in the way it evolves.
DR. DEERING: Just to follow-up for one moment, I think the reason that the staff were mulling that over and when we were thinking about it originally, was whether or not these hearings provided any opportunity to get some of the very specific HHS and non-HHS people to the table, who you think, in your heart of hearts, ought to be hearing this in real time.
DR. SHORTLIFFE: You mean add one of them to each of the panels or something?
DR. DEERING: Absolutely. No really, for example, someone who's been missing, who's got lots of money and is looking at informatics is NCI. They are generally absent from a lot of what this Committee does. And one of our outreaches has been to say what are you doing, don't you need to know, you've got the money to spend to back it up, not at the NIH level, but at the agency level, they have the independence and the autonomy to do maybe and to get engaged at the level that you might want, that could be valuable, so I just leave that on the table as a possibility.
DR. SHORTLIFFE: On the research side, it's unlikely that NCI would become the HHS emissary to the interagency workgroups on the internet and its future. That I think has to come out of this building, so if we're going to think in those terms we need to think of who from this building needs to be involved. I remember that for that NRC report, we actually spent what might have been a painful hour with, not for us but for the then head of ASPE, who basically just never thought about this before. That's the kind of level in HHS that I think needs to hear about, think about, and then ask the question what do we need to do to get involved. Now the creation of a new position in ASPE in this general area is a step in the right direction, and maybe we can help provide support for that position and those activities.
MR. BLAIR: Two questions. Number one, do we need to build into the agenda on the very first day, the first item of the agenda, some time for you Ted and Bill Yasnoff to not only give us a perspective but maybe also bring us up to date on some of the initiatives you and Bill might be working with? And if so, how much time do you think you and Bill would need?
DR. SHORTLIFFE: Well, you've got me in the agenda now just to do the NRC Report summary and I didn't think any more than 10 minutes would be necessary for that, even less if necessary.
MR. BLAIR: Is Bill here?
DR. SHORTLIFFE: Bill is not here, he had to go to the West Coast, but I think Bill could talk about his new position at the beginning of the day and a little bit about the initiatives he already has underway. We could ask him what's your budget, and how many people do you have on your staff, and things like that, and we'll see if there are areas for future work when we get the answers to those questions.
MR. BLAIR: The other thing is that normally you notice when we have these meetings, on the second day people get on planes and take off, including those of us from the Rocky Mountains or the West Coast. However, this NHII meeting, taskforce meeting, in January, is going to be followed by the Subcommittee on Standards and Security, so I would like to ask all of you whether we should be opportunists and schedule time on the afternoon of the second day to discuss what we've heard during those six panels and come up with observations and conclusions. Can we work, can we schedule discussion time until 3:00 or 4:00 on the second day? Comments, thoughts? I don't hear any objections.
DR. SHORTLIFFE: Because the first two panels are a little from the others, and because I already know that I can't be here on the second day, if you were going to do that, I'd be delighted if you could do the discussion of the first two panels after them on the first day, and consider then starting the third panel if there's time to work that into the schedule.
MR. BLAIR: Maybe Mary Jo you could, since it seems like everybody, or not everybody, Ted would miss.
DR. DEERING: John had mentioned exactly that notion of Workgroup discussion after the close of all of the panels, but I think what we're hoping is that there is ample time there for discussion about that, we'd want to lock in whatever the take home messages are from those two panels right on the spot. I think the others flow together, the two that were tentatively scheduled in the afternoon flow together very nicely and we probably want to lock in a little bit of discussion around those. And then perhaps have more comprehensive discussion, whether or not everyone can be there, after the last two panels the next day. John had certainly raised that as a possibility.
DR. MCDONALD: We always in the projects we're trying to do in terms of health care and internet, where we always get stuck, and I think everyone in the universe gets stuck, is you don't have universal email with encryption, that is you can do your own private email, and the other one is the authentication, so if someone is given their record and access to their record in all these different places, or even doctors, which is fewer numbers, but these are also broad internet issues.
DR. SHORTLIFFE: They are, although I think our authentication requirements and our requirements for encrypted email especially since HIPAA, go way beyond what most other communities are thinking about. And we can be drivers in those areas on the technology development, it's just not nearly the same priority for --
DR. MCDONALD: But even like, even SSL, SSL you get screwed up, you go to a different frame it gives you errors, I mean there's some --
DR. SHORTLIFFE: There's some messages you don't have the right certificates.
DR. MCDONALD: Yes, but these are dumb little things that are just stopping, I mean are really hard to get past, and getting attention of the internet side of this might be --
DR. SHORTLIFFE: These are people who know all about that stuff. If we could get these folks engaged and interested in the health care side of this I think we could, even that is a reason for having these panels.
DR. MCDONALD: I'm almost wondering if those questions could be raised in that context of the general internet rather than wait until the end, the medical side where you're going to --
DR. SHORTLIFFE: Oh, yes, when we invite these people for the first panel we will ask them to be thinking a little bit about the needs of our community and we could point out some of those examples. I thought, I've got a little stack of those NRC Reports we could send them to all these people to have them flip through what the health care issues are.
DR. MCDONALD: SSL a secure socket layer for people when they're not familiar with that.
MS. GREENBERG: Jeff, let me just say there's, this is Marjorie, remember me? On the subject we were discussing --
MR. BLAIR: Is it relevant to the subject?
MS. GREENBERG: I can say that it really is my strong preference that you do build time into these agenda for discussion because I think that first of all, we have the members here, and if we completely fill the time with presentations and then go off, I think you lose a lot. I know certainly with like the Privacy hearings, because they decided they wanted to do a letter initially after the first hearing, that was an opportunity to process what we got out of that hearing, and then of course the third hearing we processed everything. We can do conference calls, etc., but I think that we should maximize the time so I would encourage you, for the reasons you mentioned, but just in general to think in terms of leaving discussion time.
We've all put you on the Committee for your expertise and yes we want to hear from others on the outside, but you really need time to process and discuss as well, so I would encourage you, however you might want to do it, it sounds like maybe doing it in chunks would make more sense, but given the next meeting, but I definitely encourage that. And often not to save it until the end because you lose people at the end.
DR. SHORTLIFFE: Also, I want to be sure that we save time sort of within the panels for discussion, not only a separate session among ourselves, but these are people who I think on the spur of the moment properly juiced by the topic could be very forthcoming and helpful if we can get them. Who knows? These are people in high demand.
MS. GREENBERG: I think we agreed even for the full Committee maybe to have fewer people and more time for discussion in general.
MR. BLAIR: Mary Jo, did you want to take us through?
DR. DEERING: Well again, I don't know if the person would like to speak to this issue or not.
MS. BICKFORD: Carole Bickford, American Nurses Association, I have two questions. One, in light of the AIMIO(?) conference and the significant focus on bio- informatics, will that be part of the thrust of the testimony that you're going to be having with the requirements for the high speed transfer, the genetics research and that sort of things? And secondly, I wanted to know if anyone will be attending from the Joint Working Group for Telehealth? Deanna Pushkins' work where she had brought together Department of Education, Justice, DOD, DHHS, in looking at the issues surrounding the telehealth strategies and the funding and the grants and those sorts of things, so the lessons learned may already have been somewhat resolved in that arena so I'm just raising that as another question.
DR. SHORTLIFFE: Well, I do think that the telehealth community and Deanna Pushkins' group and others who do tele-medicine, especially Hiban(?) with requiring tele-medicine or high quality of service tele-medicine, are going to be interested in this discussion and certainly should be invited to be here.
Again, I think that that topic is a great topic for us to pursue as a topic, a little bit, this is meant to sort of set the groundwork in a way for what I would hope our Workgroup would have as future panels that address issues related to how health care delivery and biomedical research in areas like bio-informatics are either being constrained by the current state of the internet, being forced into more expensive alternate means of communication, like ISDN lines, when if you could only move it to the internet, you'd save a huge amount of money. Those kinds of issues are I think well recognized and they put some very interesting stresses on the internet of today, especially the commodity internet.
So I think for us to understand that and be able to talk about it intelligently and write reports back to, or report back to the full Committee on those issues is an important part of what the Workgroup is about.
DR. SONDIK: Can I make a comment? Ed Sondik. One of the purposes of this is to get the Department engaged and you're nodding your head yes. And I think in order to do that, I think it's important to have as much vision in this as possible, so that people see some things that they can understand, they realize how important the technology is to realizing those visions, and its kind of a take away message, particularly if some officials from the Department can actually be there. There's nothing like actually hearing some of this testimony to really start your juices flowing and say this is really something that we can, it's a path that we actually have to follow. And certainly some of the people who are in the middle of health and internet and computer related applications, could do that.
On the other hand, they also might be very much, might be too technical if you will, and I think trying to do what the NHII document itself does and other reports have done, which is to stimulate a sense that there are real tangible gains from here in this, not only in health, which we would all hope, but also in industry related to health in the cost side in international cooperation, in doing things in very different ways, conducting studies in entirely different ways, than we can do it now, that sort of thing, I think could really turn people on. So as much as that can be fit into this, the better, particularly if we could somebody --
DR. SHORTLIFFE: I see a third panel but I'm not sure we're going to have time for that on that day.
DR. SONDIK: But even in the panels that are there --
DR. SHORTLIFFE: These fellows, I mean several of them are clearly visionaries. Vint Cerf is certainly the ultimate visionary. So now the question is health care visionaries in a sense that can really engage and excite an audience in a non-technical way about what's possible. So let us think a little about whether that means adding speakers or instructing these speakers to think creatively about how to do that.
DR. DEERING: It could also be that you speak at the beginning of the first panel as opposed to waiting until the second because I think that setting that framework up would be good for the audience. And I'm also making a note that this is one set of hearings where we actually, the invitation list for the audience is as important I think for the invitation list for the speakers. So I encourage all of you to submit to staff a list of people within HHS, lists of people in industry organizations, lists of people in industry, whoever you think ought to be hearing this, and we will make sure that they are invited to attend and listen. So at least that way you get a dialogue or at least a multi-directional listening session. Any other comments on this particular set of panels? Excellent, thank you very much.
The next two panels both look at the notion of the personal health record minimum data set. And all of those words are both more and less helpful than we would like. To remind you where this came from, our July hearing in Chicago had testimony from several people on the personal health record and on a variety of issues pertinent to the development of a personal health record or the sharing of personal information across multiple platforms, etc., and the Workgroup was quite intrigued with the notion that came out of there that perhaps there was a particular set of content areas, data elements, that could be pursued both as important in and of themselves, and also for tactical purposes, to help providers, patients and privacy advocates all understand that there is information that is not proprietary and that there is no value in sharing. And the Markle Committee, on the Markle Connecting for Health Initiative, has a committee on the personal health record that is very interested in this issue and has reached out to the NHII Workgroup to say we would like to let you know what we're interested in and the activities that we're going to undertake and we'd like to know how we can be helpful to you and vice versa.
So the first panel in particular sets up the notion of what do we mean here by the personal health record and a minimum data set, what could it accomplish, what are the views, how is it regarded by people. And because again, David Lansky who is the chair of the Markle Committee on the personal health record is undertaking some very specific activities both within his organization and through his workgroup to explore these issues, what we are proposing is the following panel of speakers.
David himself would be very able to talk about how they are looking at both the content of the personal health record more broadly and on the notion of this minimum data set. They are going to be undertaking some qualitative and quantitative research themselves around the notion of the personal health record, some of which would look at this issue of a minimum data set, and he would be happy to speak to what it is they're doing and where they're going.
Phil Marshall, who did testify last July and was the person who sort of sparked our interest in this last summer, has put together a straw man set so that people can just get a feel for what are we talking about here, where is this going, what would we need to be looking at, and he'd be happy to talk about that.
The other panelists are more in the line of suggestions, Joy Keeler I believe many of you know because I think she won the Davies Award one year, and I had a conversation with her a couple of weeks ago, looking at what they are already doing and asking her about next steps. And she launched into a very impassioned discussion of the work that they have underway to make this patient centered, to create a patient centered health record and to move their fairly sophisticated and well established system towards a patient centered and patient controlled system. So she is one possible speaker to talk about why they think something like this is important.
I actually may have to scratch the fourth panelist. Lee Rainie has spoken to us before, again Pew Internet and the American Life Project have ongoing surveys in the field around issues related to health and the internet. They are very happy to work with the Markle Committee and with the NHII Workgroup to put at our disposal their survey apparatus to undertake whatever is appropriate to public soundings around any issues related to the personal health record that we would like to give to them. And we've already had a couple of conversations bringing in Pew and Markle together and their research methodology people to ask what are the questions that we really need to be asking about the public's attitude towards this? And it just turns out that Pew won't be able to go in the field early enough to have any findings for us in January, they would be going into the field in February, but we would be able to talk about sort of the research agenda, about exploring what are the public attitudes towards personal health records.
Joy Pritts is in the privacy advocacy community, she's also on the Markle Subcommittee on Privacy. She is very interested in this notion of is there a subset of information that it might be perhaps easier to move forward through the privacy minefields than the whole thing so to speak, the entire medical history of an individual. So she would be willing to discuss how the privacy community would view something like this as a first step towards the sharing of personal health information if we wanted here.
So I'll leave that panel on the table for now and then open it up for comments or discussion. Is this the direction that people think would be interesting or helpful?
MR. BLAIR: I don't know many of the individuals but the questions appeared relevant, the topic appears, one of our major three topics, population, provider and personal, so I felt comfortable with the direction that your heading in setting up the panel.
DR. DEERING: Any other comments or suggestions?
Ok, moving on to the next panel would be again on the minimum data set but standards issues, not only for the minimum data set but ultimately for any personal health record.
MR. BLAIR: Actually I do, can I go back on the last one? One of the things that had come to my attention was that the idea of an open source electronic health record, and is that what David Kibbe or Joy Keeler would be presenting?
DR. DEERING: Is that what we had David Kibbe in mind for?
MS. WILLIAMSON: We have David Kibbe for linking individuals to their personal health information, hoping to get a perspective of what the American Academy of Family Physicians is doing, they did a study several years ago on patient access to information. Actually they looked at several vendors, and that was a component of it, so we're hoping to get their perspective on that.
DR. DEERING: I think Jeff's point is that David is really one of the leaders of that open source effort.
MS. WILLIAMSON: Well that was one of the comments that Eduardo had made, that if we want to put him in this panel, that we're not asking him to address the open source issues.
DR. DEERING: The Workgroup would like, or we could give him a twofer. Would the Workgroup like, Jeff would you like to have him on the --
MR. BLAIR: I don't want to preclude it, but let me kind of, if I have a bias or prejudice I get it out right on top. One of the things that I feel with the direction we've taken both with PMRI standards and with the NHII is that we're looking to provide standards that enable and facilitate a health care delivery system which can grow and change and innovate and respond, and use the new technologies, and I do get concerned, and I'm not saying this from the standpoint of we should not have him testify, but I do get concerned when folks look at standardizing software functions, like an HER system, and saying that would be open source, free, a national standard.
I get concerned about it because I think of software applications as those are the areas that have to be free to change and grow and respond, that to me is not where we would have standards, we would have standards for interoperability, and data comparability, syntax, semantics, so I have this concern so I'm mentioning it in case it bears on the way you pull together the panels and if you feel as if it's still appropriate and relevant for them to present the concept of a standardized electronic health record system, then that's fine.
DR. DEERING: The one thing that we might consider is putting that off because, and putting it in a broader context. We had initially thought that this would focus exclusively on the personal health dimension. I mean that was a choice of the Workgroup early on, and to the extent it's my understanding that the AFP open source effort is largely for EMR's, it's for clinical records, not necessarily having any open, any elements open, that are necessarily related to consumer patient records, but again I don't know the direction that they're going.
We can do it one of two ways to be sure that it's framed properly and gets at your concerns and I think Clem has voiced those concerns, I think other Workgroup members --
MR. BLAIR: Clem, are you here?
DR. DEERING: No, he left. At least I think I saw him chime in on an email somewhere endorsing sort of your concerns. On the other hand I think there are other Workgroup members who I think have said yes, this is interesting, maybe we should learn more about it. So maybe what we need to do, and this might be of interest to the whole, to the Standards, to the other Subcommittees, and maybe this is something that we would want to discuss in some other context, or have a panel where that could be one presentation with other elements. I'm trying to figure out what would be most helpful for the widest number of people. One way or the other you would like it not as stand alone presentation.
MR. BLAIR: I just expressed my concern and I figured that you can fold it into the agenda in a manner that's appropriate.
MS. WILLIAMSON: It seems if we're looking towards having more people address open source as compared to the minimum data set --
DR. DEERING: That's a different topic actually.
MS. WILLIAMSON: Well, if I'm understanding you're saying David Kibbe and others can address open source.
MR. BLAIR: Well, it isn't the concept of open source that concerns, and it isn't the concept of having development an EMR that's for free that concerns me. My only concern is whether the direction for the NHII and for NCVHS recommendations for PMRI standards, whether we should get into the business of indicating that we're standardizing software functions, that's the issue, and I'm more than happy to listen to other views, we should do that, but at least as of this point I felt that that was not the constructive direction for us to go in.
DR. DEERING: It will certainly be something for the Committee perhaps to hear testimony from several viewpoints on that so that they could get a 360 degree communication and understand what the perspectives are and I don't believe that it would necessarily obligate the Committee to take a stand, it could be an information hearing to sort of air the issues.
MR. BLAIR: And that's fine.
MS. GREENBERG: Given that the Subcommittee, I think it's definitely crosses over NHII/Subcommittee on Standards and Security, given that they're meeting the next day, but I think you already have enough panels, you could have a panel, but just kind of like maybe take advantage of David being here, but you've got a panel at the end of the day, maybe some people would, from the Subcommittee on Standards and Security could also attend.
DR. DEERING: Are they meeting on the 28th or 29th? Standards and Security, I mean on the 27th and 28th.
MR. BLAIR: It would be the 29th and 39th.
MS. GREENBERG: They're meeting on the 29th and 30th. But that may not work.
DR. DEERING: One possibility is if you thought any of them would come in a day earlier we could potentially move what are current panels three and four to the next day, and move up panels five and six to the afternoon of Monday, if we thought that we could get anyone from the Standards and Security group to come in the night before, on the Tuesday afternoon. Right now this group is scheduled, although it still sounds to me like having that discussion has nothing to do with these current panels as I'm now hearing it. It's more putting together a separate panel and the only issue is when we can get David Kibbe.
MS. GREENBERG: Well, panels five and six are relevant to Standards and Security also. They're welcome to come in the day, well some of you are on both.
DR. DEERING: Well, Jeff let's see what we can do and maybe we can talk with them and see what they're thinking is.
Steve do you want to talk to the standards issues for panel four?
DR. STEINDEL: Not with Stan Huff here. Actually, this issue is a great, great concern and it has come up. One thing that we have noticed is that in establishing the personal health record, we have no standards on how to communicate information to or from it. The general presumption is that we might be using the standards that we're talking about for communicating in and out of the clinical record, but those standards may not be appropriate and they haven't been explored.
And so the purpose of this panel was to look at that question of what standards are needed for the personal health records and whether they do exist and if they don't exist, what we should put in the charge for their developments.
And what's interesting about this, we've been talking about this panel for about two months, at the last AMIA(?) meeting I was talking to Bob Dolan about this issue. And they're planning a big presentation at the HIMS meeting that they do every year, using HL7 and it's a very nice model for the NHII and I'd like us to try to preserve it as a test-bed for future tests of NHII type standards. But they are showing the population health dimension and the provider health dimension and the communications in those areas fully. But they are not showing anything with the personal health record and one of the main reasons is because there are no HL7 standards associated with that and their whole purpose is to demonstrate HL7 standards.
So the idea of this panel is to explore that issue. We've selected at this point three potential speakers. One is Ed Hammond, and we're asking him to wear his Markle Foundation hat because he's talked about this issue at Markle. And then two other speakers, one with a relationship to the Comprehensive Health Initiative, we've put Rob Kolodner into that slot. And the standards issues from the provider point of view and we slotted John Madison from Kaiser into that slot.
And the reasons those people are put into those slots, they may change some, is because the VA and Kaiser had a recent meeting about two or three weeks ago out in California to discuss general issues of linking their two systems. And one issue that was explored was the personal health dimension, and the lack of standards in that area, and issues associated with security, etc. So we would probably approach both groups and ask for appropriate speakers for this panel and also the last panel, where we have a VA speaker slotted in as well. Stan do you have anybody who might be appropriate or any comments on that?
DR. HUFF: I was thinking whether Paul Clayton might have something to contribute, because these are issues that Intermountain Health Care certainly, nobody else comes to mind readily, but I'll keep thinking about it.
DR. STEINDEL: Thank you.
DR. DEERING: Anything else? Any other discussion on that panel? Ok. I will introduce the next panel but I'm going to ask Michelle to talk a little bit about it and I'm going to start it by simply relaying some of John Lumpkins' descriptions of what he was trying to get at there.
The short hand for this is personal identifier, unique personal identifier, or no unique personal identifier, to be or not to be is the question. And so we thought we would try and assemble all in one panel. First of all what are the alternatives to a unique identifier, again talking not within any given system but the whole goal of the NHII is across providers and plans and settings and time and types of organizations even. So we thought we would experiment with some examples where people are actually doing this in the absence of a unique identifier. And then having someone give the opposing viewpoint, in the person of Ed Hammond, but Michelle would you take us through this?
MS. WILLIAMSON: We identified five potential topic areas, the first being as Mary Jo has already mentioned, MPI best practices and possibly alternatives, alternatives that have been used for unique identifiers. We talked about potential speakers being David Kibbe, which now I don't know if we'll keep him there, just to look at what they've done with the Family Physicians. We looked at a few state examples, Bob David from New York to tell us what they're doing at the Department of Health there, Jan Root from Utah Health Information Network. And we need to identify someone who can represent what California is doing with their unique identifier.
The second topic area, potential topic area is community health records. And Mary Jo I think this first one was one that you recommended, Diane Carr.
DR. DEERING: I actually think she probably isn't so good there because they do have a unique identifier system. But the, down under topic four, David Brailer of the CareScience, there is a pilot in Santa Barbara called the Santa Barbara County Care Data Exchange, and over 75 percent of all of their health care providers, including medical groups, hospitals, clinics, laboratories, pharmacies, payers, and other organizations, at the community level, are exchanging information using non-unique identifiers. So it did occur to me that if we're interested in pursing that that we could move him, that he would probably or someone from that project would be a good panelist on topic two.
MS. WILLIAMSON: Another thought is that these particular questions as we have for David Brailer about how an individuals information can be linked across multiple providers may be something that we want to address within the MPI panel within that section, so that many of them can address those same issues. I'm starting to think that maybe we don't need to separate them into a separate topic area, but maybe expand on what's going on with MPI as it addresses those issues for both that question and how individuals can collect or obtain personal information from multiple providers. They may interconnect.
Another potential speaker for community health records, we considered HealthKey Collaborate to get their feedback on what they're doing for community health and sharing information. How individuals can obtain and collect personal information from multiple providers? I want to see what's going on with Jim Cimino, I don't know if his patient access to clinical information systems whether it's really a good fit there or not, but we can explore what he's doing.
And then we discussed the possibility of looking at a few vendors to see what they're doing to develop systems that will meet this need for sharing and accessing patient information for the patient as well being able to access that information.
For the fourth panel on individuals information being linked across multiple providers, beside David Brailer we also talked about --
MR. BLAIR: Before you go on to the fourth, could I have a question? What is the title of that panel? Is it unique patient identifiers?
MS. WILLIAMSON: The title is linking individuals to their personal health information.
MR. BLAIR: That's a good title. I'd like to ask a little bit, what was it July 1999 when we had our hearings in Chicago about unique patient identifiers? And there were a number of individuals that felt as if that might be a threat to the privacy of their health records and of course there was a lot of publicity on CNN and New York Times and all. And at that time Vice President Gore went to Congress and there was this agreement that was crafted that we would not have additional hearings on unique patient identifiers until Congress passed legislation to protect the privacy of health records. Now I know we have a different administration and all but that probably wouldn't necessarily change the sensitivity of different parts of our population to just that phrase unique patient identifiers.
I would tell you right away that I don't have any objection at all to a unique patient identifier, matter of fact I feel like it would be something that would be very good for us to have, but I am respecting the sensitivity that there is out there on that plus the commitment that Al Gore made to Congress because Congress was concerned, so I think we should just be very sensitive to the titles of the presentations in that grouping so that people don't take a glance at the agenda and feel as if we are violating the agreement that was made.
MS. GREENBERG: Let me just say, I agree with your concerns that we should not probably be holding hearings on unique patient identifiers per se. I don't think a commitment was made, an agreement was made within the Committee, the Department, that it was not fruitful to continue these hearings, so we did not hold any more hearings. I don't believe a commitment was made that there wouldn't be any more hearings for the foreseeable future.
What congress has included in future appropriations is that the Department is not to spend any money on implementing a unique patient identifier without, until the issue has been agreed to or addressed or whatever by Congress as to whether there should be one. I don't think that means that we can't hear from people as to what are they doing to address the very real issue of linking information from different sources. And some of them might, and we know at the state level some of them, for maybe more limited purposes, but are using unique identifiers. Others are using these various forms of master patient indexes, etc. So I think this, and in particular, this is not talking in terms of others linking people's personal health information, but individuals being able to link up their own personal health information, so I think the way it's laid out is probably not, I can't say it's not problematic, but I don't feel that it's inconsistent with --
MR. BLAIR: Let me phrase my suggestion this way. That we should be careful to make sure the titles of those presentations is an accurate representation of what they're going to be speaking about, in the sense that the phrase unique patient identifier was a lightening rod and may still be a lightening rod and it may not be fair to us or may not be fair to the health care delivery systems, but I think it is something where a lot of the good work that we're trying to do with the National Health Information Infrastructure and Standards and moving towards a National Health Information Infrastructure could be derailed in an unfair unreasonable way because some people's fear about what a unique patient identifier might mean.
DR. DEERING: One of the things that that suggests to me is that we had really quite a smorgasbord of choices here on this panel anyway. And in the interest of accomplishing two things, number one making sure that we have we hope no more than maybe four people on this panel, possibly a maximum of five, but preferably four, and secondly that we're mindful of exactly what you have just raised. Ed Hammond will be there, we don't need to put him on the agenda. He will undoubtedly engage in dialogue and could be heard from in his own capacity if he wished. We don't need to hear about international experiences because those may be closer to the personal identifier.
The spirit of the others was exactly as Marjorie has said, is how can individuals link to their information, and all of these efforts were mindful of the prohibition against unique personal identifiers and they were good faith efforts to say what can we do and are there alternatives.
MS. WILLIAMSON: What are the alternatives and what have you done?
DR. DEERING: So I think if we stick to four speakers and make sure that as you've suggested we're very clear about the topics of their presentation and what they actually say then we can probably get there.
Does anyone have any strong, any suggestions or among the various possibilities that we've put out, do any of these strike you as particularly good? Are there people who are missing from there who might be able to speak to these issues?
So we'll just chew on them a little bit more and do our best. Thank you very much Michelle.
The last panel is again at the request of the Workgroup was on authentication. This, too, sort of came up in our more recent July hearings in Chicago, why is July always in Chicago, why can't we go some place better in July? Where again, we heard intriguingly from at least a couple of our speakers differing approaches to at least patients attitudes towards authentication, so Steve do you want to talk a little bit about what this panel would do?
DR. STEINDEL: Yes, we heard from one of the presenters that was running a personal health record project in Minnesota that they had introduced a strong authentication system for their personal health record and the users of that personal health record went to a weaker password authentication system because they didn't want to use it. We heard similar comments but not quite as precise from Seattle. And this got us to thinking about the authentication issue on the personal health record and so we decided to explore what the needs are there because this could serve as a barrier to introduce it.
One thing that came to mind as we were thinking about this is the banking industry has actually faced this problem, because they're introducing electronic banking, I'm sure many people in this room use electronic banking. And the type of authentication procedures that they're using for that system. So one speaker that we've identified and I've got the contact name, this is at FDIC and we will probably invite him, but whether he shows up depends on the agency. But to talk about what the banking industry is doing.
And the one thing that we did observe with the personal health record is we actually viewed two levels of authentication that's required. One level is when the person is trying to retrieve their personal health information from a provider, in which case that person would be going and mucking around in a clinical record system. And when they get in there of course, if they're a hacker or something like that, they have all the information available, and we see a need for strong authentication that occurs before that person would be allowed into that system.
There's another level, and that's when the person is accessing their own personal information. And then they're usually sitting at the information device, whether it's on the internet or on their computer or on a smart card, and the code or the authentication that they would need to access that information we view as perhaps lesser as was observed from the Minnesota, so we wanted this duality addressed. And it turns out the banking industry actually has addressed it. When you're trying to withdraw several million dollars from your numbered Swiss bank account they require a different level of authentication than when you want to pay your telephone bill. So they've actually thought about it, addressed it.
We thought it would be useful to bring the Workgroup up to date on the status of health care PKI in this country, because that's one issue that always comes up with regard to authentication, and Glen Marshall from Seimens heads up the ANCI(?) HIS Committee that was looking into PCI and is a very good speaker on the subject.
The next two speakers we were looking at to address this dual level that we were talking about. And one speaker that comes to mind is from the VA, I mentioned that galaxy of speakers for the earlier panel and we would select one or ask for one from the VA because they've thought about this issue. The other speaker in researching this project I ran across a group called the Commission for Public Leadership, that's actually located in a law firm in Atlanta. But they're doing some work with OCR right now on HIPAA privacy, they're developing a template and they do a lot of work with the FTC on consumer privacy issues and authentication issues, and I learned that they were having a workshop in Atlanta last week and they graciously allowed me to attend and the Executive Director of that group, Marty Abrams, is well aware of this Committee and is very capable of addressing this duality issue. And I would suggest that we invite him as one of the presenters and either he would do it or probably his associate, Peggy Eisenhower. And those four people would make up the panel.
MR. BLAIR: We have about five minutes before we hit 6:00 so Mary Jo, you think you can lead us to conclusion within the next five minutes?
DR. DEERING: I think I can. If there are no further comments on the January hearings, what we will do is complete our homework, get back to you in advance with our proposed speaker list, but proceed expeditiously to do some invitations here.
I would like to take a few minutes to perhaps hand out this discussion of registries that Michelle and Steve, is that ready for prime time? By way of background again, it is intended at some point perhaps February, perhaps March, we need to talk with staff here, to have a series of hearings on registries, public health surveillance, NEDS, bio-terrorism and syndromic surveillance. I'm handing these around now and we can certainly email them to people who are not here. I don't think there's time to go into them in any depth but if any of you have any thoughts or suggestions for other topics that we should be putting on what would be our population health hearing, we'd certainly be happy to hear them.
I think the thought was that this hearing would take place down in Atlanta, it could be a day and a half if we can get folks to give us that amount of time again. And right now I think there are five panels on there so those could be crammed into one day very uncomfortably, but we could certainly expand them to cover two days. So your feedback on at least the broad framework for that population health hearings would be very helpful. I think that was the only business that we had on the table Jeff.
MR. BLAIR: Fantastic. Any other comments before we adjourn?
DR. HARDING: Jeff, this is Richard. I would only second Marjorie's comments about having time to discuss things at the time of the hearings. And also something that was helpful was that we found out when we were in Salt Lake City from Kepa what time the last planes left in the afternoon that got you back to the East Coast the same day, that turned out to be like 3:00 or something, that we could handle things up until 3:00 and then you had to stay over basically. So with that kind of information and I'm sure you know living there, that's the kind of things that might be helpful just in the logistics of the thing.
MR. BLAIR: Thank you Richard.
DR. DEERING: These hearings will be in Washington, so you gain time flying home. So we can work up until 8:00 p.m. can't we and you can still get home before midnight?
MR. BLAIR: It's the other way around I'm afraid.
DR. STEINDEL: Mary Jo, there's one in Atlanta and I'd like to point out you can get anywhere in the world anytime of the day from Atlanta.
DR. DEERING: That's right, I've got my clock wrong Jeff, you're quite right.
MR. BLAIR: Unfortunately the airlines have trimmed some of their evening flights out of Washington, like for example the last flight I could take tomorrow to get home leaves at 3:50. If I don't catch that flight then I stay overnight.
[Whereupon, at 6:00 p.m., the meeting was adjourned.]