[This Transcript is Unedited]

Department of Health and Human Services

National Committee on Vital and Health Statistics

Workgroup on NHII

March 3, 2005

Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201

Proceedings by:
CASET Associates, Ltd.
10201 Lee Highway, Suite 180
Fairfax, Virginia 22030
(703) 352-0091

P R O C E E D I N G S (5:10 p.m.)

DR. COHN: I want to call this meeting to order. This is a meeting of the Workgroup on the National Health Information Infrastructure of the NCVHS.

I am Simon Cohn. I am the Associate Executive Director for Health Information Policy for Kaiser Permanente and Chairman of the workgroup.

I just want to welcome the workgroup members, HHS staff and others here in person.

Do want to remind everybody that we are on the internet, and, therefore, speak clearly and into the microphone.

Let’s quickly have introductions around the table and around the room, and, obviously, if there is anything here that you need to recuse yourself about, please let us know during your introductions.

Mary Jo.

DR. DEERING: Mary Jo Deering, National Institutes of Health. Lead staff to the workgroup.

DR. LUMPKIN: John Lumpkin, Robert wood Johnson Foundation.

MS. FISCHETTI: Linda Fischetti, staff to the workgroup.

DR. TANG: Paul Tang, Palo Alto Medical Foundation and Sutter Health.

MS. TRUDEL: Karen Trudel, CMS. Staff to the workgroup.

MR. HOUSTON: John Houston, the University of Pittsburgh Medical Center, a member of the workgroup.

I’m sorry. It’s just John Houston. (Laughter).

MS. WILLIAMSON: Michelle Williamson, National Center for Health Statistics, CDC.

DR. SCANLON: Bill Scanlon from Health Policy R&D and a member of the national committee.

DR. HUFF: Stan Huff with Intermountain Healthcare in Salt Lake, and the University of Utah, a member of the workgroup.

DR. STEINDEL: Steve Steindel, Centers for Disease Control and Prevention, staff to the workgroup and liaison to the full committee.

MR. BLAIR: Jeff Blair of Medical Records Institute. Member of the workgroup.

MS. BICKFORD: Carol Bickford, American Nurses Association.

MS. BOWMAN: Sue Bowman, American Health Information Management Association.

MR. DE CARLO: Michael DeCarlo with the Blue Cross Blue Shield Association.

MR. KYLE: Frank Kyle(?), American Dental Association.

DR. COHN: Okay. Well, welcome. I think, as we have commented, this will be an abbreviated meeting. In terms of length, it will be abbreviated.

The purpose is to discuss the upcoming hearing scheduled for April 26th and 27th, and, as time permits, to reflect on the last set of hearings.

Obviously, we want to thank Mary Jo Deering for putting the agenda together, as well as the draft agenda for the upcoming hearings, and, obviously, we’ll ask her to help lead us through this.

As always, I want to emphasize that this is an open session. Those in attendance are welcome to make brief remarks, if you have information pertinent to the subject being discussed, and, obviously, if anyone has any comments on the internet, we do welcome emails and letters.

So, Mary Jo, do you want to talk a little bit about the upcoming hearing?

DR. DEERING: Let me give you a little bit of context for this. This will be the third in a recent series of hearings that is looking at personal health records, and I believe the fourth or fifth, very possibly even sixth, since the workgroup has been created to look at personal – that is, looking specifically at personal health records.

The most recent one, in January, focused particularly on getting consumer input with some provider perspectives, and the decision, at that point, was to focus a little bit more in the next set of hearings on getting more of the provider perspective and maybe to get the business perspective, which we were also unable – which we didn’t get in the January hearing.

So those were the two most important areas of inquiry that the workgroup seemed interested in, as I say, more on the provider side and the business side of things.

In addition, there had been discussion about some tangible work products of the workgroup, and those two specifically were to perhaps begin to look at the issue of a research agenda for personal health records, and, then, perhaps even more salient, as is noted in the top of this draft agenda, when we talk about personal health records, the workgroup has already recognized that the word record is perhaps misleading and we have acknowledged that we are looking at a spectrum of personal health management – but we continue to use that term.

So, with that as background, I’ll perhaps lead into what is just a draft agenda. We have not confirmed any of these presenters yet, so we look forward to some guidance from the workgroup.

We had thought that it would be interesting to begin to try and get at the business case from a higher-level view, and, actually, one of my assignments would be to talk to Gene afterward, if the workgroup does want to pursue this, and try and get at – you know, what are the economic forces here, what are the business issues that might help support the use of personal health records, however we call them and wherever they fall along the spectrum, and we could have just a single speaker or we could have more than one speaker, but we would try – this would be a context setting presentation, and so –

By the way, would you like me to go through the entire draft agenda first or stop at each item? What would –

DR. COHN: – go through it all at once, and then we can talk about it step by step.

DR. TANG: Or talk about your philosophy for putting this together, which you started on, and then maybe the background, the approach at that level versus detail?

DR. COHN: Yes, exactly.

Well, I mean, why don’t you go through it, first, because it won’t hang together unless we go through –

DR. DEERING: Okay. And then we can see whether even the philosophy was right – (laughter).

So, again, if the philosophy was to try and get at the cases that I have identified, then we would start with some broader economic context setting. Then, we would move on to talk to health plans – and I have to apologize. The draft questions which are underneath some of these panels, I was cutting and copying at about nine o’clock at night and sometimes did not wordsmith them to change some of the nouns in those questions, but I think you’ll get the gist of the nature of the question that we had in mind for these panels.

So for health plans, again, perhaps what are the factors that might influence them to adopt these tools for their beneficiary? What are they using? The workgroup had expressed continuing interest through prior hearings in getting very specific as to the functionality of these tools. What was preferred? What was used? What was actually being used? And, again, factors that might influence plans not to adopt them, and what are the prospects.

Proposed panelists might be the Association of Health Insurance Plans, Blue Cross Blue Shield, some other plan. We thought it would be good to get the consumer-driven health plans and health savings accounts in, because of the increasing attention on that particular new health-plan approach.

After lunch, we would turn to providers, and, again, the same generic type of question: What are the factors for and against their adoption and use of these tools, and what might be done to address any of the barriers that are there?

Our suggested panelists would include AAFP. We had heard from Kaiser last time, and we had also heard from Medstar Health. So we wanted to – we were asked by the workgroup to specifically look at perhaps a small group practice representative, in addition to AFP, which would, of course, speak at it from the broader family doc perspective.

We were asked to look at also other types of providers. So the nurses, home health providers was another category that we were suggesting, and I have a note there in all caps, because, as staff talked about it, they were thinking back at there was genuine interest from the workgroup in hearing from actual patients and consumers, and I thought that it might be interesting to try and get dyads going of a patient and a provider dyad from the same domain. I am not sure that we can quite get there, but it was a concept that I’ll just sort of leave floating there for the time being.

Then, also, another whole category of providers that we hadn’t heard from are people who are really what might be called more broadly the community providers, in the sense that they are serving some of the special rural, under-served populations. People had – at least some staff were knowledgeable about and interested in the PHR – which has been rolled out in California. It has been pilot tested in California for migrant workers – the National Association of Community Health Centers.

HIRSA(?) has some rural telehealth grantees in remote areas. It might be interesting to include them as a new type of – as a different type of provider.

Then moving on to the next day to perhaps get to the employer perspective, we would go, perhaps, to either the Pacific Business Group on Health or the Washington Business Group on Health – both of whom are notoriously hard to reach and get to – GM or another large self-insurer, and then, perhaps, another small-business owner. Reminding the group that we did hear from one business, the Omaha Meat Packing Group, last time, and I think some of us felt that that wasn’t necessarily a representative presentation.

Then, we thought we might want to talk about other key developments related to these tools, what is going on in the environment that might be influencing these issues and these factors, and what research is available.

The workgroup had specifically asked that Dr. Wedu Arguwall(?), who presented last time and she mentioned that she had some additional research that would be available by the end of March or early April – in fact, one of the reasons we decided to schedule it after the middle of April was that that was when she promised that she would have her research available, and so the workgroup had instructed staff that they would like us to ask her to come back.

And update on CMS activities, I think we know that they are moving fairly energetically to explore a variety of options over and above what they initially talked about. HLS has put together a PHR working group now. They have only been underway in this calendar year. So it may be premature to go to them. It may not be, but we wanted to include that, and anything else that the workgroup might think of that would have to do with some of these contextual forces.

And then I put after lunch a discussion of the work plan and the work products, because I know that you want the workgroup to get there eventually, and I added to that section of the agenda these two more deliverable type of discussion issues, the research agenda that Bob Kambic and Eduardo Ortiz had volunteered to sort of follow up and begin to outline for us, and Linda Fischetti had taken the lead on the taxonomy and has even made some international as well as national inquiries to help begin to gather what we might need, and so whether or not she is ready to say anything about that, I don’t know, but that concludes the draft agenda.

DR. COHN: John. John Paul.

MR. HOUSTON: Yes. Good. Good. I like that. First you say John, then gotcha.

DR. COHN: (Laughter).

MR. HOUSTON: Regarding panel number four – actually panel three, panel four – one of the things I had said before which I thought is important in an area where I think PHRs are really important relate to chronic conditions, and I am just wondering whether we try to find even – you know, what are the unique providers or just large providers or somebody can represent, you know, treatment of people with specific chronic conditions and how they are using PHRs to engage those physicians – or those patients, I should say – or try to improve quality care to those particular patients.

DR. SCANLON: I would say that is a good idea, and CMS has just awarded the chronic-care initiative pilot. Those contractors might actually be an essential source.


DR. COHN: Bill, you need to get to a microphone. This room is very poor for acoustics.

DR. SCANLON: Okay. I agree with that –

DR. COHN: Yes.

DR. SCANLON: – and I think that CMS has just awarded the chronic-care initiative pilot contracts and that that set of contractors is – really, in preparing their application, that they develop a strategy in terms of how they are going to manage these illnesses, and they would be a good group to draw from.

DR. COHN: A very good point.

Paul and then John.

DR. TANG: I had sort of – although I wasn’t at the hearing, I tried to go through the slides that were on the web, at least, and got a fairly good sense of what was presented, and it looks like a lot of the issues came out about what needed to be addressed. So I am wondering if we now know more of the core issues, and maybe we could almost, in a little bit of an RFI-like way, have people sort of flesh out their thoughts about things that would be required to address the issues. So, for example, to maybe taking your same set of stakeholders, but organizing them around issues rather than as a homogeneous stakeholder.

So let’s say you look at the privacy issues, if you had a panel that included consumer, provider, payer, those groups sort of talk about that issue where they see is it from their perspective the problem and what can they offer from their perspective as part of the solution, we might have a different slant, rather than hearing things that might have been presented in the earlier hearings, or, you know, like presented in all these conferences. I mean, that’s just a – you know, that, existence model, the legal, the cost, the interoperability, all those things are cross-cutting, and we might actually have a different kind of interaction if we took that approach –

DR. COHN: Yes, Paul, good idea, and, certainly, I think we sort of start out – I mean, the first one is obviously on a business issue and then, after that, it gets to be grouping. So I think you are making a good point.


DR. LUMPKIN: I think my only point was that, to the extent that we may want to look at a different approach at consumers, there are some consumer purchasing kind of coalitions. Debra Ness(?) is one name that would come to mind. They haven’t been associated with electronic or personal health records, but have been mostly associated with quality and purchasing based upon quality, and we may get some interesting perspectives from them, and I can put you in touch.

DR. COHN: Great.

I was going to comment also – I actually sort of liked what Paul was saying in terms of doing cross cutting.

I was actually also thinking that maybe front-loading some information, as opposed to having it sort of come through all two days, might be a little useful, and I’m – obviously – I’m looking at Linda to see what she has done with the taxonomy, but given that the reason that we were talking about a taxonomy at the last meeting was we were talking across each other on all of these terms and we sort of didn’t know what we meant, that I am wondering – I mean, and, obviously, it has caused us to talk about personal health management tools, now, as opposed to personal health records. I am still wondering whether or not you ought to have – I mean, Linda, I know where you are going to be then, but I’m wondering if maybe you should be early on the agenda rather than at the end, after we have really confused ourselves.


MR. HOUSTON: – discuss it today.

DR. COHN: Well, I don’t think we have time, John Paul.

MS. FISCHETTI: What is coming out is basically is just very immature. When we sat here last time and we came up with four, we were in the ballpark. Internationally, they look at three to four, and within the HL7 PHR workgroup, they have come up with seven flavors, and what is also impressive is that this is so early in its life cycle that we probably don’t want to come up with definitions and then force industry into those definitions. We just want to come up with a standard language that we can use so we know what we talk about, knowing that that is going to migrate over time.

So, yes, certainly, I could do a presentation earlier.

DR. COHN: Okay. Good. I just think that might help keep us talking the same language through the session.

Now, I guess – the economic forces, I think, are very important, and I think we have begun to talk about – I mean, there’s economic, CMS. I think Bill Scanlon brought up this very interesting issue about the CMS demonstrations and the chronic-care – put there’s also just general concern that CMS has about – and Bill Moses being on Medpack(?) about sustainability of the Medicare program, and so they must be thinking of – I mean, we know they are thinking about these sorts of things. So maybe there are a couple of people or whatever we’ll be able to hear from CMS about this, and some of their thoughts.


MR. HUNGATE: Just a suggestion on the panelists for the business group. There is also a National Business Coalition on Health. It is here in D.C. Andy Weber would be one that you consider or should consider with those other two as well, as an alternative to a specific business group or Washington business group. You know, they represent coalitions nationally. So it is a very broad-based, much broader based than either of the other two, really.

DR. TANG: I can offer another employer, and that would be Cisco(?), because they have a very – one, you know, the CEO, John Chambers, talks about their skyrocketing medical costs, and, two, they think this – wholly(?) PHR, and PHR is one solution to that. So it is always helpful – Although you may get a coalition point of view, it is always helpful to get real tangible, this is my company’s problem, and this is why I believe in it.

MR. HOUSTON: Do we want to engage – What about somebody from the military –

SPEAKER: Would you speak into the microphone?

MR. HOUSTON: The military. There are initiatives with regards – I think they do have a number of initiatives going on right now in this regard, and they would, I think, represent a very large, complex, diverse, you know, mobile environment. I know we are doing –

DR. DEERING: Ask a clarifying question there. We have heard from My Healthy Vet, which is –

MR. HOUSTON: Well, that’s the VA. I am thinking more of –


MR. HOUSTON: DOD or one of the branches or was it Tri-Care or –

DR. DEERING: We heard from Tri-Care, too.

MR. HOUSTON: Did we?

DR. DEERING: Yes, we actually heard from Tri-Care last time.

MS. FISCHETTI: Well, they started with more the business process, which was focused on scheduling and that aspect.

MR. HOUSTON: Because like I know right now that we have an initiative going on where we are developing a diabetes portal on an Air Force grant. So there are those types of activities going on I know.

DR. DEERING: Another issue that came up – I am getting a little bit mixed up between our hearings and the privacy hearings that were held last week. I do strongly encourage our workgroup to look at last week’s privacy subcommittee hearings, because day two, in particular, was the consumer perspective, and one of the discussions that came out of that was this core issue of the so-called patient control of information of which there is a lot of rhetoric and a lot of interest, but, you know, how do you get there from here?

And, for example, at the privacy hearing what came out was – universal from the consumer representatives was, You give our consumers more control, they’ll actually give you more data. The more control they have, paradoxically, the more data they give you.

So, therefore, the challenge is what kind of a structure do you need to embody that within the constructs of our current healthcare delivery system, but there are entities and approaches that are beginning to look at consent management or authorization management for patient consumers, and so that – you know, the whole notion of patient control and consent might be one that is appropriate for – since it cuts across both privacy and security, it could be one that we would want to consider as one of your – areas.

DR. COHN: John Paul –

MR. HOUSTON: Should that – I mean, in the privacy committee, that doesn’t mean that we can’t have them as part of NCVHS, delve into that specific issue itself, because it may be better suited to address it sort of as an adjunct to our – what is going on in this workgroup. I mean, does it need to come back – does that subject actually have to come back to this workgroup or can it just simply be handled through what is already going on within the privacy subcommittee?

DR. COHN: I think that was sort of what Mary Jo was saying, that we should be tracking what is going on with privacy, which I think is what you are saying is that –


DR. COHN: – shouldn’t go over it here.

MR. HOUSTON: Maybe I misunderstood that she was implying that we should actually delve into it.

DR. DEERING: I actually was implying that –

DR. COHN: Okay. I’m sorry.

DR. DEERING: – because I think they have set out their agenda and they have heard from consumers. The Chicago hearing is totally set. They will have one more hearing on HIN related issues where they wanted to look at – specifically from vendors and implementers of electronic health records, and so I think their next two sets of hearings are already taken up, but they could certainly – we could suggest, you know, if they were interested, that they could do it in the fall or –

MR. HOUSTON: I would think it would be just have that – ask that committee to continue on in that regard, if there’s other specific issues that need to be addressed or we wanted to delve deeper into something. I mean, I know I am on that committee, and I think it would be a good way to –

DR. COHN: Well, you know, I think the other issue, of course, is that privacy permeates everything, and so it is certainly easy enough in all of these sessions. I don’t know if there’s a specific – I mean, I guess one could imagine that maybe there is one session that we could put on that just talks about privacy issues, but – may make sense that that is one of the questions we ask everybody on any of these panels. You know, they may be talking about economic forces or they may be talking about some other issue, slipping in a question, Well, geez, are there privacy issues that may get in the way of you trying to achieve your mission or whatever or how are you handling things in relationship to that, which might be illuminating. So you might be able to handle them both.

Other thoughts on this agenda at this point? I mean, we are – It seems to me like we, obviously, have some work to do to try to put this together, though I think that Paul’s idea of thematic is a good one, at least as far as we can take it, though, likely, it will break down at a certain point.

Certainly, from my view, I wanted to hear – I feel like I have heard a lot from providers about all of this stuff, and I am still sort of trying to get my hands on the business case, like what is causing – knowing that, at the end of the day, it is the dollars that people invest that cause X, Y and Z to happen.

I keep having the suspicion that, really, everybody is investing in creating scheduling – software – which may be fine – or health plan – you know – send us an email if you have any problem with me as a health plan and I’ll send you back an email-type response or whatever, but I don’t know that for sure. I just don’t know where the value added here is. I think that was my memory – Tri-Care was talking about that they had gone a long way into a lot of the administrative simplification, and had only begun to sort of move beyond that.


DR. TANG: So, Mary, you said your outcome was one of taxonomy, and, two, a research agenda. Did you think that we could come up with some other recommendations, other than research?

DR. DEERING: Well, these were not necessarily for recommendations. I think –

Is that someone joining us or leaving us?

DR. ORTIZ: Hello.

DR. DEERING: Hello, who is there?

DR. ORTIZ: It’s Eduardo.

DR. COHN: Okay.

DR. DEERING: Welcome, Eduardo.

DR. ORTIZ: Oh, hi.

DR. DEERING: It is actually very timely. Paul Tang was asking whether we had seen the research on the taxonomy as the only two areas for recommendations, and I was – to say that they weren’t necessarily recommendations, that there had been some discussion within the workgroup about maybe we should actually do something, as opposed to just make a recommendation or just hear from people.

There was other thoughts that we should – over and above these tangible work products that we might produce –

DR. ORTIZ: I don’t know if it is just my phone, but you are fading in and out a lot, so I could only hear like about a third of what you said.

DR. DEERING: Well, only a third of what I say means anything, so, you know, you are – let’s just hope you are catching the right third. (Laugher).

DR. ORTIZ: Did you guys – I called in at five, but I was listening in to a totally different group, so I just called back now, because I figured it must have run over. It was from 5:00 to like 5:15, a different working group was discussing something.

DR. DEERING: We have an identity problem here, so –

DR. ORTIZ: Oh, okay.

DR. DEERING: But the thinking also that had been maybe put on the table was around these broader issues of personal health records or whatever we call them. Maybe we should set a stake on a far horizon when we will be ready to write a letter recommendation or a letter report to the Secretary more around these broader issues. So these just happen to be the only two tangible work products that seem to resonate at all with the work group.

So I guess we would like a confirmation of whether you do still want staff time allocated in these areas or not.

DR. ORTIZ: I think so, but since I only heard about one third of what you said, I am not sure what I am saying yes to, but I think the answer is yes.

DR. DEERING: Eduardo had volunteered to lead – Maybe, Eduardo, for the record, you should clarify – let’s understand and then give confirmation of what the charge is. So would you like to state your understanding of what you are left with on January 6th?

DR. ORTIZ: For the next set of hearings or for what –

DR. DEERING: For your work on the research agenda.

DR. ORTIZ: – because you have to fill me in, because I missed – everything came in choppy. I am not sure what you said.

DR. DEERING: For your work on the research agenda, specifically.

DR. ORTIZ: Oh, okay. My understanding is that Bob and I – Bob Kambic and I – were going to take a kind of a lead role – not the only role, but just a lead role, because somebody needed to kind of step in – and try and start delineating what the research issues, research questions in this whole field of personal health records.

So I was thinking, initially, what we would be starting off is trying to figure out what are those areas, and so one of the things I did is I kind of reached out and sent emails to people I know that are working in personal health records – you know, Blackford Middleton(?), Jonathon Wall, Danny Fans, John Shoe(?) from Kaiser, other people like that – and say, you know, based on your experience, based on the research you have done, based on your clinical expertise, what are some of the issues, the gaps, the questions that we need to be answering from a research perspective. That is kind of where I am at right now.

And, then, once we kind of bring these up to whether it is here in the smaller group or later on, kind of figuring out where do we go from there. I am not sure what that means in terms of the longer-term broader issue for our working group, though.

DR. COHN: Well, I think, depending on what you find, it may be parts of recommendations that go to the Secretary. So I would certainly encourage you to start looking at that and see if you can come back to us with some information.

DR. ORTIZ: Yes, and that is why I was hoping to get that, and then put it out to you, to the group, to the NHII Working Group, which then also would go out to the NCVHS full committee, and, then, as a group, people can chime in and decide, What do we do with this? Do we generate a letter? Does that mean we need to get more people into testify? Does this mean – you know, what do we do with these pieces? And that is kind of my understanding at this point, and that is where I was heading, if that is the right direction for us to head.

DR. COHN: Yes, I think as you – I mean, I think getting a report back from you about what you found will be very helpful.

DR. ORTIZ: Okay.

DR. COHN: Okay. Now, is there anything else on this agenda? I mean, we are going to need to adjourn in just a couple of minutes, so I want anybody who has anything important to say about this – and, then, we’ll talk very, very briefly about next step.

Mike and then John Paul.

DR. FITZMAURICE: A couple of thoughts about getting perspectives of the customers, the vendors of personal health records; that is, somebody after giving us a case study of, I stopped using my Excel Spreadsheet, and I am starting to use this personal health record, and here is how it benefits me and my family. Here is what I do now that I wasn’t doing before. Here is the value to me.

You might also look to see are there continuity of character users; that is, physicians use them to transmit information from one physician to another. What about the patient when they get this and carry it? Are there such patients? Is there anything like that in use? I think some of the states have them. Who is the user of that and what is the value they see to them and their family?

And, finally, there are these boutique health providers that charge a lot of money. Don’t give me insurance. Give me money, and I am going to take care of you. Is there something they give their patients to keep them safe, healthy, well and continuing to pay? Is there a personal health record they want them to keep? Is there some communication and a form for that communication that they find advantageous among their particular kind of client?

DR. COHN: Okay. Thank you.

John Paul.

MR. HOUSTON: Just a quick comment.

We have this letter from Dr. Brailer about some of the things he would like us to work on vis-a-vis, I guess, NHII, by implication. I just want to make sure we don’t lose sight of as we are setting up agendas that there are two things I know that he is very interested in us doing, maybe as a committee, but, obviously, there are some – it does relate to NHII also.

DR. COHN: Yes, John Paul, actually, I think just for the subcommittee – for the workgroup’s purview, one of them is related to populations, and I think what we are trying to do is to have the populations subcommittee investigate the one that relates to the 21st Century and all that.

The Federal Health Architecture is going to be a – my sense is that it is going to be a conversation that is probably going to be started at the full committee meeting in June, potentially before, but, certainly, there. We’ll include, certainly, NHII Workgroup for some aspects, but probably a lot of standards and security for others.

Obviously, the architecture goes from a very high level to very specific, and it is very clear that things like CHI work and the next phases of that there are a lot of standards questions –


DR. COHN: – or whatever are clearly not for this workgroup –

MR. HOUSTON: Absolutely.

DR. COHN: – but the higher level issues are probably very appropriate for us to be talking about.

MR. HOUSTON: You know, this is dated from January, so I hate to wait too long before we start to work on something. I know he has a very – he wants to move on his agenda, obviously, and I think for us to be meaningful, I want to make sure we – we should spend a few minutes tomorrow just talking this through some more, so that we don’t have to wait until – I think you said June, right? Is that the date for the next full committee?

DR. COHN: Yes, the date of the next full committee.

MR. HOUSTON: I would hate to wait ‘til then to start to talk about it.

DR. COHN: Well, I think we need to figure out what are the useful action items, and I think that is something where we could talk about it, but probably there needs to be some more quiet conversations first –


DR. COHN: – on how to tee up the issues appropriately. Though, certainly, if there is time, we can talk about it, because it is certainly something that we will be needing to work on.


DR. COHN: So I agree with you. I don’t think anybody is forgetting that one. I mean David brought it up. I think it is clearly an area that I think we all have a lot of interest in. I think the bigger issue is probably more when they’ll be ready to say something to us that would have some substance to it.

Now, what we do is we have a meeting on April 26th and 27th, and, actually, John Paul, just sort of maybe following on that, one of the questions should be is whether or not we might have time to spend a little bit of time if there is something introductory or something specific that we can begin to get our hands around on the FHA, even for the April meeting, because I think that this is a flexible enough schedule –


DR. COHN: – that we probably could find some time to talk about that. I mean, we are going to have time for a day on it, but I don’t know that we are ready for a day on it.

MR. HOUSTON: Right. I would agree. I just wanted to make sure we didn’t lose sight of this and –

DR. COHN: Sure, and I agree with you, and I think it is a very good idea.

Other comments before we close?

DR. DEERING: I want to make sure that I understand some direction orders, but – and I’ll start with the last first.

We haven’t actually seen yet – Has Dr. Brailer formally presented to us the state of the Federal Health Architecture work so far? Have we seen anything?

DR. COHN: No, he has written us a letter.

DR. DEERING: Right. I saw the letter –

DR. COHN: Yes.

DR. DEERING: – just saying, I want you to do it, but he hasn’t told us what it is yet.

So maybe the thing for April 26th is to try and get – I think Lee Jones is leading that effort, my understanding, and they will have, by that point, already digested some of their RFI, and so, perhaps, we could invite – what? – Mary Forbes, okay. We could invite Mary Forbes to come and tell us what is the state of that. We want to be helpful, and we could at least get the foundation.



MS. FISCHETTI: You just said two things. FHA would be Mary Forbes, but then you said RFI, and the FHA work and the RFI work are not combined. So RFI would be Lee Jones is the point of contact.

DR. DEERING: Okay. But Mary Forbes is what I think I hear that we would want.

Yes, I was just thinking that I have heard them also say that they are looking to the RFI to help inform the architecture issue, in some way, but I am – I myself am not entirely clear about the April layout here. I have heard support for Paul’s approach to try and take some crosscutting looks. You mentioned privacy costs and interoperability. Again, the privacy subcommittee has just met and they had a day on consumers’ approaches or thoughts on privacy. So I would just like to get a confirmation that you would like us to have another separate session on privacy or to make sure that we build it into the questions we ask of any of the providers.

MS. WILLIAMSON: It might be helpful also if you see the agenda. They will be discussing that in the morning, so they have a full agenda focusing on privacy in the health information technology.

DR. TANG: Or is the – I don’t think the information from the last hearing is on the net yet, so I couldn’t review that, but –

MS. WILLIAMSON: But in the morning, the privacy subcommittee will be meeting to discuss their agenda for the March 30-31st meeting.

DR. COHN: Yes, Mary Jo, I think what I’m – what I think we are hearing is that you should ask questions about it, but it is probably not a session.


DR. TANG: And you might ask sort of what – their tradeoffs. If everybody says, I want my privacy and I want to control every data element, I am not sure we’ll be further along, but if we could ask them to reflect on the tradeoffs – it could give us some clues for how to solve the problem.

DR. DEERING: Any other specific names that you want to suggest, like for the economist or for the businesses? It is very helpful, because we can sometimes get to the large organizations that are well known. They’ve got a mechanism to get us to somebody who will testify, but to the extent that we are looking for more interesting, different people, it is real hard for staff to tease that out, so all recommendations are urgently solicited.

MS. FISCHETTI: Just one quick question. At one point in time we floated the idea of lay vocabulary as well, and should we hit on that again and would that be appropriate in the April agenda?

DR. COHN: Well, if there’s time. Let’s see – that certainly would be a valid issue.

DR. VIGILANTE: (Off mike).

DR. COHN: Yes, I think that Mary Jo had mentioned Gene already. You had mentioned Gene already to help you with the economist question.

DR. DEERING: Gene, right. Right.

DR. COHN: Yes. Okay.

Okay. Now, I know that not all the questions are answered. I think what will be seen are sort of successive draft agendas from Mary Jo. I’ll obviously take a look at them. We’ll be sending them around to everybody for comment. I will do my best to avoid us having to have a conference call between now and the April hearing, but if one appears to be necessary, we’ll try to schedule one.

Now, is there anything else for the moment?

Obviously, at that point, we will – we’ll probably begin to have some quiet conversations about sort of next steps beyond April – do a lot of emailing to communicate around all of that.

Okay. Now, it is now 5:50. I think we need to adjourn.

SPEAKER: So moved.

DR. COHN: So moved. See everybody in the morning.

(Whereupon the subcommittee adjourned at 5:50 p.m.)