[This Transcript is Unedited]




September 1, 2004

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

Proceedings By:
CASET Associates, Ltd.
10201 Lee Highway, Suite 160
Fairfax, Virginia 22030
(703) 352-0091

List of Participants:

  • John Lumpkin, Chair
  • Simon Cohn
  • Jeffrey Blair
  • Richard Harding
  • John Houston
  • Robert W. Hungate
  • C. Eugene Steuerle
  • Kevin C. Vigilante
  • Mary Jo Deering
  • Eduardo Ortiz
  • Anna Poker
  • Steven J. Steindel
  • Michelle Williamson
  • Michael Fitzmaurice
  • Stan Huff
  • Ms. Wark
  • Ms. McAndrew
  • Robert Kambic
  • Marjorie Greenberg
  • Ms. Carr

Table of Contents:

  • Call to Order and Introductions
  • Summary of July 23 NHII Meeting
  • Discussion of Hearings to be Scheduled

P R O C E E D I N G S  [4:39 p.m.]

DR. LUMPKIN:  Let’s get started.  The letter was already approved.  We have three things to do, two that we definitely need to go to.  The three things that we have to do is, we have a hearing that we are trying to schedule for November 12, on the personal health record.  We should review the action items based upon our meeting at the end of the NHII conference, and then a third, to begin to walk through the road map, which is one of those action items.

Why don’t we start off with introductions.  I am John Lumpkin, Chair of the work group and Senior Vice President of the Robert Wood Johnson Foundation.

(Whereupon, introductions were performed.)

DR. LUMPKIN:  I’m just going to run through the letter, just to remind ourselves what we thought were tasks that needed to be done.

The first item that we identified in the letter to the Secretary related to the NHII was how best to connect somebody up to their own personal health information.  We were successful in turfing that to Standards and Security.  Issues related to personal control of health information, related to privacy, which we thought we would send to the privacy subcommittee.  General policy issues related to personal health records, we have an agenda item on the hearing for November 12.  Developing a research agenda for the NHII, we had some discussion around that at the executive subcommittee, and I will discuss that again tomorrow.  Issues related to moving the data between health care, population health and personal health dimensions, I think that one is ours.  Development of a comprehensive statement on the rules of the road, which is also ours, and in your folder is Steve’s first cut at that, that we shared.  Then finally, the issue of revisiting in six months the issues of metrics and conformance testing.

So I think the ones that we have on our plate most immediately are the rules of the road, personal health record and the movement of data between the different dimensions.  Is that what everybody remembers?

I think at this meeting, we can talk about the personal health record, since that is the most immediate, talk a little bit about the rules of the road, and if we have any time left over, we can talk a little bit about how we are going to address the issue of movement of the data between dimensions.

DR. DEERFIELD:  You do have a two-sided document in there that says draft, August 30, on the federal government’s role regarding personal health records.  I want to perhaps note that that is understood to be our charge, because perhaps there is a different or a broader charge.  We did feel that we heard you were particularly interested in the federal government’s role, whether it be in promoting, developing or possibly hosting personal health records, so this is not just the issues for the field as a whole, but specifically how does this touch the federal government.

So with that perspective in mind, we wanted to — staff suggests starting out with looking very clearly on what do we mean by PHRs, because they are being used in different ways.  Some people seem to use it very narrowly as the record.  Others seem to use it more like a PHR system or as a suite of functions, and it would be good to get that out on the table, especially if HHS leadership has one very precise definition which might need to be related to other available definitions.

Within this first panel, we thought we would try to lay out where things are at right now, where do people think the personal health record is, how is it currently supported, by standards, vocabularies, et cetera, or not, what are the drivers and barriers.  So at the end of that first panel, we would hope to have this baseline from which we are working.

We thought it could be useful to have vendors and consumers, or some thought maybe some working providers; that was another suggestion that was put on the table.  But the goal of panel two is to see how other people would view the federal government getting into this space, basically.  So we could have several vendors talking about that.  We could have vendors and providers looking at it.  We certainly would want to include the consumer patient perspective on that.

AARP is suggested there.  It turns out they have looked very, very deeply at the issue of PHRs, and just in the last day or two launched a new personal health website, and they have had deep internal policy discussions about this.  So they are clearly up to speed on what a large segment of the population’s perspective might be on what these things would mean.

The proposed panel three are other policy issues about federal sponsorship or hosting of PHRs, apart from the audiences of VA or DoD, where they are health care providers.  Are there legal issues, not only HIPAA, but OMB has certain guidelines about the federal collection of information that are a little bit different than those that are related to HIPAA.  What are the financial or business case issues for the federal government to get into, hosting or operating PHRs, what would be the issues of them seeking any federally hosted or sponsored PHRs linking out to commercial and/or other private sector PHRs.

Then the fourth proposed panel would be to understand where can we go from herein the federal government, looking at open source models that are available, but also trying to understand what are various agencies already thinking of.  We heard murmerings of some fairly strong interest in different areas and moving down different paths that use the term personal health record, so it would be good to know what is going on there, what do we have available.  Some areas may not be looking at it, namely, HRSA may not be, AHRQ may not be, OPM may not be, and there is talk about how they would relate to the activities that they sponsor.

So these are all just straw panels to put on the table to see if we have got the right scope and substance.


MR. BLAIR:  I really like this layout.  Is there included in one fashion or another questions where we could learn what are the perceived relationships between PHRs and EHRs?  The reason that I am so interested in that question is, if folks are perceiving a personal health record to be a lifetime health record, where all of the provider based EHRs can be linked to it.  That is one model of connection.  Then we could begin to work on the standards that could make that work.  But if they are looking at PHRs as subsets, which are there independently but co-existent with EHRs, then that is a different model.

So if there is some way to include within the agenda that you have set up questions that could give us some better understanding of the relationship between PHRs and EHRs, I think that would help a lot.

DR. LUMPKIN:  Simon.

DR. COHN:  I think my comments may be somewhat aligned with Jeff’s.  I think the question that Jeff asks is a very good one, and I think we need to include that.

I found as I was looking at the agenda, I like it.  My first question is, what are PHRs, how are PHRs different from the personal health dimension, what are we really talking about when we talk about all of this.  Then from there, how does all this play into a different business model and different ways that people envision the world in the future.

I think the issues that Jeff was describing are just like a beginning view into the way the marketplace is trying to figure out, are PHRs the center of things or are they just an interface with an otherwise integrated set of systems.  These are major differences, these are not small things that get handled incidentally in a definitional panel.

Indeed, I see perspectives from vendors and consumers, where you are asking questions about possible partnership activities and whatever, whatever.  I think we should be asking what do they mean by PHRs or personal health dimensions, or what do they think the market wants and what do they think the patients need, and what are they developing to and all of this.

Once again, I am painfully aware that I am seeing many different models here.  I almost look at this agenda as almost assuming that we know the answer, and that the answer is the VA-DoD answer.  I am less certain about that.

DR. LUMPKIN:  Marjorie.

DR. GREENBERG:  I guess I am aware of work of federal agencies that are actually insurers or providers of care doe with the personal health record, so the VA.  Medicare is talking about maybe a portal or something.

I wasn’t aware of the fact that — are you talking more broadly about the federal government possibly being a source or somehow hosting personal health records for anybody, not just those who are insured by the federal government, or to whom the federal government delivers — a particular agency like Department of Defense or Indian Health Service or Department of Indian Affairs, but just generally?  I hadn’t realized that was on the table.

DR. DEERFIELD:  It was only one of the issues.  Certainly it is not a widespread movement, but I know that there has been some interest in some quarters in looking at a discussion with My Healthy people that is out there for the veterans, is there some interest in having another agency use that as a model.

DR. GREENBERG:  Anyone who is a veteran of health care.

DR. DEERFIELD:  And you’ve got the scars to show it, right?  Exactly.  That is why we said as promotion, development or possibly hosting.  Yes, the National Cancer Institute is actually actively looking into this question, and knows that it is full of land mines.  That was just one of the ways that the federal government might possibly be involved.

DR. LUMPKIN:  Do we have any contacts within NCI?

MR. BLAIR:  Do they talk to us?  I was kidding.  This would change the agenda if we do this.  I just don’t know, but it is just a thought, anyway.

Maybe we should consider soliciting a lot of different opinions about what the model for PHR should be, and their relationship to EHRs.  There is probably not going to be consensus on that, and we may have to listen to a lot of different views — many of them are good — sort them out, and then see if we build consensus before we begin to figure out what the appropriate role of the federal government should be.  The role that the federal government could play could be very, very different, based on what PHRs are and how they relate to EHRs.

DR. LUMPKIN:  Let me pose the question, because when I look at this, when I think about Jeff’s recommendation and I look at this, and I say, what would it be that we would recommend based upon this hearing, or additional hearings, do we see that this work group and the committee would make recommendations on what the ideal personal health record should look like?  Do we see this committee looking at trying to make recommendations on what obstacles exist in trying to integrate personal health records with electronic health records.  Those are really two different kinds of things.

Do we believe that the market in the space is mature enough that it is ready to set any sort of standards, which again is the area that we recommend?  I think that we might want to explore the range of what are filling in the space, and given the direction of development, what are the NHII issues.  In other words, if you have someone who has a personal portal and that portal expands so that now you can manage some of your own personal health information, how portable is that?

DR. GREENBERG:  How portable is the portal.

DR. LUMPKIN:  How portable is the portal.

MR. BLAIR:  How portable is the data in the portal.

DR. LUMPKIN:  Exactly.  If I switch health plans, does everything that I have done in my personal portal go away?

DR. GREENBERG:  I hope not.

DR. LUMPKIN:  Those are the kinds of issues.  We can begin by looking at that within the federal enterprise and say, within that context, how has the federal government looked at this issue, to the extent that they are doing it, and I think that would be consistent with this direction; have they even addressed that.  Then begin to expand that in subsequent hearings, and look at the private sector.  That may be one approach, I’m not really sure.  I think that may — if we think about what it is that we may want to recommend, it better defines the hearing.

MR. HUNT:  I had another thought related to this.  One of the issues in the personal health record, it seems to me, is the distinction between personal control of the whole process of improving our health, spoken of from the professional point of view as compliance.  Those kind of issues are greatest in the severest disease states, and the disease management movement is a very big movement taking place in the provider-purchaser community.

So I wonder about picking some of those and looking at the vendors that do the disease management services and say, how does the personal health record fit in your thinking of how the population you are worried about improving the health of improve.       Along those lines, I think CMS has a demonstration program around congestive heart failure, where monitoring devices are being given to individuals to improve their personal control, so that is a start in the personal health record in a tangible action.

So I am inclined to say, can we pick up on some of these technology thrusts that are taking place around improving health of populations that use technology as a place to look at the personal health record.  That is just a question related to this overall hearing process.

DR. DEERFIELD:  I was just thinking, that does open up a second way in which CMS is looking at personal health record.  A week from today, on Capitol Hill, on one of the e-health initiatives, one of those Capital Hill, Sandy Hutt, who is newly  overseeing their chronic disease management program, is going to talk about technology for chronic disease management from the CMS perspective.

So not only as their portal for Medicare beneficiaries, but to the extent that they start promoting through Medicare the use of personal health management systems that collect personal data and that should be portable from Medicare provider to Medicare provider.  That would be another aspect to it.

DR. HUNGATE:  In that context, I think the employer community may have some thoughts that are germane to this that would bridge more quickly into some of these action plans.

DR. LUMPKIN:  We usually have a rule that first time meeting people can’t talk, but we will make an exception for you.

MS. WARK:  Just to add on to what Mary Jo was saying about what CMS is beginning to do with the beneficiary portal, the whole idea is — getting back to the word control, I am looking at this and thinking that perhaps we could add something about functions, because the whole idea is to incorporate functions into whatever — if it is a portal — that enables people to be in control of their personal health information in a way that they can participate in  disease management programs by becoming educated, and manage their information in such a way that they get the care that they need, get the appointments they need, have reminders about things that they need to do.

There is a proliferation of websites out there that people are already beginning to use to manage their own health and input their own data to improve eating habits, to exercise more, weight reduction, all of those kind of things that support disease management.

While the beneficiary portal initially will start with the data that is available from claims types of information, the idea is to expand that over time to include other types of information to give people that control that they need to be a part of managing their health.

So I guess the one area that could be added is functionality, that will enable patient education, participation in disease management programs, that goes beyond the data and the content.

DR. LUMPKIN:  Given this discussion, let’s walk through the proposed hearing that we have for November 12, and see how we would want to address that.

I think the first session to my mind looks like it is a good opening session.

DR. GREENBERG:  And essential.

DR. LUMPKIN:  And essential.

DR. GREENBERG:  Because those groups have done a lot of work.  We don’t want to duplicate what they have done.

DR. LUMPKIN:  The next issue though, what I am not seeing in the first panel, I’m not sure to what extent the conceptual model that is being dealt with here is a personal health record as a functionality as opposed to a portal.  I don’t know that this first panel is going to address that issue of portals.  So we may either want to expand the first panel, or look at the second panel, looking at the other aspect, which is the portal aspect of the electronic health record, the CMS approach.  Maybe the VA, My Healthy Vet model, and take some of the things that are done on the fourth panel, but do it as a second panel, looking at other alternative approaches.

DR. GREENBERG:  Integrate them, or —

DR. LUMPKIN:  No, I think probably the second panel would be more what is on the fourth panel, but trying to have more of a focus in that second panel, which used to be the fourth panel, the portal approach to personal health records.

DR. GREENBERG:  Can you describe what that approach is?

DR. LUMPKIN:  I will after the hearing.  As I see the difference, if you think of an electronic health record, but it is something that I own, that would be my personal health record.  That would be a stand-alone Quicken kind of entity that would be populated by me, but also perhaps populated through certain messages from my provider.

The portal is now — let’s make up an imaginary managed care organization called something like Kaiser, and let’s suppose they had all sorts of data about me.  With a C, because it is pretend.  They would then make my data available, because I would have a view through this portal to my data, and I may be able to add stuff to it, but it is a different approach.  Those are I think the two ones that I have heard about.

I don’t know if anyone has a better description of them.  Is that close?

DR. VIGILANTE:  Is there a way to synthesize that, in the sense that people have talked about being able to from the portal download their information on a USP drive, and carry it around with them, when they show up at a doc’s someplace, they can carry it that way, too.  It is in a place that they own as well.  It is another thing that I have heard, about how you own and carry it with you.

DR. DEERFIELD:  I am beginning to hear almost a visual continuum.  So far we have mostly mapped out the extremes, the totally stand-alone Quicken version on one end, which is the unique fully high integrity PHR or whatever you want to call it.

Then the other is closer to a provider provided, access to your ENR.  There are probably — those are the two clearest alternative models, but as Simon and Jeff have raised, I think what we are sensing is that maybe the spectrum in between is becoming a little bit more differentiated than it was in the past.

That is one of the things that we want to learn about, is there something between these two fairly clear existing models, and are there things that are coming out that may be driven by business interests or other policy drivers or whatever.  I’m not aware that there is a whole lot, but —

DR. LUMPKIN:  Steve, you have that troubled look.

DR. STEINDEL:  Today it is probably justifiable.  It has nothing to do with the committee.

I think this gets to my basic question.  In exchange of e-mails that we had putting this together, I still don’t have a clear answer of what is a PHR.  Even after this discussion, I don’t have a clear answer of what is a PHR.  I think we could spend a whole hearing day on exploring the various aspects of the answer to that question.

Is it a life to death record that a person keeps with them on a thumb drive?  Is it spots and bits and pieces that are in this portal or that portal?  Is it being used for prevention and chronic care?  We have all these different views of a PHR, and I think we have a lot of different needs from a PHR in each one of these different views.

DR. DEERFIELD:  What could emerge from the first two panels, if we go beyond just the two approaches, could be not so much in the form of a recommendation per se, but a letter that says, of what we heard, these appear to be shared characteristics of all of these views. This is what they share, and this is where they differ.  I’m not sure we want to go there, but —

MR. BLAIR:  The first of these is getting the best of me.  We had a document from Duke University that was circulating, where they had a model of PHRs as the center of an NHII.  It was very intriguing.  In short, I would hope that they would be included on the panel and we could understand what their view is.

The other piece is, it was Bob Hungate with a disease management viewpoint.  In short, I think it is helpful for us to hear from as many different models as possible.  It would be nice after we heard from the diversity if we begin to identify what are some common themes or common trends.  Maybe after we listen to the diversity, you wind up seeing how this starts to pull together.  Or maybe we will learn that it is just too early for us to decide on one model or another.  That is important information, too.

MS. CARR:  John, I don’t mean to perseverate on the same theme, but where I keep seeing these things is that there are data elements, like the discussion this morning in e-prescribing, there may be a circuit of information that goes from the pharmacist to the physician to the patient on a particular day and in a particular state.

The question is, is that an isolated episode that is captured electronically, or does it feed into a data repository.  In this case, the data repository might be that the patient owns all the elements of it and can make it available or not, or does it go to some other vast data repository in the way various payors have all of the claims data, or CMS has all the data.

I think also, we are trying to be clear on what is our g goal.  If we really believe integrated health information makes care safer, more effective, more efficient, then there should be somewhere that these things can be integrated.  I think what we are struggling with is, where is that, in a patient’s pocket or in some federal repository.

PARTICIPANT:  I think maybe all of the above.  In other words, maybe there is portability for the patient and also a repository for quality tracking surveillance to see what is happening nationwide.  In other words, it is feasible to have both, I think.

MS. CARR:  Right.  I don’t see what we are talking about is so different.  Data integrates somewhere, and that integration is available to the appropriate people, be it the patient, the provider or the people in between.  So I don’t see these things as so separate as the personal health record and the electronic health record.  I think they are a continuum of the excellent care of the patient.

DR. STEINDEL:  I would like to capture the thought that data is integrated somewhere and for the purposes that we need.  I would like to strike the term federal repository from our thought process.

DR. LUMPKIN:  Well, that certainly would make my life easier.

MS. CARR:  Since I was one of the people that had asked the work group to consider a hearing that included a look at the federal role in this area, I don’t want to entirely leave that off the agenda.

For about three to four years, ODPHP staff have had a proposal on the table within our office to use Health Finder as a vehicle for integrating personal health records or some of the functionality of personal health records.  We have been ready to move on that for, as I said, three to four years.  We have a vehicle.  We have millions of people coming to that website, that portal, right now, and we are still in a position to experiment with that.

So before Mary Jo left ODPHP, I told her that we were seriously looking at how we were going to do that within Health Finder.  She said that there hadn’t been a lot of discussion yet about what the federal role in this space might be.  That is why we have looked at commissioning this paper, which it looks like we will do in the fall.  We will look at the federal role in this space.            But we have a vehicle, and we probably have a decent amount of funds in ’05 to do something with this.  So from my perspective, it would be really helpful if the committee could at least think about what this might mean as a stopgap measure.

So for example, if I am a patient of Kaiser and I do need to move to United Health Care, there is a lot to work out about how that is going to happen.  We could be doing some work in the meantime while all that is being worked out, about how this functionality might be integrated with what we know people are already doing on the Internet, which is searching for health information.

That is one of the core questions we are interested in, is how is the information itself that we already know people are accessing and using, how is that going to integrate with all the functions that were discussed earlier.

DR. ORTIZ:  Just listening to all this, this makes me think a little bit about the conversation we had about the unique patient identifier.  The reason it makes me think about that is, initially we were thinking unique patient identifier as a term for something you shot for, and people said, wait a minute, it is not unique patient identifier, we need to think about what we are trying to accomplish.

What we are trying to accomplish is, how can we connect patient data across organizations, states, regions, et cetera, and all of a sudden the focus shifted away from that term to, we don’t really need a term, we just need a way to do this.

So in a way, I think of the personal health record the same way, because to me, the term personal health record brings certain connotations and starts to put things in a certain box, but what does it mean, should it be this, should it be that.  I am just wondering whether the focus should be the personal health record as a term, or should we be focusing in on the whole concept of how do patients retain access to, and are able to take their medical data with them any time, anyplace, anywhere.

Then it is a subtle shift, but instead of saying personal health record is what we are going to be talking about, it is, let’s talk about how do we accomplish this.  Patients need to be able to have access to their data, and they need to be able to retain it and take it with them and carry it around.  So how do we achieve that?

So when you think about it that way, it may not keep us stuck in this thing of PHR versus other.  PHR may be a way to do that, but it might not be.  It might not be the right way to do it.  It might be that we need portals, it might mean something totally different.

So I am just throwing that out to think about, that maybe we should be thinking about what is it that we want to get out of that and achieve, and not keep ourselves aligned to this term PHR.

DR. HOUSTON:  I guess I am troubled by this.  Going back to some of your earlier comments, PHR to the public has a very specific meaning and an expectation versus EHR, which I think has a different meaning.  Maybe it is not to the public, maybe it is to me.  But I think there is an expectation not only that the information in it may be developed by the patient or provided by the patient, but the expectation of privacy and the use of that data is more limited and much more intimate to the patient him or herself, and maybe doesn’t have the expectation it will be used for public health and other types of purposes.

I think we need to be very careful that we don’t overstep the expectations of the public, as to how the PHR is going to be used by — or, the expectations of the use of the PHR.  I keep hearing this underlying theme like a land grab, people have the expectation of getting all this data, and I’m afraid that is at variance with what a lot of people really expect out of it.

I know it does come to the fundamental definition of PHR versus EHR and where are the bounds, but —

DR. GREENBERG:  Before Cynthia spoke, I was thinking that panels one and four, since we already wanted to move four up to two, might be a full day, and came off of what Steve said, too.  Maybe there needs to be a better understanding of both what is out there and what the potentiality is, et cetera.

Then I heard from Cynthia that they would look to — would appreciate the work group trying to explore the federal role issue, and it might also be of some interest to Dr. Braylor’s group.  I know this came up at the retreat, and he agreed that this was a very — obviously he is having to think about the federal role on all of these things, was something that the work group should do.

But it seems in a sense premature to be talking about the federal role if the work group doesn’t have a better idea of the federal role in what.  So that is the argument that could be made for focusing on these two panels in the one day, because it is only one day.  Then trying to come to some grips with that, and then be able to in a more targeted way ask what would be the federal role if this were the model or that were the model, or if it had this functionality or that functionality or whatever in a subsequent era, not too far away.

DR. STEINDEL:  Just a matter of caveat.  It is not clear to me, when we start talking about the federal role.  It seems to me there are a lot of federal roles.  One of them is to think about pilot projects, one to set up incentives in the broad sector.  But if we are talking about CMS, we are talking about a select population, with the federal government involved with most of the care the patients are taking.  You might think about setting up Medicare in some way that from the beginning, you will want to think about data being provided by providers into an electronic health record that we from the front end think about being transportable to a personal health record, even if we don’t get the non-Medicare information yet, we don’t solve all the other problems, where there is more of a monopoly somewhere, in the insurance end or the provider end.  The difference between electronic and personal health record is less of an issue.  You have already got a core entity that can do a lot of integration.

So it is not clear to me when we say federal role.  It seems to me there are federal roles, and the role we might think about for CMS is leading away from Medicare and maybe Medicaid patients might be different for the broad population.

DR. FITZMAURICE:  In looking through it, one of the things that I see is that we are always going to ask the users how do you use this, what tools do you need.  It looks to me like maybe we could use a little more time for consumers.

If I look at Joe man on the street, Joe man on the street, if he said, what would I do with a health record, a personal health record?  I would use it to measure my health status.  I want to measure it, I want to maintain it, I want to improve it.  So I go to the drugstore and I get my blood pressure taken.  Maybe I take my pulse, maybe I take my weight.

Secondly, I want it for the economics.  I want to account for the resources that I spend on health care, so what is my spending, what is my health insurance reimbursement.  Let me make sure that nothing falls through the cracks with this record.  Help me with my choice with health plans.  What am I consuming a lot of, and do I want a dental plan or not a dental plan.  Let me look and see what I have spent in the past on dental services, and guess what I would spend in the future.

Then thirdly, I want a health care record to support my providers of health care and medical services, including disease management.  I want to write down a medical list, or have somebody do it for me.  I want to write down my vital signs, the blood pressure readings at the drugstore, appointments with providers I have had over the past three to five years, and I want to record what are my health concerns so I don’t forget them when I go to see a doctor.

I think that is part of what the man on the street would tell us.  Maybe we could give five consumers three minutes each to say, what do you think a health record is, and what would you use it for.  Just a thought.

MS. WILLIAMSON:  To follow up with what Mike is saying, I know that the Cantor Foundation, that has been a major focus in terms of looking at how they can utilize that personal health information, how they can capture that information.  So that might be a good representation for that type of panel.

DR. LUMPKIN:  Cynthia.

MS. BAUR:  At the risk of alienating my CMS colleagues, I want to say this, anyway.  I am concerned about a great deal of focus on CMS and the populations that CMS currently deals with, unless we start looking at people who are going to age into Medicare say a decade prior, so people who are in their 50s to early 60s.

The reason I say that is, there is nothing in user data that indicate to me that anybody who is currently in Medicare is somebody who is going to go out and really embrace the use of these technologies at this stage.  It is not that we can’t learn something about this, but I think just in terms of what we want to learn about potential users, that is just not the user group I would go after.

I think we need to look at different populations, how they currently are using technology, how they might want to use technology in the future.  I just think anybody who is currently in Medicare is just not the number-one group I would go after.

So I think it is not that CMS is not an important place to look and to do pilot projects, but I just think there are many other places, many other programs going on throughout HHS that deal with many other segments of the population, that also have the potential to do some experimentation with this functionality.  I just would hate to lose sight of it with focus on what CMS is doing or could do.

DR. LUMPKIN:  I’m not sure I agree.  If you look at the work that David Lansky has done, and with connecting for health and some of the surveys that they have done, the people who are most open to the concepts behind the personal health record are those who have chronic illness and who are regularly receiving care.  So the population, particularly the Medicare population, is going to be much more likely to fit within that category.

Second is, one of the groups that we talk about hearing from is AARP, because in fact, they see this as being an important market.

So I’m not sure if you are right or if you are wrong, but I think that there are enough questions here that before we can even consider what the federal role is, what I am hearing and what I want to bring together, because we are out of time, and it has been a long day, is that we don’t consider this to be the end of it, that we spend the first day really exploring what are the ranges.

Eduardo raised the issue of a personal health record.  That is a term that has not been used by this work group.  We called it the personal health dimension.  Our conceptual model of a personal health record isn’t an electronic equivalent of paper that collects your stuff, but it allows the patient to be an active participant in their health care with decisional support.  So we had that vision when we first crafted this concept in our report in 2001.

So the thought is to take the bones of this, looking at panel one and panel two, and also panel three, where we would bringing people from the outside, perhaps looking at the people who are doing portals, but also other vendors, as well as AARP.

I am a little bit — I am intrigued, but I don’t think that a hearing is the way to hear from the public.  I think the way to hear from the public is either through focus groups or some other way to get their opinion.  I think we probably ought to hear from Lansky and hear what they have done, because I know that they were funded to do that, to get the public’s opinion.

Based upon that, I would suggest that our hearing would not be a full-day hearing.  We would leave adequate time, either half a day or a third of that day to synthesize and discuss, which we do too infrequently after our hearings.

DR. GREENBERG:  Absolutely.

DR. LUMPKIN:  And to plan out the second day, and to determine if we have learned enough to enable us to then plan that second day of hearings, or maybe a third day of hearings, on what else do we need to know, and  what else do we need to do in order to get to the point of actually making recommendations on what the federal role is.


MR. BLAIR:  I very much like your suggestion. Are you envisioning that the issue of who the public trusts with their health care information is one of the topics that is either going to come from that study or is on the agenda?  I feel like, in addition to the technical issues, the standards, issues, the data content issues and the model issues, I think we really need to understand who the public trusts with this information and who they don’t trust, because we could create an absolutely wonderful, beautiful, efficient model, and if the public doesn’t trust the custodian, we will have wasted a lot of time.

DR. LUMPKIN:  I think that is a little bit premature, because that is already assuming that there will be a custodian.  So I think that — let’s come back to that question.  Once we get this framed well enough, there are ways that we can begin to answer that question.  We could approach the Pew and the Internet project and say, can you include this as your next round of surveys.  There are a whole host of ways that we can try to answer some of these more specific questions, when we better understand what it is that we want to know.

DR. FITZMAURICE:  You mentioned something that is intriguing.  I don’t think NCHS has ever had a focus group, where you gather a focus group and then we sit around and maybe have a moderator, and maybe two hours wouldn’t be enough to do it.  But that might be an interesting way to hear from the public.  It might be something we would consider.

DR. LUMPKIN:  I think doing focus groups in order to try to find out is something that is a way to do that.  I don’t see us as a committee doing that, but getting the results of focus groups.  That depends upon — and I don’t know to what extent we would have funding to do that, or if we would look to the world of philanthropy for resources.

DR. GREENBERG:  There are certain requirements for clearance, et cetera, to do focus groups.  I think it would be better for the committee itself not to do a focus group, but to certainly encourage others to do focus groups.

Certainly parts of the Department do focus groups.  We did focus groups at NCHS related to some of our surveys, developmental work, et cetera.  But we have certain clearances we have to get from OMB and all that.  So I would agree with you, that this is probably not the role of the committee to do it.

DR. DEERFIELD:  Can I just clarify, before staff starts to put names and panel structures to this?  Do we want this range of diversity?  I am hearing mostly that apart from David Lansky, it is going to be all folks that are already doing it only.  So our only input as to what consumers want and need will be David Lansky.  We don’t want AARP.  Or we do want this?

DR. LUMPKIN:  We do want AARP.

DR. DEERFIELD:  Okay, I want to get that on the table, that whatever way we can come up with appropriate ways to make sure that we have sufficient input on the range of consumer understandings and expectations, that we do want that on the same day.

DR. LUMPKIN:  Yes, I think again, let’s look at AARP as the prototype of the consumer group.  They actually thought through far enough where they are producing a product.  We don’t necessarily need to have an organization that is considering producing a product, but we do want a consumer group, not to say what do you think about personal health records, because that is not going to help us.  If they have already thought it through well enough that they may have an established position recommendation, then I think listening to them maybe useful.


DR. STEINDEL:  Just as another thought I had to dig in my brain, I was told the other day, there is a federal effort that is compiling personal health records from migrant farmworkers.

DR. DEERING:  No, it is the state of California.

DR. STEINDEL:  It is the state of California?  That might be interesting.

DR. DEERING:  And it is successful, highly successful.

DR. LUMPKIN:  We have a plan.  I don’t think that we are going to have time to go over the rules of the road.  So let’s perhaps continue some of the virtual conversations that we have had on that.

DR. DEERFIELD:  Can we talk schedules for a minute?


DR. DEERFIELD:  Just to remind people that I believe it is Monday the 20th, 3:30 to 5:00, that we do have a conference call, at which time we can do the following.  First of all, staff will have tried to put names into some of these slots, so we can confirm whether we have got this one right.  That would be a time, we would hope, to begin to look at rules of the road.

I do want to point out to people that November 12, which is the only day that almost everybody said they would be available, is the day after a federal holiday.  So just to bear that in mind.  Also that we are locked in now for the 12th.

Then the issue arose, was there any merit in considering a non-Washington, D.C. location to facilitate travel for people, given that date and that circumstance of one day.  I believe we heard from Jeff and from Simon that you might not actually be able to make it for a one-day hearing in D.C.  So the issue is, —

DR. LUMPKIN:  Chicago?

DR. DEERFIELD:  Chicago, Denver.

MR. BLAIR:  One day, I could fly into Chicago and fly back the same day.

DR. LUMPKIN:  That is no longer convenient for me.

DR. GREENBERG:  The rationale for not having it here would be because of West Coast staff?

DR. DEERFIELD:  Members.

DR. GREENBERG:  Excuse me, I meant members.  You will certainly have fewer staff if you don’t have it in Washington.  Of course, the first priority is to have members.  The fact that the day before is a holiday — actually, I am going to be in Chicago for another meeting.  I would love it if it was in Chicago.  So I don’t know.

DR. LUMPKIN:  Why don’t we do a poll offline?  Simon.

DR. COHN:  It really is not a comment so much about that meeting, which I may not be able to make regardless of where you have it, but I’m just wondering, given that this work group is getting an increased work load, whether — for awhile we were having two-day meetings.  We have done one-day hearings.  I know generally it is problematic for many of us.  It gets to be that we travel longer than the meeting is.

So just as a frame, one might want to think of beginning to have slightly longer sessions when we actually do get together.

DR. LUMPKIN:  I would agree.

MR. BLAIR:  Do we also have the availability of using new technology like — I haven’t used it yet, but Web X or something, where we could meet without flying all to one city at the same time, but still have more interactive conversation than a conference call?

DR. LUMPKIN:  We can explore that.  I’m not sure that technology lends itself to a hearing.

MR. BLAIR:  Oh, I’m sorry, certainly not a hearing.  Sorry, I was thinking of —

DR. LUMPKIN:  And we are going to do our next meeting by conference call.

DR. GREENBERG:  That is the 20th?

DR. DEERFIELD:  I would only like to say that it could work for a hearing, to the extent that you can project the slides, and people can watch the slides while they are listening, since many people have these very exciting Power Point presentations.  I think it can work, to facilitate those who can’t travel.  It could be a step up from just listening on the telephone in a hearing.  We will explore it.

DR. LUMPKIN:  Okay.  Do we have anything else to cover?  I see the group being anxious.  Then we will be talking to everyone on conference call soon.

(Whereupon, the meeting was adjourned at 5:45 p.m.)