This Transcript is Unedited
Room 705A
Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, D.C. 20201
AGENDA ITEM: Welcome and Introductions –
DR. SIMON COHN, Chair Pro Tempore
DR. COHN: Now, good morning. I want to call this meeting to order.
This is the first day of two days of meetings of the National Health Information Infrastructure Workgroup of the National Committee on Vital and Health Statistics. The Committee is the main public advisory committee to the U.S. Department of Health and Human Services on national health information policy.
I'm Simon Cohn, a member of the Committee and the Associate Executive Director for Information Policy for Kaiser Permanente.
I'm actually chairing today and standing in for John Lumpkin, our Chair, who is phoning in and I think will make some comments after we're done with introductions. Obviously, as we commented just now, John, hopefully you will be feeling better soon, and we're sorry that you were overused during your holidays.
Obviously, I want to welcome fellow Subcommittee members, HHS staff, and others here in person and welcome those listening in on the Internet. And apparently we are not on the Internet yet; we'll let everyone know when the Internet goes up.
Obviously, for when we are on the Internet, I do want to remind everyone to speak clearly and into the microphone.
With that, let's have introductions around the table and around the room. For those on the National Committee, I would ask if you have any conflict of interest related to any of the issues coming before us today, would you so publicly indicate during your introductions?
With that, Mary Jo, would you like to start with the introductions?
[Introductions. No conflicts of interest stated.]
DR. COHN: And John, would you like to introduce yourself?
DR. LUMPKIN: I certainly would. Can you hear me?
DR. COHN: Great.
DR. LUMPKIN: My name is John Lumpkin, and I am a Senior Vice President of Robert Wood Johnson Foundation and I am Chair of the Workgroup and the full Committee.
DR. COHN: Okay. Do you have any conflicts of interest today?
DR. LUMPKIN: I guess I should probably state that, as you note, there are two of our staff who are there and we're very interested in the subject as a co-funder with the Department, which is not a conflict but I thought
I should at least share that.
DR. COHN: Okay. And I guess I should chime in also that my organization, Kaiser Permanente, is of course very interested in this whole area, and actually we're having one of my colleagues, Dr. Andy Wiesenthal, testifying this afternoon, so in the interest of full disclosure that everyone should know. But I don't think the topics he will be discussing will be obvious conflicts of interest.
Linda?
MS. FISCHETTI: The Veterans Health Administration will have two testifiers as well. I didn't mention that earlier.
DR. COHN: Okay. Linda, thank you.
Okay, now the focus on the next two days is on personal health records, and actually this is the second set of hearings on this topic and I'm sure not the last.
This morning, we begin with a discussion of Federal policy issues related to personal health records. I think first, Cynthia Baur. We're happy to have you here and thank you for taking the lead.
And then David Lansky will be following up with additional information and perspectives, followed by an open discussion.
Our first panel of the morning, which will be after the break, is on the consumer perspective, which will be Panel 1, and then it'll be followed in the afternoon by a second panel relating to the consumer perspective.
In the mid-afternoon, we then have a panel on sort of provider-based perspectives relating to personal health records. Then there'll be a discussion as well as open mike late in the afternoon.
As always, I do want to remind everyone that we do welcome comments and questions from those in attendance related to any of the issues coming before us today. We will have a specific open microphone period late in the afternoon in case anybody has any brief statements they want to make.
We also, of course, for those on the Internet listening to transcriptions of this, do welcome emails or letters on any of the subjects coming before us today or tomorrow.
Now, today we hope to adjourn by five o'clock. Tomorrow, we'll start off about 9 o'clock.
My understanding, in the agenda it appears that there's a discussion and then a panel; I think we're going to try to move the panel forward so that becomes the first order of business tomorrow morning, if we can do this logistically, and then have discussion after that, with the intent that we will be adjourning by about 12 noon tomorrow. Hopefully, that is agreeable to everyone.
Any questions or comments before we lead off into the first panel? John, do you actually have any opening comments that you would like to make?
DR. LUMPKIN: Sure. I think I would just like to add emphasis that as a Committee, when we introduced our vision of the national health information infrastructure almost four years ago now, we believed that if this was going to work, it needed to work in three dimensions.
And one was the health care provider, the other one was in the population health dimension, and the third was the personal health dimension, of which a personal health record is an important tool in that respect.
And I personally firmly believe, and I think that others in the Committee that really for us for us to make the progress that we're going to need that patients need to be in a position of being able to be active participants in their care.
Clearly, those studies that have come forward, the chronic disease models, others, have demonstrated that when patients are actively engaged in the management of their own illnesses, partners with their care givers, the outcomes are much better.
And so, having this hearing today and tomorrow, the further our understanding of what's going on in the field and what may be needed will be an important step in enabling the information technology-based transformation of health care, improving quality, effectiveness and efficiency.
So I would like to thank everyone who's there in person, even though I could not make it myself, and let's have at it.
DR. COHN: Okay, John, thank you very much.
I also I think would emphasize, as John has, that many people are in the midst of writing responses to HHS from the requests for information on the national health information network and at least in some of the draft responses I've been seeing and been asked to comment on, I'm seeing more and more thought being put into the issue of how patients relate and even non-patients, healthy people who are not patients, relate to the issues of electronic health records.
And obviously the issue of personal health records is really, I think, an upcoming discussion item which I think we'll see a lot more thought being put into over the next year.
At least, that's the opinion I'm getting as I'm seeing these responses.
Now, with that, Cynthia, would you like to lead off? And we'll let Cynthia and David both make your presentations and then we'll have Subcommittee discussion, actually workgroup discussion. Please.
AGENDA ITEM: Presentation – CYNTHIA BAUR
MS. BAUR: Thank you, Simon.
Again, I'm Cynthia Baur from the Office of Disease Prevention and Health Promotion and the eHealth Advisor within the Office. And I'm just going to speak for a few minutes to provide a frame on why ODPHP had asked David Lansky, when he was at FACCT, to undertake this study.
For several years, ODPHP has recognized the potential of personal health records as a public health tool to enhance traditional prevention activity.
The Department has many large programs such as Medicare and the chronic disease programs, and although they affect a large number of people, they do not reach many segments of the public, particularly those in need of preventive health information and services, nor do these programs cover many of the prevention and information activities that HHS is already invested in.
Personal health records are a unique mechanism to engage individuals at different stages, different life stages, in their own health, and we also see them as a novel platform for prevention activities that could include information, recommendations and attitudinal and behavioral messages.
Even though PHRs are tools for individuals for their own health management, ODPHP perceives that PHRs can be used as a type of prevention tool that can have broad population effects, and apart from what happens with EHRs, intelligently designed PHRS that are supported by sound distribution strategies have the potential to be a mass phenomenon.
So therefore we commissioned this study on the Federal role in PHRs to identify the different perspectives and strategies that were emerging across HHS as well as at DOD and VA. ODPHP is particularly interested in learning about strategies that envision PHRs as public health-oriented preventive health tools.
The findings of the study are intended to be useful not only to our office but also to the agencies as they develop their own activities.
Just to be clear, the paper, or the study, was not intended to be an inventory of what Federal agencies are doing in PHRs; it is intended to identify points of consensus and disagreement as well as critically analyze the choke points, decision points, and opportunities that the agencies are going to face in the near term.
So with that, I'd like to turn it over to David for a preliminary report on the findings from the study.
DR. COHN: Okay. And, David, I do want to tell you that we are on the Internet at this point.
AGENDA ITEM: Presentation – DAVID LANSKY
MR. LANSKY: Good morning, everyone. Thank you, Simon. I'm glad to be with you again.
In the past, I've spoken with you about some of the broader research that we at Markle and Connecting for Health have done regarding personal health records and public interest in them.
And as Cynthia said, this time -- as part of the continuity of my own work with FACCT in the past and now with Markle -- to support the program here in looking at the various Federal activities regarding personal health records and try to distill from what we can look at what's going on today, what are the common and divergent activities, where are their implications for policy or for program design that we should all be sensitive to, and just essentially distill what's going on and then feed it back to people in positions to influence the programs here.
We are at a midpoint in this project, so I want to caution you that what I'll report on today is preliminary. We have a couple more months to distill what we've learned from our first round of interviews and discussions. And I would actually hope in the course of our discussion this morning that you'll provide us with some perspective and feedback that we can capture in the remainder of our work and the report.
In a nutshell, if I were to summarize what I think we've discovered so far, at least what I've discovered, is that the perception of the possible value in applications of PHRs from the very diverse Federal programs with an interest in health is expanding, not contracting or converging.
We have more good, creative opportunities to explore how to use a personal health record and the related systems in support of not only Federal programs but Federal interests. And I'll talk more about that.
Those ideas are expanding at the moment, and part of what we will probably suggest in our report is there needs to be some degree of at least not contraction but coordination in how the issues that are common to all these expansive ideas end up being mapped together.
And I think further, following on Cynthia's point, that the question of what are the appropriate government roles is probably at the heart of what we'll be addressing in the report.
We certainly don't know the answer to that question, but our sense already is there needs to be some focused discussion, and this may be one of the important forums for that discussion about – this is a new area; it provides new opportunities, perhaps new risks, and should be viewed very carefully as to where the government can be most appropriate and effectively involved.
Let me summarize what we've done so far and what we are observing so far.
The scope of the project is to review what we can of current activities and interest in personal health records and related services, identify what the policy implications may be from the current or projected activities, and then suggest at least a framework for considering what the appropriate Federal roles may be as this field evolves.
You see on the right a list of the agencies that we have spoken to one or more representatives from so far. I think we had 13 formal interviews up to this point.
I should mention that our team for this, working closely with Cynthia, has been Susan Kanaan, whom many of you know, helping us with both research and writing, and Josh Lemieux, who has been a FACCT employee, and myself. We've been doing the bulk of this work.
I won't directly cite or quote any particular reports from any of these agencies, but I'll try to give you a distillation of what we've heard so far.
Maybe it's self-evident, but the fact that all of
these agencies, of very large scope, have an active interest and planning activity around PHR is itself an important point.
And some of them are talking to each other, some are not; some are aware of other activities that overlap, some are not. There is not, to this point, a consolidated or coordinated effort to have these different Federal initiatives at least testing each other's ideas with each other for possible overlap or conflict.
In terms of why the Federal governmental programs are involved in personal health records at this point, certainly a central guidepost is the President's announcement earlier, last year, that over the next 10 years we would like to see a universal availability of a personal electronic health record and there's obviously great support for that from a number of people in Congress and elsewhere in the agencies.
It is perceived that the personal health record may be an important tool in achieving, as Cynthia just said, a number of goals of the major Federal health programs, including public health goals.
Among these goals are patient-centered care; greater consumer involvement in the health care system, as John said in his opening; improved chronic care management, which is of course a major initiative of CMS and others at the moment.
And I think what emerged from our interviews on this occasion has been a lot of the Federal agencies that have been information suppliers or publishers or disseminators see the personal health record as a new distribution vehicle for the enormous body of health knowledge that's available through Federal activity.
I think a modest distinction I want to raise and stay with this morning: To some degree, PHRs are seen as a way to extend current Federal programs, simply a new distribution technology for an existing commitment or strategy that a Federal agency may have.
Secondly, it is a new platform, and therefore even a new strategy, to achieve goals that maybe haven't been fully articulated or have been articulated only in a very strategic sense but have not yet been put into programmatic terms.
And that's probably where the more innovative and edgier thinking is going on as a way of extending strategic policy directions into the program world. And I'll give some examples of those.
Another reason for the Federal role in PHRs is the broad understanding that the Federal government and its programs will be leaders in American health care willy-nilly and it is very important that the positioning that the Federal government takes with the NHII broadly and with the personal health dimension specifically will be a defining channel in whatever happens next.
Perception that unlike many other entities which have particular interest in the health care system, the Federal government has the most distinctively public interest responsibility, and to the extent the PHR will touch upon the public interest and the public welfare, then the Federal government needs to speak to the deployment of PHRs with some consciousness around that interest.
While there may be a very successful private market in offering products and services that enable PHR functions, they may not ultimately address a larger public interest, and therefore there has to be some Federal attention to this.
And finally, I think as many of you have worked very hard on, the question of interoperability and connectivity in the health care system is considered to be an underpinning of the viability of PHRs. PHRs are not widely perceived to be a very powerful medium unless and until there is also connected EHR information environment. So the Federal commitment to Dr. Brailer's office and elsewhere to the interoperable health information network is considered a prerequisite to aggressive deployment to PHRs.
Those are all reasons for the Federal agencies to be involved.
At the same time, each of these agencies has its own purpose, and multiple purposes, clearly, and it's just worth reminding ourselves that across the agencies that we collectively work with here in the government, there are many roles, which implies different ways of involving with PHRs.
Many of the Federal agencies, of course, are providers. CMS in particular and others are important payers, extremely important payers. There are regulatory functions, research and dissemination functions, public education and outreach functions including the prevention area that Cynthia mentioned, policy-making and policy-setting activities which facilitate larger national initiatives. And we also don't forget the nation's largest employer.
So, each of the agencies which touch upon each of these roles seems to have a finger in the PHR world.
And we've talked in this setting before about the question of what is a PHR, and I'll just remind you of some of the categorical issues here. First, that there is not a uniform understanding or definition of it. And in our interviews with the Federal agencies for this project, we did not encounter a uniform understanding of what PHR is, or should be, which I think several of the people we talked to thought was a strength, that this was a very important time to allow there to be pluralistic activity, and if anything, a too-assertive Federal statement that "this is a PHR and this is not" would be a premature limitation on the development of the field.
And they actually were, I think, humble and cautious in saying, while we think we could be very aggressive in this area, we should not be, because we don't want to preempt other activities either of other agencies or of the private sector.
The Connecting for Health project that Markle and Robert Wood Johnson have supported has identified some of the attributes of PHRS without saying they're necessarily part of a definition: That the patient has control and understands what's in their personal health record, they have a broad ability to access the contents of that record, it addresses criteria of privacy and security, and there's a transparency to the construction and access of that record.
We talked in the earlier report about some other attributes of the PHR, and here we note for your benefit that we realize these are illusive, or not widely available, attributes of personal health records. That they be longitudinal, or lifelong, is a very difficult thing to achieve in our very fragmentary and pluralistic system. That it contain information from all health care providers is difficult to achieve. And that information exchange, given the limitations of our national platform, be easy is difficult to achieve today.
And finally I want to mention the reality, and I think the Federal agencies we talked to understood the reality, that there are many flavors of implementation. Regardless of what attributes or definition you ascribe to, today, in reality, the way these things are going to be offered to the public vary very widely.
The medium, whether it's on the Web, whether it's on a CD, whether it's on paper, whether it's on a USB stick, the media of distribution and support vary widely. The contents, the data contents, vary widely, and the functions vary widely.
So, with lack of uniformity on any of these foundational elements, we see a great variety of manifestations of PHR across the Federal agencies.
As I mentioned earlier, there are several different categories of ways the Federal programs are considering being involved with PHR. One is to, as I said earlier, extend and enhance current "business as usual." It's a new platform to deploy something an agency is already interested in doing.
Secondly, it may enable new agency roles and activities, and the agency may go into new areas and look at the wider health care environment.
In this case, there may be a possibility for good or ill of the Federal government playing a role that it has not played before which may be perceived as stepping on another entity's role in the private sector or in other parts of the public sector.
And then, thirdly, a number of people spoke to us about their vision, and, as John suggested in his opening comment, that the PHR is an entry tool; it's a wedge into fundamentally transforming how health care is organized.
And here, of course, is the most complex, uncertain and risky area of activity as the PHR is considered to be a new means of health delivery and what Federal role might be engaged there becomes a concern.
Let me just tick off some of the things we heard that the agencies have mentioned to us that they are now doing or anticipate doing.
I just mentioned the visioning and strategic leadership category. People perceive the PHR as a way to improve quality, safety and efficiency at the foundational level to fundamentally change the opportunity for patients to get high quality and safer care.
It's a platform for envisioning a new health care and public health system for these goals.
People have very bold visions for what this technology can bring about, and an important and probably very optimistic part of this work has been to hear how many people and how many agencies see this as the first opportunity really to completely capture the relationship with the patient and give them more control over their health care experience, similarly providing direction for modernizing and redesigning the delivery system in health care, and finally, and very importantly for many of the Federal agencies, providing a platform for bio-surveillance, drug event monitoring, adverse event reporting, really creating connectivity to the public around health information in a two-way exchange.
The second category we heard a lot of almost, I could say, unanimous agreement about was the support for standards-based approaches to health informatics broadly and health data, capturing data exchange.
I think everyone we talked to agrees that there has to be increased standardization in the information infrastructure and the Federal agencies are critical to supporting that process. Some of the distinctively Federal roles are:
Providing some integrating tools and functions that the private sector won't necessarily do in individual segments.
Giving attention to some areas that have not yet gotten a lot of intention, and in particular the question of patient-supplied data, the patient reports of health status, symptoms, medication adherence and so on, which don't have standards in the clinical-medical arena, but if we begin to capture this data from patients, there will need to be such standards, and that may be an opportunity for Federal leadership.
Cutting across the various standard-setting bodies is a Federal role.
There was a perception the work of CHI that has been important, continues to be important, as a unifying Federal statement about standards.
And in the same fashion, creating a tipping point: The Federal action where it's consolidated and clear does indicate to the entire health care marketplace a direction to proceed.
A third category is regulation on privacy and standards, which was essentially to support and extend the HIPAA privacy rules and some attention to both FDA and CMS around agency regulatory functions and how the PHR might affect those.
I say parenthetically it didn't come up in these interviews, but that's a particularly important consideration at the state level and it may be worth some additional discussion about the state-federal interplay on the privacy and data regulatory functions.
The fourth category of commentary we heard was in facilitating the evolution of PHRs themselves, of the product or service we think of as a PHR.
Several agencies used a phrase like "showing the way" – that is, the very significance and scale of the Federal programs, by taking action in the personal health record space, especially in terms of a large-scale deployment, will influence what else happens in the country and what industry does.
Similarly, already through the VA and other programs, the ability to do early deployment and collect data on early utilization of PHRs and the support of research around that will continue to be an important role. The opportunity, because many providers have contact with Federal programs, to reach out to providers about how best to participate in PHRs was suggested to us.
And then there's a number of Federal agencies interested in what you could broadly think of as social marketing, or public education, around how you as a consumer, a beneficiary, can take more advantage of your health information, using these tools.
And finally, and maybe most obviously and has actually probably moved the fastest, has been to provide direct services to covered people, whether they're employees, military families, veterans around the personal health record as part of their health care package. And that includes both developing personal health record product and tools and potentially purchasing them through the private marketplace.
A second component of that direct service element is to be a data supplier to a private sector PHR environment. So you could imagine the Federal data resources being made available through a standard interface to those who offer PHRs to the public as a way of populating the PHR.
And then, thirdly, and we heard a great deal about this, was the populating of other Federal content into the PHR through a variety of means. And there are many sources for that.
At this preliminary point in our digesting of all this information and perspective that we've had, and as Cynthia said, we haven't attempted to do an inventory or to look closely at specific products and programs – this is a very modest project – but essentially we've distilled two categories of issues that deserve some attention, we think.
One is in a category which is not particular to the Federal government or Federal programs -- it's just this is the state of PHRs today and some of the issues that everyone, including the Federal agencies, need to think about – the first is privacy and information control, including how the public perceives privacy and information control, independent of what actual controls and security considerations are in place.
The second category is security, and again, public perception about security of health information in this environment.
The third category are legal issues.
The fourth are cost – who pays for, who supports, the deployment of PHRs.
And finally is interoperability both among PHRs – if I go from one health organization that provides me with a tool to a new health organization, are those tools going to be interoperable? And in turn, is my PHR interoperable with the health care-installed environment?
The second category of issues, which you see depth on, is those that are distinct to the Federal agencies, where we heard Federal officials tell us, here are things that are on our minds and that we need to address or have help addressing.
So the first one is: How do the anticipated roles in and uses of personal health records relate to the larger health objectives of the Federal government broadly, of HHS as one important agency, and of the individual departments and agencies within HHS?
I think my sense – this is an informal observation – is that we have people, at the ground level in some cases, following and developing ideas around personal health records and now asking themselves: How are these compatible with, how do these best extend the larger, strategic imperative of my agency? So there has to be a knitting together of practical program issues and strategic issues.
Secondly, under financial costs, depending on what role these different agencies might choose to play in support of personal health records, what costs will they face and who will pay those costs and how will those costs be absorbed? This again is true of the larger question, but the very specific question for the Federal programs.
A third question, which is again a much broader issue which has a great deal of attention right now – as Simon said in the opening – is how will the Federal government promote interoperability broadly, and in turn, the PHR piece of interoperability?
The fourth issue that will need consideration, and this probably surfaces broadly for discussion across the agencies, is whether there needs to be some consistent or even standardized approach to a personal health record across all of the Federal activities.
So, if you will, if DOD takes a particular approach to PHR and VA took a different approach and Medicare a third approach, for a person who is going to pass across all three of those programs in the space of a few years, is that a problem or not, or to what degree should there be uniformity – to what level of complexity should there be uniformity across, let's say, those three agencies in the way they implement personal health record solutions?
And this is a question both at a broad policy level for the nation and a more pragmatic policy level for the Federal agencies themselves.
A footnote, an important footnote, a corollary to that question, is: Should all, or any, government agency define what a PHR is?
If any one major Federal agency were to say, here are the requirements that we set for a PHR, whether it's for reimbursement or for interfacing or for data access, as soon as a major Federal agency has done that, there will be a ripple effect across the pond of all the other Federal agencies and the private sector.
At the moment, some Federal agencies have contemplated setting such requirements. And again, as I said earlier, many of them have looked across the abyss and said, wait a minute; we'd better not go there. But it could happen, and there needs to be some consideration to whether or not that's a good idea.
If they were to do that, if any important agency or collection of agencies were to set a Federal definition or requirements for a PHR, what should be the criteria that that agency should use in doing so? What are the categories of criteria they should use?
And this, of course, goes back to my first slide about what is a PHR and are we ready yet for anybody to say this is what it is for the purposes of reimbursement, data sharing, qualification for some programmatic opportunity.
The fifth category are the privacy concerns and issues, in particular the area where the Federal agencies are directly offering a PHR and either acquiring or permitting a patient to acquire personal health information and store it and transmit it with some amount of Federal imprimatur or Federal funding or perhaps Federal certification.
Back to the last point: What are the specific privacy concerns that arise, again, either in terms of actual legal risk or perception on the part of the public of the Federal agencies having additional access to or support of PHI in this context?
Some agencies, in the case of direct service providers like the VA, and maybe less controversial but in the case of an intermediary role where a Federal agency may be inching its way toward being a repository of personal health information by the way it supports a personal health record, does that create a new issue either of legal or perception risk for the government?
Number six is the flip side of number four: How should the government position itself vis-à-vis the private sector? In particular, where we have an emerging private sector industry – and you've heard testimony from some of these vendors in the last hearings – we have an emerging industry of innovators and developers within the health care system and the technology industry who will hopefully continue to be creative and innovative in what they develop.
What should the government posture be toward these innovators? Is it supportive? Is it observant? Are you providing data opportunities in partnerships with these innovators? Are you contracting with them as vendors to Federal programs, and if so, using what criteria or requirements, and if so, to what degree does that action itself limit innovation? How do you construct a relationship with the emerging PHR environment which both stimulates innovation and advances the Federal agenda?
Given the three largest players potentially here, the VA, Department of Defense and CMS, and they are perhaps the most likely to be in the vendor space soonest and with the greatest potential influence, should there be some dialogue fairly soon to at least contemplate these implications of their positioning in this arena?
Number seven on here has to do with regulation and certification of the PHR. Many of the interviews we've had with Federal agencies and elsewhere have highlighted some of the risks of PHR activities that exist.
A totally unfettered environment where anybody can offer any PHR to anyone may create some risks to patients and their well-being and their privacy of information. Should the Federal government have any actions to identify those risks and consider regulatory or legal protections? By what process would the government come to a conclusion about that task, whether or not to play any role in that arena? Or is it appropriate at this stage to wait and see what emerges through private sector and Federal activity in the PHR space?
And number eight, we have a laundry list of other questions that have emerged in our discussions:
Do the Federal agencies emerging in this arena have the capacity in terms of technology, policy awareness, consumer awareness and so on to be effective in offering PHR services?
Is their track record credible with their own constituency or with colleagues?
Is there consistency within and across agencies about the way they are addressing these questions?
We've heard of some intra-agency where one agency has multiple PHR activities that are not coordinated with each other, and of course there are inter-agency differences.
And then, how will the public understand Federal action in this arena, and will they trust it? Similarly, how will the private health care provider networks and vendor industry understand Federal activity in this arena?
And I guess that raises the larger question of: What's the communications component to any Federal activity in the PHR space?
In terms of what we heard from our interviews that we would consider a consensus, first of all we heard very high level across all those many agencies I listed of interest in PHR. This is an important emerging goal and question for many agencies and very optimistically, in a time when a lot of us are, I think, frustrated with many other challenges in health care, people do perceive this as a fresh and positive opportunity, and very valuable, and should be captured and encouraged.
At the same time, people are fairly sophisticated now about the challenges of IT adoption and certainly the challenges of beneficiary and consumer engagement so that I don't think there's a naïve optimism but there is a serious optimism that can be supported.
The two roles I've mentioned several times are the ones that keep surfacing. The Federal government needs to be a leader in standards-based approaches including as it pertains to the PHR and it has to both encourage innovation in this learning period.
So the delicacy of both being a standard-setter but not creating barriers to innovation is the challenging line we heard a lot of people talk about and be very aware of as a difficult balancing act to solve at this point.
Similarly, on the next point, encouragement that the Federal agencies must balance what they want to accomplish, why are they using a PHR, for what particular purpose, and what metrics would they assign to their ability to achieve this purpose, and allowing there to be experimentation and innovation in the way these purposes are achieved.
Too heavy a hand will probably frustrate innovation and learning and too light of a hand may create chaos, and that's the balancing act a lot of agencies are talking about.
The question of what do we mean by Federal action in this arena is not resolved at all. It could mean an integrated, coordinated government activity or it could mean a lot of things being done with Federal funding and no particular coordination.
I think there's agreement, we heard, that there should be some degree of high-level coordination and conversation about what the goals are and how the different activities are moving toward achieving them and that that dialogue should include entities outside of government which are also very active in this arena.
Now, as I said, we have a couple more months of discussion internally in our project before we make recommendations to the Department, and I would hope today we'll have some conversation with you about where we are at this point.
But here's a preliminary sense, very preliminary, of what we see to be some of the issues that should be raised for further discussion:
There should be some kind of a vision about the purpose of personal health records and the associated functions in achieving Federal health objectives. Simply saying everyone should have one is probably not enough clarity to guide the more practical decisions, the policy decisions, that will have to get made as individual agencies do their part toward achieving that larger goal.
I don't think we want to over-stress consensus or alignment, but we do think there needs to be more awareness of activities across the government and some degree of coordination.
Some of the key issues that need to be considered are:
The Federal access to personal clinical data – what should it be, what's appropriate? And what responsibility does the Federal government have to access and use personal health information in support of Federal objectives?
Cynthia mentioned in the opening their Department's interest in preventative measures. A number of agencies have been interested in increasing prevention and health maintenance activities.
There is a potential slippery slope between a very broad educational message targeting that message to people about whom we have certain personal health information which puts them at risk for that information and then getting into a centrally disease management relationship with those people where more and more clinical information is exchanged with the government. Where on that slope is the appropriate place for the government to be?
What is the Federal role vis-à-vis the private sector? Do the Federal agencies facilitate a successful private market and personal health record services and products or does it displace that market?
And many of you have heard discussion of the opportunity of using some of the VA products and services as an open source, or public domain, tool. What does that do? If that were to happen, what does that do to the private market?
This is more of a strategic policy question: Are the Federal agencies interested in pushing more ownership and control of health information to the patient versus depending upon the provider networks that are currently contracted with or owned by the Federal government to be the intermediary of personal health information?
In a sense, how radical a vision of patient empowerment do the Federal agencies want to undertake? And what does that do to the relationships you have with other Federal contractors such as Medicare providers?
Thirdly, to what degree do all Federal agencies plan to make use of, support or refer to a single model of what a PHR is versus developing their own model of what a PHR is?
And if there's to be any coordination across that definition of what a PHR is, who is responsible for coordinating or enforcing that model?
Next, what are the Federal "policies" regarding personal health records?
Is there a body of Federal policy regarding personal health records that all agencies would conform to, including the patient's right to access, control, audit, authorize usage of their personal health records?
Should these be uniform across all Federal programs or should they be uniform nationally?
Are these rights afforded to everyone, in which case the digital divide issues in shorthand will surface.
Is there a risk of creating favorable health service access by virtue of a PHR availability to some groups of people and less so to others, which could be aggravated by issues of language, computer access, geography and so on?
So, hopefully that gives you kind of a window into what we've heard from the Federal programs we've talked to and what are emerging as some of the challenges that are facing and that the government as a whole will face, some of which spill over into private sector activities and some are really more program specific.
But I think we'll stop there and be eager for comments and discussion.
DR. COHN: David and Cynthia, first of all, thank you for some very interesting testimony and information. Let's take questions. Jeff, you first, then John Paul, and then I have a couple of questions and comments. Jeff?
Questions, Answers and Comments
MR. BLAIR: David, I'm really impressed. I think that the work that you're doing in the report is going to have absolutely tremendous value and I really was impressed and felt very comfortable with the way you've gone about doing it, even the initial issues where you wound up listing privacy and security as the top two issues and then you got down to the more technical issues after that in terms of interoperability and other issues. So, profound compliments.
Here's the only areas where I think I could make some suggestions.
One is that – and I'm going back to the '90-'91 time frame when the Institute of Medicine did the 18-month study defining the vision of computer-based patient records – at that time, we found that there was ambiguity, and one of the ways we reconciled that was to make a distinction between the record and the system.
And a lot of times when I was hearing the role or "requirements" of the Federal government, sometimes it was with respect to the system and not the record.
And I think that if we could begin to make that distinction, it'll be helpful because there's people who are concerned with the privacy of the content of the record and it, I think, will help to clarify that in many cases Federal guidance and support and service is to facilitate and enable this.
In other cases, it would make it clear that the Federal agencies might be asking for individual consent to sharing some of their information for national health care purposes.
And that kind of gets to my other suggestion. When you gave the presentation, it's clear you have a heightened sensitivity to the fact that for the public to trust and accept and adopt these, there's got to be a high level of trust. So it's not that you don't recognize that.
My thought, and I have to confess that when I was listening to this, I kept trying to think in terms of the folks that are sensitive about this issue, as I was listening to this, and before I came here, I had one of my assistants who I use sometimes as a bellwether and I said, "Well, the patient will have control of the health record." And the first thing that person said was, "Do you mean complete control?" Now, this is a person who is not involved with health care intimately. But that kind of was a little trigger to me, that they would zero on that so quickly.
Now, you've got that on your agenda. One of the things that I think might help as you begin to characterize this, I think the phrase you had was "Federal health requirements," "Federal objectives," or something like that, "Federal health care objectives?" Is that correct?
MR. LANSKY: One of the groupings of the policy objectives or of the specifications for a PHR?
MR. BLAIR: Either way. What it was was a recognition that while the principal goal of this may be for the patient to be able to use this as a tool to improve their health care.
One of the other objectives that is clear from many of the Federal agencies is they hope to be able to have access to this information, which is for a good purpose.
But if we characterize it in terms of the Federal government wants access, and I think that the privacy advocates would see that very readily, I think we have to be very, very candid and maybe go beyond phrasing it in terms of Federal requirements, Federal objectives, Federal desires or needs.
The Federal government serves the population as a whole. So actually patients and individuals are going to get a benefit from having some limited, controlled Federal access to the data. And I think if it was put in terms of the global or universal benefit as well as the individual benefit that it could defuse a fear that the public at large may have about this.
For example, if we were to wind up indicating that not only is this to help an individual with their ability to better manage chronic diseases and their own wellness but it also would have, with their assent, with their consent, the ability to feed in and be able to respond to national health care emergencies or bio-terrorism or environmental issues and phrase it in that way instead of just saying "federal objectives" – but do you see what I'm saying?
MR. LANSKY: Absolutely.
MR. BLAIR: Okay? So that people don't think it's just the government, which is "them," instead of the ultimate goal still being the population at large.
And my last observation on that is that personal health records and personal health record systems offer the potential to have dramatic improvements to our health care delivery system. But to do so, I think many of us are envisioning they're going to have additional information besides those that we look at for an electronic health record.
Potentially, they would wind up having information about environmental situations that the patient is in, and those things are the types of things that help us with these environmental problems and community problems and national health emergencies and contagious diseases -- information like where they work and geographically where they're located, and what other stressors, environmental stressors, they might be exposed to.
So, since that is of great value for these other things, it also is going to be the type of things that folks are going to be even more concerned about in terms of privacy.
So I think we have to focus on that very directly maybe in how you characterize the report or just keep it in mind so people don't feel as if there's a separate agenda here.
DR. COHN: Okay, Jeff, thank you.
MR. LANSKY: I think everything Jeff said is extremely valuable to us and it's important and some of the distinctions you raised at the beginning, Jeff, on the record versus system, we've heard that, and I think I am now seeing partly it's a nomenclature problem but it's raising a larger policy problem, and I think we collectively need to do some thinking about.
Frankly, the phrase "personal health record" has become a little bit of a problem because it does imply a document. And instead, what we're seeing is a series of functions which utilize a widely dispersed set of personal health information and the system, in other words, is where the action seems to be, and we're not even clear that there will be a record sitting anywhere in the traditional sense, and the implications of that, as you suggest, are extremely important.
And I agree with your other comments as well. I appreciate it.
DR. COHN: Yes, thank you. John Paul?
MR. HOUSTON: Probably going to dovetail a lot of what Jeff has already said, but I think you made a point that there really is no uniform definition or understanding of a PHR. And really only one point in your presentation did you really talk about or even mention a PHR. And I guess this is the thing that I still have great problem with, is what is the differentiation between the two?
And you mentioned interoperability and connectivity between the two, and I'm struggling. I mean, it's more of a common question I struggle with is where does one begin, where does one end? I think different people have different ideas; not just people but organizations have different needs as to what a PHR and EHR are.
So I guess I'm just struggling with where is that intersection or where is the overlap and how do we try to mediate that efficiently and effectively, because I think when we listen to Jeff's concerns and read through this presentation, I think it still seems that's sort of like one of the core issues in my mind, and once you understand that, then you can start to sort of answer the other questions he sort of raised and try to address some of the issues that you've raised in the presentation.
MR. LANSKY: I think short of someone prescribing an answer to that, this is like transition from gas to liquid. Then the metaphor we'd use in the past, tethered and untethered.
One of the comments we heard from some of the interviews here with the Federal folks was even if it's an untethered PHR, ideally it would be tetherable and that there should be design considerations so that this connectivity you suggested is enabled, that a person doesn't get stranded with an untethered.
Having invested a lot of effort in money or whatever they do into created a personal health record which then cuts them off from the health care delivery systems information resources would be unfortunate.
So this is kind of a one specific example of a challenge to the Federal activities, if there were to be agreement that that were true that there would not be Federal support for fully untethered PHRs that could not be tethered back to the system, assuming conformity to standards and so on. Right now, as you say, there's no clarity about that yet.
But the discussion has been surfaced in our interviews whether or not to support the – when you have a situation like the VA or the Kaiser example where you essentially have a consumer portal, which is very tethered, and has at this point relatively little opportunity for consumers to add information of the kind Jeff just talked about.
And at the other extreme, you have a completely independent, untethered product which may have great value to a patient but doesn't talk to their doctor or their hospital at all. So I think there needs to be an answer to your question, and I don't know what it is.
MR. HOUSTON: It's almost like there's a third category of the untethered; I'm going to call it the "sponsored health record." It's not an EHR, it's not a PHR; it sort of something that somebody sponsors for which there's additional access or rights or interoperability to or between.
And I think that maybe that's the issue – there really is another category or two of health records. I guess they all sort of together sort of make a continuum of health records. And again, tethered, untethered, and I think some of it has to do with public perception of rights and control.
DR. COHN: Yes, I think David's agreeing with you. Mike, we'll bring you on the list here; you're not up yet. We've got a long list.
My turn – which follows up along, John Paul, what you're sort of commenting on. And without trying to answer the question, I think one would observe and I think both Jeff and John Paul have sort of said the same thing, which is what you observed, that there's tremendous ambiguity in this whole concept.
I think where we talked about the personal health dimension, this was a vague enough, high enough level concept that it included sort of anything you wanted. But just as we moved from the NHII to the NHIM, you suddenly move down a level of granularity.
And I would suggest that not that we need to rigorously define what is and what isn't, but more almost like there needs to be an agreed to taxonomy of what these things are and how they all fit together.
And I don't know that it's just as simple as a continuum between tethered and untethered, which is not a very satisfying set of concepts. I somehow think that using consultants and whatever, we should have something a little more sophisticated that.
MR. HOUSTON: I'm a very simple thinking person, so –
DR. COHN: Yes, but I think that there's more to it. I think rather than describing this as a world where we're moving from pre-electric to electricity, I think we're really dealing almost the automobile market where there's probably a variety of different products out there and a variety of different approaches.
The other piece I'm sort of struggling with is this issue of: How does one evaluate direction? And it's really that issue of metrics. And it seems to me that there may be more agreement both in the Federal government and in the private sector about metrics, about what you want to get out of all of this at the end.
And I would observe that, for example, for provider health records, electronic health records, I think we're all aware that there's many ways to implement and many things that one could design, some of which are provide quality, patient safety and cost effectiveness, some of which probably just add more money and more cost and maybe even decrease quality in the health care system.
And certainly, as one looks at all of these things, one needs to sort of think about, I mean, are those the metrics we're going to use for personal health records? What is it that Federal programs might – indeed, there's a research agenda or some level of disagreement; how are we going to converge as we go along, and what metrics might we use?
And once again, I'm just sort of thinking of you as writing a report, things that I'd like to see in it. So that's just my comments.
Steve, I think you're next.
MR. STEINDEL: Thank you. David, it's always hard to ask questions or make comments after one of your talks because, as Jeff indicated, and others I'm sure as well, it's very interesting, complete and thoughtful.
I do have two sets of comments, and I think they're more of comments than questions. So the first I'm going to phrase as a question. And you had CMS on there as one of the agencies that you spoke to, and I think one of the things that you should address in the report is: What is the role of the payer in a personal health records, whatever form it takes?
And this gets to some of the comments that people were making concerning privacy, confidentiality of information. You know, how does a payer go with this information? What are they using it for? What reasons are they looking at it? And I think that should be explored in the report.
As Jeff indicated, it would give people a better sense of where this is all going. And like I said, I phrased it in terms of a question because I think you need more time to figure out an answer to it.
The second is in regard to the sets of discussions that John Paul and Simon just had, and I wrote that down earlier, and as we spoke, I changed my title, because the way I've been looking at PHRs over the last few years is I said I've now come to the mind where there's four types of PHRs, but I'm changing that – I'm saying there's four roles for PHRs, because I think "type" is wrong because, as we've seen, it really is a continuum.
And these things that we've been referring to as PHRs and with nomenclature that's been very vague and hard for us to get our hands on have morphed roles, overlapped roles, tethered versus untethered versus tetherable – that was an interesting phrase – shows how these morph and change and how we need to discuss that.
And what I defined as my four roles, and the first one I talked to roughly is the amazon.com model, and this is where you order something over your PHR, and we're going to hear about some of that today, you know, where people use this as a portal to refill prescriptions and schedule appointments et cetera, and you can get, in some of these cases, an inventory of what you've done through this portal.
And the second is a view, and with limited comment type approach, you know, which we've referred to as the tethered PHR, I think, in some cases.
And the other is what I've just referred to, for lack of a better term, is the full bore PHR, you know, which has everything. It's your health record forever and allows tethering and untethering and is what the President generally envisions when he talks about the personal health record and carrying it from place to place.
And then the fourth tool, or role, of a PHR which was emerging very clearly in your discussions is as a dissemination tool.
And you did a very nice job of describing what people have talked about in terms of standards and privacy, confidentiality and security concerns in these various roles. But in the last couple of months, I've come across – in part, this is with my work with the HL7, the HR committee – but I've come across two additional aspects that I think we need to start talking about.
And the first is the accuracy of the data that's contained in the personal health record. And people are questioning. We heard very early in NCVHS hearings from physicians who said they would accept a paper record from somebody but they would not accept it electronically because of its accuracy.
And this has actually continued. We've heard questions about accuracy of information and how do you judge that. And I think that's something we have to start discussing because if we're going to exchange this information, we have to have some definitions on accuracy.
And the second has to do with the timeliness and time sensitivity of the information. If we're talking about a long-term PHR or even a tethered PHR, is that information still current? Is it timely?
And I think we need to start discussions in that area, because unless we fulfill those two areas, people who are looking at a PHR at a point that's not today may not be able to understand the data that's in it.
So those are just really two comments; you can react if you'd like, but Simon, thank you.
DR. COHN: Do you have any comment.
MR. LANSKY: It's good – thank you.
DR. COHN: Okay. I'll just let everybody know what the order is – it's Gene and then Mary Jo and Mike; it's Maurice, Linda and then I think John Lumpkin has a question even though he hasn't spoken up on the phone. Is that okay? Have I missed anyone? Okay. Gene.
MR. STEUERLE: Let me add my compliments to those of others here. I think what you're doing has really been very, very helpful in coordination in the work among the agencies. It's actually crucial about what happens here.
I have one minor comment which is just going to reinforce something Jeff said, and then I want to get to a little more of a major issue.
The minor one is I would, if I were you – and maybe it's a comment to us in general, not just you – if I talk about something like the Federal role, I really would talk about really the public interest in this issue and how the Federal government can enhance it, rather than thinking about it as something inherent in the government itself. The government is basically an intermediary, presumably serving the public. That's fairly minor.
My major issue has to do with the question whether within the agencies themselves there is someone ultimately bears responsibility for making action happen. And I say this probably because I worked in government for 15 year; maybe it's my experience of working with IRS for many years.
But, you know, bureaucracies, I think, are notorious for committeeizing everything, and we are a committee here, because it in some ways gives nobody full responsibility for something happening.
We've attempted, the Secretary's attempted, to get around this a little bit with the appointment of David Brailer, but even he has really essentially no authority other than just if I can help for the most part other than to beg in most cases – there's some authority, but not a lot.
And so the question for me is whether within the agency there is some place at which the responsibility resides, not just responsibility for what you list under 1 – under your category 1 you have these issues of attention – but responsibility for the cost of inaction.
The problem that I've seen over the last couple years in examining this issue is this is an area where in part we're going to learn by doing, and by doing, we're going to make mistakes.
And so for bureaucracy, there is always the fear of making that mistake and getting labeled as a mistake, and so it's easy in a bureaucracy to defer and delay and put off to other people a decision.
And what you don't have in here, I think because it's presumed, is what the cost of inaction is. You know: What is the cost to me just of not having a personal health record, whatever form, where I could at least find out whether I'm getting duplicate shots, whatever very minor risk that may have, or whatever the cost to me is of not being able to check up on whether the doctor is checking my white blood cell count or whatever else, whatever problem I have?
It seems to me there are costs of inaction as well, and it's not clear from here, A, how that relates to the cost of things like if we violate privacy or something else, and then, B, who within each of these agencies has responsibility ultimately for making the decision not just to move, which could bear the cost of making the mistake, but the responsibility if there is not action, there's not movement, and whether inherent in the structure is someone actually in VA or any of these other agencies. It'd just be very interesting to know whether someone really bears – where that responsibility lies.
I don't fully know how to get at it; easier said than done. But I would love to at least have some comment within your report on how that responsibility plays out. Or in some other report, maybe.
MR. LANSKY: Well, I think it's something we should add to the report. We haven't formally discussed it, and I'm cataloguing in my own mind what I think the answer is to that question, and it's very diverse.
In fact, one of the interviews we did conduct, someone said so far this field is about personal leadership, not about structural authority.
And so in agencies where there's a person who has a strong feeling about how to make this happen, something might be happening, so that in the early phases, that ad hoc mechanism might be understandable but it might not address the other issues you raised.
DR. COHN: Thank you. Mary Jo?
MS. DEERING: Well, I'm going to be different and congratulate Cynthia, because I think we are deeply indebted to her for her vision in putting together this project and to see exactly what needed to be done, and I want to thank Penny for supporting it and put in a plug for old home, because ODPHP has been absolutely steadfast in its commitment to personal applications for health management and health improvement and this is just the latest in a series of really terrific contributions to I think the Federal government broadly and to the field.
Had a couple of quick comments and then a couple of requests to you both for the report in general and for the NCVHS workgroups.
In envisioning this tethered versus untethered, I want to just remind us all of the rising tide of what is called euphemistically "consumer-driven health care," which is just the cost shifting on to the consumer, and as one who in the recent open season jumped ship into one of these high-risk, high-deductible, consumer-driven health plans to try and test drive it for myself, and it doesn't have a PHR that goes along with it to help me manage it, I'm ticked!
[Laughter.]
MS. DEERING: A nice word to use.
And so you are going to have a rising audience of people who need something to actually manage this and who will need the functionality of information exchange and information management regardless of which Administration is in power.
Second, I wanted to mention that NCI is looking at a couple of areas where we would hope to get some interest in collaboration from others and they're both around the area of standards.
We are very interested in standardizing the patient interface both for data entry – not only data standards around patient-entered data but issues about accuracy that have been raised. We're actually doing some tests to judge the accuracy of patient-entered data by comparing it to some records.
But also we're interested in an areas that I know that Cynthia has always been interested in, which is not the data standards but the presentation standards.
And I know, David, that you were a strong voice in saying if the Federal government did nothing else but help lead us toward some kind of accepted approach to the interface and to understanding how real people, real patients, would really want to interact with it, that that would be a contribution. And NCI does want to support some research in that area.
I wanted to point out that the HL7 personal health record working group is finally going to get underway this month, and so there will be work begun to evolve in that field.
My requests to you are, first, with regard to this issue of privacy and public interest, Mark Rothstein, who chairs the Subcommittee on Privacy and Confidentiality, is holding some hearings to look exactly at these issues of privacy under the NHIN and with patient "control" of their record.
And so to the extent that you are – I don't see Kathleen Fyffe here who does triple duty and she staffs him on that – but to the extent that even in the next few days you could tease out some of the types of questions around patient control that you see emerging and feed them back to us, we'd be happy to share them with her because I know that they're soliciting questions as we talk for those hearings.
And then the last thing is a request for something that you might want to pay attention in your report and it does have to do with how much should the government be dictating this, that or the other. And it does seem to me as – you know, again, ODPHP was the very first to come out with a government Federal consumer health portal.
And now there's lots of them all over the place and they almost represent the same problem that they were created to solve. And I think that the same could happen with PHRs.
And so you could probably help by saying: Are there a few key strategic areas where, if nothing else, unified action is absolutely essential? Data standards – you know: What should the patient data entry be? I mean, I'm just hypothesizing. What should be the requirements for patient control?
If you could categorize even with whatever guard or specific nature you could indicate where you think at a minimum, if the government did nothing more, it not only should but absolutely must do that consistently.
And I guess I'm thinking more in terms of its own activities, like CMS doing a PHR, because I can actually, quite surprisingly, foresee the time when Federal agencies are going to be saying, hey, this is such a great thing; we want one, we want to offer it to our audiences, just like we now have a website.
And so I think if you could tell us what at a minimum we need to do, absolutely unified, would be helpful.
DR. COHN: Thank you. Mike Fitzmaurice?
DR. FITZMAURICE: David, I liked your model, the way you approached it. As you were going through it, I found myself thinking this could apply to all of HIT, this could apply to other areas than health information technology – the way you look for issues, the way you look among constituents, and the way you look for the role of the government. So I applaud the framework.
And I have just a couple of suggestions, or maybe comments.
One of them you talked about in one of the slides, providing integrating tools and functions. It would help us to know what are examples of these things that the private sector is not picking up that the government has as its duty or role to supply. A couple of examples would help there.
Secondly, what I find missing from the role of the government is the notion of research, evaluation, providing information for personal health record investors about the business case and the consumer case for adopting PHRs.
And then thirdly, I guess Cynthia covered this one; she said, well, this is not a do-everything study. I find myself wanting to know where is PHR activity taking place – VA, CMS, DOD? Where is the PHR used? Where is it being supported? Where is research and evaluation on PHR being done?
And then you'll probably make recommendations at the end of something like: Where should leadership reside in this area?
I'd like to see off site a list of criteria by which you go about making that recommendation, of being explicit about them – here's where it already is, so we think it ought to be expanded; here's where expertise is and we think you ought to get resources. How do you decide where leadership should reside?
Maybe, here's the top level, and it ought to be at the top level because coordination is necessary. Those are some examples.
Part of high-level leadership, and maybe one of the most important parts, is determining the amount of investment the Federal government is willing to make, it's investment of money, it's investment of time and people. Managers hate to send their staff to some meetings, to committees, to things where they don't see that it's going to please their boss, and the ultimate boss, of course, is the President and Congress and the people.
Jeff mentioned about the public being concerned about the Federal government glomming up patient care data, making a database of it, perhaps.
I see this PHR arena not as requiring more patient information in the hands of the government; the government already has information that might populate PHRs in part, with diagnoses, procedures, and over time, where has it been paid for over time? And many private health plans have that as well as DOD, VA and CMS.
I think most of us can support the patient getting access to this data to improve their health care, their health habits and treatment compliance. And so the government might be a pusher of data or at least a place where, when the patient is authenticated, can grab that data.
I see VA doing that in myhealthevet; I see CMS trying to do that by putting information on a website; I see Social Security doing that by getting access on the website. I see all that feeding into what I want in my home for my own personal use.
MR. LANSKY: Good. Thank you.
DR. COHN: Linda?
MS. FISCHETTI: Cynthia and David, thank you very much. I very much look forward to your report when it's completed and I think it will have great utilitarian value for us.
I do want to mention that if you are taking on the taxonomy issue, Jeff so eloquently sent us back to the historical benchmark from 1991 of IOM, that has been used repeatedly internationally and expanded upon, and ISO technical committee for health informatics 215 is publishing a scope and definition for electronic health record and electronic health record systems.
And it has a great deal of definitions that we here domestically are not yet using and it also has helped set the explicit expectation internationally of the differentiation of the various types of EHR and EHR systems.
So I would suggest that you look at that.
MR. LANSKY: Thank you.
DR. COHN: Great. Now, I think we're sort of finishing off the session. Now, John, I know that you're on the phone and I think you're raising your hand but we just can't see it very well. So I'm wondering if you have any comments or questions?
DR. LUMPKIN: No, actually no comments and questions, although I did try to raise a point earlier. There are a few of you who may be a little bit more distant from the microphone and it's a little bit hard to hear.
DR. COHN: Okay. Well, John, actually thank you for reminding us, and I guess I would once again remind everyone for the sake of those listening in on the Internet, and I think we only have to ourselves spend one session on the Internet to realize that you do need to get close to the microphone and speak and hopefully slowly so that those listening in can actually here. John, thank you for the reminder on that.
Now, we are running about 15 minutes late. We will take our break. Obviously, I want to thank our presenters for some very interesting testimony and information. We'll start again at about 10:45.
MS. DEERING: Could we check to see if our participants are on?
DR. COHN: Yes, I guess we should check. We have two –
MS. DEERING: George Brown.
DR. COHN: -- George Brown and Thomas Foley calling in. Are they on the line at this point?
Okay. Well, I'll ask during our break if we can just check and let them know that we're running just a couple of minutes late.
So anyway, we will take a 15-minute break. Thank you.
[Break begins at 10:30 a.m. Meeting resumes at 10:50 a.m.]
DR. COHN: Okay, we're going to get started momentarily if I could ask everyone to please be seated. And we obviously want to thank our presenters, George Brown and Thomas Foley, for waiting so patiently on the phone. Really, our apologies that we're running late.
MR. FOLEY (on phone): Not a problem.
MR. BROWN (on phone): Apology accepted. [Laughs.]
DR. COHN: Okay, thank you.
Okay, this is our next session. As those on the Internet realize, this is a meeting of the National Health Information Infrastructure Workgroup of the National Committee on Vital and Health Statistics. I'm Simon Cohn, the Chair.
We're obviously very thankful to have both George Brown and Thomas Foley on the phone to present some testimony and discussion I think of their use of personal health records, so we really want to thank you for joining us. I think we also have in attendance I believe it's Robert Blais –
MR. BLAIS: Yes.
DR. COHN: -- okay, as our third presenter this morning, so we want to thank all three of you for taking time to join us and sort of share some of your experiences with us.
Now, both George and Thomas, I do want to remind you that you are on the Internet and being broadcast, so just – this is not meant to in any way stifle conversation, but just to once again reinforce that this is being broadcast publicly and this will obviously be a public record.
With that, George, do you want to start out, or Mary Jo, did you want to give any introductions to all of this?
MS. DEERING: I was going to thank them both for joining us and let all of our participants know that Mr. Brown and Mr. Foley were identified by CapMed on one hand and by Geisinger on the other and we're very grateful to them for being willing as members of the general public to share their experience.
And I would perhaps just invite each of them to offer a word or two at the beginning of their remarks about how they came to use the particular system that they're using. And again, thank you both, gentlemen.
MR. FOLEY: Would you repeat that last sentence, please?
MS. DEERING: Well, I was encouraging you, if you wished, to open your remarks with a couple of sentences about how you first to use the system that you're using.
MR. FOLEY: Gotcha. Okay.
MR. BROWN: You want me to start, Mary Jo?
DR. COHN: Yes, and I just wanted to explain to you how this works since I'm sure you're not familiar with this group.
What we'll do is let each of you comment, and then at the end, what we'll do is to ask questions and have general conversation, assuming that's acceptable to everyone.
MR. BROWN: Okay, you want me to start, please?
MS. DEERING: Yes.
DR. COHN: Yes – George, thank you.
MR. BROWN: Yes.
AGENDA ITEM – Presentation (by phone) -- GEORGE BROWN
MR. BROWN: I have participated in CapMed since 1999 at which time I was seeking something that would combine my medical records and my wife's. We both have somewhat of medical problems, and it was getting monstrous to deal with. So, being more or less a novice on a computer, I searched the Internet till I found one that I thought might fit my needs.
Fortunately, at that time – they no longer have this, but at that time they had a 30-day trial. So I downloaded the program and tried it for 30 days to get familiar with it.
After getting into it, I could see that it was what I was searching for, so I set up a regular program with them, and it's been with a lot of medical help. I mean, you can tell that the program has been put together with somebody, some type of providers or medical personnel that knows a little bit of what they're talking about.
For example, if you wanted to record a new type of medical detail such as a treatment or a condition, they have a box that you click on, and then when you click for a new program to come up, it'll list various common conditions or tests and you can automatically put that into your file. You can date the file when you had this particular test or condition, which gives you an excellent way to review the history of it.
And then also, as insurance goes in this day and age, you know that most of the tests that you take annually have to come up on a year basis and you don't dare avoid that policy, so by being able to click back on, say, when my wife had the last mammogram, I know pretty much when to start trying to get her appointment for the next mammogram and not violate the insurance regulations on it.
One of the big things that I think CapMed has and maybe other type of programs have this is what they call their "emergency key." This is what's called a jump drive. It's about 128 mgs.
And now they have one that has the complete program of CapMed of what they call PHR, personal health record, built right into the key. That way you can take it from computer to computer and you could also take it into your doctor's office and plug it into any USB port and you can put through what they call the "emergency card" in there, plus any reports that you want the doctor to review.
Now, this course would be under the conditions that the doctor you're seeing had a computer right in the examining room. Some of them do, some of them don't.
A lot of times when I'm going to go to a doctor – say, I'm going to go to a doctor for my high blood pressure, I download a graph that shows the readings I've taken myself over the past 30 or 60 days, whatever the time factor may be. Also, I put in there my weight gain or loss – usually not loss, but hopeful now and then – and my pulse reading and so forth and so on.
I can also bring up a medical history that is pertinent as to – I'm a polio survivor. I got polio in 951 when I was serving in the United States Navy. I was planning on being a career man, but that was cut short. So I have some problems with that. My wife has some medical problems, like I said.
We're taking a lot of medications. You can review these things, know when the due dates are for them.
I don't know what else I can tell you. I mean –
The doctors and nurses seem to be very impressed when I bring these reports in. They want to make copies of them. I usually tell them just to take the copy and put it in my file because I can make another copy back through this computer back here.
I think it's an excellent program, but there's probably others out there just as well.
That pretty well cover it?
DR. COHN: George, thank you very much. I think our next testifier is Thomas Foley, and you're on the line?
MR. FOLEY: Okay.
DR. COHN: Okay.
AGENDA ITEM – Presentation (by phone) -- THOMAS FOLEY
MR. FOLEY: I guess I'm in a very, very different situation than George is in that I'm with Geisinger health maintenance organization, and they initiated to me by suggesting that they had this system called My Chart; would I be interested in trying it out? And that was about, oh, four or five years ago. And they gave me some codes or stuff to get in.
And since then, I have accessed it fairly regularly. I have my own password and ID.
What I find very useful is that it keeps me in touch with Geisinger, Geisinger health maintenance organization.
For example, appointments by them or requested by me are communicated through the system. They have a database. The only thing I can think of – I'm not computer
literate, futz around with it – but they have a database that I can go in and say, okay, you did all these tests on me; now what does this mean? And I could highlight that. And it'll come back and give me a whole summary of what a particular test looks for, what the parameters are, in a language that I can understand.
All my lab tests, recent lab tests, are there. I can take a series of lab tests – let's say – oh, I'd have to pull it up to look at it, but let's say I was looking at high blood pressure. I could bar graph that to see whether it went up or down, stayed the same throughout whatever period of time happens to be on. They have a system.
Now, some of the things that originated, I originated. I had a heart cath done with a Dr. Blankenship about I'm going to say three – that's no longer in there. I would like to have had that stay and be able to go back and look at those records because initially I started printing them out and then I said to myself, this is kind of dumb; it's in the system. So I stopped downloading anything and depended on the system to provide me with it.
I find that I can go in almost anytime and access any information, medical, whether it is pertinent to me or maybe something that has come in discussions with other folks, I get this medical directory and look it up.
What else can I tell you? That's a question I'm asking you.
MS. DEERING: This is Mary Jo. Thank you very much.
It occurred to me that maybe I would invite each of you to address – there's two separate areas, and you can do them both together or we can cover one first and then the other.
The first has to do with -- and it may only be for Mr. George Brown because you are entering your own information – there's sometimes some concern, I'm going to be very honest, about the accuracy of patient-entered data and that doctors are suspicious of it.
I'm wondering: Are you finding anything like that as you use your record, as you put information in? And as doctors look at your information, do any of them question you about this?
MR. BROWN: They haven't, up to this time.
MS. DEERING: And I guess the other side of it is: Is it hard for you to put the information in?
MR. BROWN: I can also put in attachments. I could scan in to a program. Say, my last blood work-up, and add that attachment to the system. I can also go on the Internet, like Tom was talking about, and get medical information as needed.
But no, Mary Jo, none of them has questioned my accuracy of stuff. I suppose if it was way out of base to what they've been seeing, they might, but, no, I haven't had that to come up.
MS. DEERING: Thank you.
MR. FOLEY: I'm in a very different system, listening to George. He's providing the information and I am receiving the information from Geisinger and it's my chart system.
There is something I would like to see in there that isn't, and that is when I'm in the doctor's office and we're going through all the information, he or she is typing into a computer and I can only assume what they are putting in there has to do with my visit and their assumption is to what it is all about.
I would like to see that in my chart so that I could go in there and access that and have it say something like "Patient," or whatever they call me, "No change; everything is fine." Or, "Collect his money before he leaves because he's checking out and doesn't know it."
[Laughter.]
MR. FOLEY: That would be helpful.
MR. BROWN: That was good, Tom.
MS. DEERING: Well, let's just stick with that just a minute. Are there other things perhaps, Mr. Brown, that you would like to see in your system that aren't there or things that either of you don't like about your systems?
MR. BROWN: Well, one thing I was going to point out. I think one of the reasons I've had the success with this CapMed program is the fact that they have a lady name of Beth Hunter who does the support. And as I mentioned to Tom, I have a condo in Indiana with a computer up there.
Well, needless to say, I want to transfer that information back and forth. And before they brought out this key, I would have trouble of transferring updated data from one computer to the other computer. Now with this key, it's all simple; I just plug in, that's all there is to it.
But one of the questions that you asked for me to answer in the future is: How can this be implemented to the masses? Well, one thing they need is a simple program and something that has good personal support, if that answers your question.
MS. DEERING: Thank you.
DR. COHN: Why don't we proceed on and ask Robert Blais to talk with us, please.
MR. BLAIS: I'm going to let Jimmy talk first.
DR. COHN: Oh – well, I think he's included; we were going to have questions afterwards. That was why I was asking Mary Jo whether we were continuing the questions. Maybe I'd better ask all three of them questions.
AGENDA ITEM: Presentation – JAMES MAGIERA
MR. MAGEIRA: Would you mind if I also spoke? I'm a veteran also, and I'd like to – with Bob?
I'd just like to tell you why I find myhealthevet so important is because I'm a Vietnam veteran, and I can remember back when I was standing on an aircraft carrier, and the next thing I knew, I was in the Portsmouth Naval Hospital. I woke up in an intensive care unit –
DR. COHN: Is it they can't hear or –
MS. DEERING: Do you his name for the record? Would you give me your name?
MR. MAGIERA: Oh, James Magiera.
DR. COHN: Okay – I'm sorry.
MR. MAGIERA: -- and I found myself in the Portsmouth Naval Hospital in an intensive care unit.
And when I awoke, there was a person standing next to me saying that everything was going to be all right and you had a sever concussion and I ended up spending nearly three months there, rehabilitation and taking a lot of tests and so on.
And the three months that I was there, I didn't learn much more than what I learned the first day – that I had a concussion, I was going to be all right. What I was hearing when I asked the doctors was a lot of languages I didn't understand. A lot of it was abbreviated. I didn't know what an EEG was or all these different terms. I had just turned 20 years old.
So what I did, like most of the veterans did there, as soon as you got out of the doctor's appointment, you'd run to the men's room. And you'd go in there and you'd carefully pull out the notes so that you wouldn't put them back wrong, and try to read what was written, because you always carried your folder with you.
So we were all in there, trying to find out what the problems we all have.
And of course I'd get out there and you'd be even more scared than when you went in. There's one saying this is going to happen to you, and the other says, oh, no, this is going to happen. So we were totally confused.
And with my myhealthevet, what I've found now is I can go in to my myhealthevet and I can look up these abbreviations and I know what an EKG is, I know what a spinal tap – I didn't know what it was, and I was getting one.
I was really, really scared in the hospital not knowing what was going to happen to me. But with myhealthevet, it's allowed me now to be able to go in and look up all these different terms. I mean, there's 11 million pages in the library alone. So I'm going to find it.
And if I need help, there are people are going to help me find the information that I need.
Myhealthevet also now is allowing veterans to be able to go and self-enter information. That's really good because you're going to be able to put information in from your private doctor, which I do have. I have a private doctor, and I didn't find out much more from my private doctor than I did from my military doctors.
It was still the same thing – it was terminology. I didn't know, I didn't understand. I would ask; they would give me the answer, but I felt so stupid saying, "I don't know what you're talking about."
But now I can take that information and I can come back and I can come back and I can look it up, so the next time I go to my appointment, I know a little bit more what I'm talking about.
And myhealthevet that I see at this point is such a great asset to all our veterans, even in Afghanistan and Iraq. I mean, if you have access to a computer, you can go to myhealthevet. You can record things that are happening to you there.
My father-in-law served two terms in Vietnam and he was being sprayed by Agent Orange. The only reason that he even got something at the end – he died at 50 years old – he was sending letters home saying that he was in the field, where he was in the field, and they were coming him, spraying these liquids over him.
He ended up coming up and had cancer which went all the way up through his spine and through his whole nervous system and he died 30 days later.
Maybe, you know, a veteran who can record these things that are happening now on a computer can bring this up once they're out of the service and say, you know, this is why I'm having problems with my skin; maybe he can look up Agent Orange is, or whatever the things that are out there, these chemicals that are on these bombs.
Who knows what's out there in that desert these veterans are holding, or breathing. But they can record that and then come back later and bring this up to their private doctor or a military doctor or to the VA.
It's a fantastic tool. And I don't know what took so long to get it here because I know veterans are looking for information. They want to be able to find out what's wrong with them and understand what's wrong with them. Just like private people do, they want to know. But they don't know how to ask. The veterans that I see every single day are veterans who are older veterans now that don't know how to use computers very well but there's classes that are coming up to teach them.
I have a veteran who told me, I wish myhealthevet Phase 2 was in about three months ago because he woke up in the middle of the night and he has his own computer in his room, and he said I was getting these sweats and hives and so on and by the next morning, it was gone. He said, if I at the time had my computer and I had a place to store it, I could have stored that in there because my appointment didn't come along until about a month later.
And so now he has a record of it and he says, oh, by the way – that's right; I do have something that happened to me one month ago. Whether it was important or not; maybe it was something he ate, maybe it was a little stroke, I don't know. But he could bring this up to his doctor.
What I'm going to do is once Phase 3 comes into effect is I'm going to take my medical records, and I want all my medical records, because when I go see my private doctor, I don't want 10 percent, I don't want 20 percent, I don't want 90 percent, I don't want 99 – I want 100 percent, because I want my private doctor to know exactly what's happened to me over these years and what's being done to me.
Also, the other way, I'm going to take everything that private doctor gives to me and I'm bringing it to my VA doctor and I'm going to let him see what's going on. I want the two of you to get together, find out what's happening to me is the right thing. That's all veterans want. They want to be cured. They want as much help as possible.
We fought for our country, we bled for our country; we want our country to respect us and to let them know that we care about ourself and we want this information.
And the one thing I can tell you about my myhealthevet up to this point is that it's absolutely straight from the heart. The people that are working on this program are fabulous people. They've done a lot of work, really, really hard work, and I can't thank them enough.
And I have a little bag over there – I wish I had brought it over here – but I've got 18,000 names in it that I could roll out here right now, signatures. It would go two times the length of a basketball court. I've left another 20,000 back that I couldn't take; I'd have to pay for another seat on the plane. They are all thanking you for all that you do. We want more.
We want more because we deserve more as veterans. We fought hard so that you people can try to do the best to help us and we understand that, but we want all our records, and that's a big issue. We want them all.
So I want to thank you for allowing me to come here and tell you a little bit about how I feel and veterans that I have spoken to feel about myhealthevet and personal health records and what it means to me, and to us.
Thank you.
MR. FOLEY: Mary Jo?
MS. DEERING: Yes?
MR. FOLEY: Tom Foley, here.
MS. DEERING: Yes.
MR. FOLEY: I made the assumption that my Geisinger, the information that's in the system itself, is available or provided or is in the record.
MS. DEERING: I'm sorry – was that a question or –
MR. FOLEY: It was a question. And I'm looking at my chart here which is health summary, medications, test results, health reminders, recent visits, immunizations, allergies, current health, you know, all of those kinds of things that are available to me.
MS. DEERING: Yes –
MR. FOLEY: That is part that is in the record already?
MS. DEERING: Yes. I mean, in some records, that is in. In other records, you have to create it yourself.
And are you asking whether myhealthevet includes all that?
MR. FOLEY: I guess. They are things that I did not mention on the assumption that it was part of the presentation there in Washington.
MS. DEERING: I'm not sure – you're free to mention whatever you'd like. But perhaps what I would do is we have one more person who is going to testify, Mr. Robert Blais from the VA. Could I ask you to hold that thought –
MR. FOLEY: Sure.
MS. DEERING: -- and perhaps we'll let Mr. Blais share his views, and then we can open it up again.
MR. FOLEY: Okay.
MS. DEERING: Thank you.
AGENDA ITEM – Presentation -- ROBERT BLAIS
MR. BLAIS: Yes, my name is Robert Blais. I use myhealthevet to record pretty much everything I do now. And you can check up all your medicines and see if you're taking eight medicines and you can check them to find out any reactions they have to each other and you can actually print it out after and bring it to your doctor.
And, oh, there's all kinds of really good tools in there for questions that you just don't know about yourself. It's just amazing how much information; it's hard to really comprehend all that they actually have, looking into the Web page.
I'm trying to think of what else I can do with that. There's an animation, animated part of it, so you can look any kind of parts of your body, the names of the parts of the body, the muscles and the nervous system. Pretty much what I do with it. And still it's never-ending learning because it's so huge.
MS. DEERING: Thank you.
DR. COHN: Okay. Does the panel have questions? I think, John Paul, I saw your hand up earlier. Do you want to start and then – oh –
MS. DEERING: Do you want me to read –
DR. COHN: Okay. I guess Mary Jo goes and then John Paul and then Jeff.
AGENDA ITEM: Presentation (by email) – BONNIE THOWSON
MS. DEERING: I'm actually now speaking on behalf of someone who couldn't be here when we trying to identify people who were using some different form of personal record.
I was also referred by David Lansky to a woman named Bonnie Thowson, who couldn't be here but who sent me a short email to explain how she had used a personal health record. So I'll read it verbatim; it's just a half a page. It says:
"Mary Jo, I am so sorry I missed you this weekend. I would happy to share my experience with you.
Since I have been and will be out of touch by phone, I thought I would share my experience of my Shared Care Plan with you in writing via email.
"I have two granddaughters who are 11 years old, and this summer we went on a cruise to Alaska, cruising being my favorite way to explore the world. Of course, the girls know of my diabetes and we had talked about the Shared Care Plan, where it was, and how it could be used.
"One of them had been with me once when I had a blood sugar drop suddenly, and so she knew from previous experience what to do in case I couldn't tell her."
"We were getting ready for breakfast one morning and I suddenly became aware that my hands were shaking and I began to feel ill, then dizzy, and couldn't focus. I told the girls I wasn't feeling well and to get help. That was the end of me.
"One granddaughter took the paper copy of the Shared Care Plan with her to the medical office on the ship while the other stayed with me. The medical team arrived a few minutes later and supplied the medical treatment I required. Everything worked out great.
"I know that the Shared Care Plan saved my life. All the information the medical team needed was on the plan – medical conditions, meds and dosages and allergies – all within their immediate reach.
"I am sure the outcome of that outing would have been different had I not had the Shared Care Plan with me. Needless to say, I'm also very proud of my granddaughters, who kept their heads in an emergency.
"Bonnie Thowson."
MR. BLAIS: Shows the importance of it!
Questions, Answers and Comments
DR. COHN: Okay, John Paul, do you have some questions?
MR. HOUSTON: Yes, I do. Not being a doctor, one of the things I always worry about myself, and I know when we talk about PHRs and other things, and I think it's specifically true where PHRs contain information from the medical record, and I guess I'm concerned about whether the patient understands the nature of the information that he or she is looking at.
And I know I guess Mr. Foley said that in the Geisinger My Chart portal he has the ability to look at his medical records information, and I guess the same holds true for myhealthevet.
I mean, my question is, is it something that you actively look at, your information, or you just like the fact that it's available for your other care givers and do you find yourself trying to understand it more or finding that you don't understand it as well as you might think then when you go talk to your physicians? I'm trying to understand perspective.
MR. MAGIERA: Oh, definitely, definitely. I interpret it one way and the doctor will interpret it a different way, and that's why you have to get together. That's why we need to get together, so that we both understand what we're talking about. Absolutely, absolutely. I'm not a doctor; I'm a horticulturist – I grow flowers, I work with plants. I don't know nothing about that.
MR. HOUSTON: Do you find yourself sort of spending a lot of time researching, trying to understand what it is –
MR. MAGIERA: Yes, I do. I do go in, and I'll go in the computer a lot. And the other thing that's great about myhealthevet is the information you're getting on myhealthevet has been looked at, someone has checked it out, so it's going to be pretty accurate.
The stuff that's out there on the Internet, I don't know if it's true, I don't know – I could be writing that. Anybody could be writing something, you know? I don't know.
But I know in myhealthevet I can trust it.
MR. HOUSTON: Do you fear that other veterans may misinterpret or look at their information in myhealthevet and may not make the right decisions or misunderstand what it really means?
MS. FISCHETTI: Basically, would it be scary to see the information and not have the context? Is that –
MR. HOUSTON: Right, exactly, or misunderstand the context and misinterpret the information?
MR. MAGIERA: Myhealthevet isn't in the third phase yet which is going to allow us to go into read our medical records, so it's not there yet. But I think I can answer that a little bit.
It's true – I might be a little scared to see what it actually really means. But I've been in war; I'm not that scared to see information. I had bullets shot at me, I got hit in the head with a wheel, you know? Yes, it's a little unnerving to know that maybe something you have, you're going to die from it in five, 10 years. My condition, I may be blind in another six years, not totally blind, but legally blind, because of what happened to me.
Sure, that's frightening, that's scary. I don't know what I'm going to do, but I know after talking to doctors and going on different places on the Internet and reading about it, I feel a little bit better. I don't know how true all that is, but I know when I go into myhealthevet and I read it, I feel a little more comfortable because I know it's been looked at and, you know, I live with it – you have to.
MR. HOUSTON: Mr. Foley, just briefly, do you find the information –
MR. BROWN: I've got a question that I'd like to ask somebody.
MR. HOUSTON: But I'll ask Mr. Foley the question first. Do you find the information is understandable in the Geisinger my health, my chart system.
MR. FOLEY: Yes, I do. I find it very useful. While we were talking here, I just pulled up my triglycerides.
MR. BROWN: That's something called cholesterol.
MR. FOLEY: I've had a family history of health problems. I had my heart attack at age 39 and so I do tend to try to take care of myself. And my cholesterol has been in the 238 range for years and years and years, and Geisinger has put me on a cholesterol reducing drug and I'm now down around 170.
So I think being able to look at those kinds of things gives me some encouragement – like, hey – you know; I'm pushing 70 right now and I'm doing pretty good.
DR. COHN: George, are you there?
MR. BROWN: Yes.
DR. COHN: I guess we should ask the same question of you as well as it sounded like you had a question also.
MR. BROWN: Yes, I've got a question. When Mary Jo and I were talking earlier, the past couple weeks ago, she mentioned the fact that you had some ties with the VA, this group has ties to the VA's ear?
The reason I bring that up – I'm a service-connected disability, been going to the VA since I got out of the service in 1952, and this is the first time that I've heard about this myhealthevet. While you folks were talking about it, I went on the Internet and put it in my "Favorites" so I can go back and review it a little more.
MR. MAGIERA: Good for you.
MR. BROWN: But I think it might behoove the VA to increase this information to the veterans that this is out there so they can take use of it.
MS. DEERING: In our third session today, we will have Jimmy coming back and speaking about what he's done locally to reach out to the veteran population, and I don't know if that will be the same type of activity that took place in your environment, but Jimmy can certainly take your contact information and be in touch with you directly.
DR. COHN: And, George, that was actually a person representing the Veterans Administration who is part of our staff on the Workgroup, so I think she heard you. Thank you.
MR. BROWN: Just a suggestion, don't need to say ashamed of myself, but I didn't know this was available because I've relied on the VA for many things – I've got a scooter from them, I got a grant for a disabled home, and I thought I was pretty much up on it, but I find out now that I wasn't.
MS. DEERING: You know this actually – this is Mary Jo – and this suggests a real challenge. George, you have been a CapMed user for so long, you've got your USB, you've got all your information. You don't yet have myhealthevet. The question to VA is: Can you take his USB and dump his information that he's collected over all these 10 years and put it into myhealthevet for him?
MR. BROWN: Well, that's a good question, and I think they would be able to because all they'd have to do is take my health key, the jump drive I was talking about, plug it into their system, and they could dump it in for at least the stuff I want them to put in.
MS. DEERING: We'll have you come back in a year from now and talk with Jimmy and everybody and we'll hear the story of how it happened, okay?
MR. BROWN: Okay, fine.
DR. COHN: Jeff, I think you're the next question, and then Gene.
MR. BLAIR: It is a pleasure to hear positive stories about how something like personal health records could be helpful, not only positive stories but even enthusiasm about that. But that's not where my question's going to lie.
My question is going to try to find out from all of you who have benefited from personal health records and are in many cases even enthusiastic about personal health records if you have tried to share this benefit with either your friends or your relatives and if you've had experience where they either are not able to make use of it or don't want to make use of it or object to making use of it.
What have you run into in terms of barriers of others, friends or relatives, to getting the same benefit from the personal health records that you've been enjoying?
MR. MAGIERA: I can kind of answer that. I think that one of the big problems I find is that there are a lot of veterans who still don't know how to use computers properly yet. And I think once you can teach veterans how to get on to myhealthevet and how to use it properly, I think that barrier is broken. Then you will find the benefits.
If you don't know how to use something, and you can have a beautiful Corvette, but if you're not a real good driver and you don't know how to use the power, you might as well get a Volkswagen. This is the same thing.
Once you get in there and you learn what you can do with the power that you have there, you'll go back again. I guarantee you will. It's an educational problem.
MR. BROWN: This is George Brown. My experience with trying to share this, my CapMed, with friends and family has been both positive and negative, and I think I'd have to draw the line as to the age group that is positive or negative.
Somebody in my age group, in the 70s or so, that has health problems, they're very enthusiastic about learning something like this and setting something up. I run across an individual in my family or a friend that's in the 40s or 50s, they don't seem to be too interested because they don't have the health problems, they're not taking the medications, they're not going to the doctor as much as us older folks are, and it's just something they're going to worry about in a later stage in their life.
MR. FOLEY: Tom Foley here. I'm probably the only one, my wife and I, with Geisinger HMO. The rest of my family are in other areas of the country and I don't know if they have that available.
MS. DEERING: This is Mary Jo. I only wanted to add a little marketing pitch in that there are other plans and providers that have these, so you could tell them how wonderful yours in and then you could tell them to go to their doctors and ask for one.
MR. FOLEY: Yes, and I might also add that I had a urologist and an ophthalmologist that I was using that are not part of Geisinger – that is, they could not input their information in the Geisinger system. So I have opted to going, or ask to be put in, with doctors who have access to my chart for my urology and my ophthalmologist and all those tests and stuff will now become part of the record for me to access.
MR. MAGIERA: May I say something about younger veterans maybe not using it as much also? For one thing, again, they don't know about the program yet. But there's a lot of stuff in there for young veterans. There's health, there's exercise programs, weight-lifting programs, there's all kinds – there's more than just medical information per se. You know, I have that broken out.
I mean, you can go in there and it'll tell you how to have a 101 diet management program, how to exercise properly, how to ride a bicycle properly, how many miles you should go to lose a few pounds or whatever it's going to take.
There's a lot more to myhealthevet even for young people, but then again, what it is, the young veteran has to know about the program. And once they do find out about it, they'll go to it to find these things that are in their age group. That's what's good about myhealthevet. It's just not about older veterans. It's about young veterans. It's about the veterans who's coming out right now, and the veterans who are coming out right now are young and they know how to use computers – they all use computers.
And when they find out about myhealthevet, I'll guarantee you they're going to go on it, because I'm experiencing it right now. I'm doing classes on weight-lifting with young veterans who come into the VA and the first place I send them is myhealthevet and say, go look up some of the myhealthevet tools in there about weight-lifting and how to take care of your body properly.
So there is things here. They just need to know.
DR. COHN: Okay. And Gene, I'll let you ask a question – you're next.
I just have a question, Jim, only because we didn't really have a formal introduction of you now. Are you actually employed by the VA or –
MR. MAGIERA: Yes, I am.
MR. BLAIS: I am also.
DR. COHN: Okay. In terms of your positive statement, I just wanted to make sure that we had full disclosure on that, okay. I mean, thank you – I just wanted to clarify that. Gene?
MR. STEUERLE: I wonder if any of our speakers have run into any obstacles on the part of providers who feel that since they're coming in with information or demanding information – I'm not just talking about what you would do on line – that you're adding to the time demands on the providers and so they react negatively.
And only by way of anecdote, I remember one time recently when I was forced to use a formulary and I called the doctor. He was very upset because he had to go through all this stuff just to switch my prescription. Well, if you think about it, it's not worked into his time schedule. He had to figure out whether he could charge or not charge for it.
And if there are additional time demands on this system, it has to come from somewhere, and often in some ways they're not chargeable. If you go into a doctor and have a lot of information and want to talk about and he schedules you for eight minutes or whatever it is, he's got to figure out how to make that up somewhere else.
So I'm just curious whether there's been that type of reaction. And it's also related, I think, to the Veterans Administration a little bit, because my sense is a lot of services in the Veterans Administration in truth are queued – that is, you know, there's a fixed budget, and so the way the Veterans Administration solves some of its problems – this is common in social policy – is they set up queues or lines and some people get in and some people don't and whether they're getting it because you triage it or it's first come/first serve or whatever else. So the more time demands on the system with a fixed amount of resources where you can't charge it, the more it could push against something else.
So I'm curious whether that means there has been some sort of reverse reaction. Or, could I have it totally upside down? People are glad you're coming with the information because it makes their life simpler and they can act more quickly and efficiently. Any of the four of you – not necessarily all of you – but I'd like a comment.
DR. COHN: George and Tom, did you hear the question?
MR. BROWN: Yes, I can answer it two different ways.
First of all, I find when I go to the VA that they are very receptive to information on my polio syndrome because it is a disease that's in past history and a lot of doctors don't know anything about it.
I also belong to a post-polio support group down here and we have a lot of literature, medical literature, for doctors we go see. Now, when we take that in, there seems to be – I wouldn't want to use the word "resentment," but it seems like we might be infringing upon their medical knowledge. And they're not too receptive to that.
This is a unique situation, though, when I'm speaking about the post-polio syndrome.
But when you go in with other medical information or questions of diseases or conditions they know something about, they seem to be very receptive. But when you go in with something that has a gray area of information to them, they kind of give me the impression that "what are you doing coming in here and telling me what to do?" You know?
So we kind of have a tendency to tread lightly on that.
MR. FOLEY: Tom Foley here. My experience is to receive information. I have never found it necessary going to a doctor's office other than with a list of questions.
DR. COHN: Robert, do you have a comment on that?
MR. BLAIS: The easiest way to comment sometimes is if you want to take the whole records with you, you can just – like a doctor has a computer, you can just type in myhealthevet and just show him all your records instead of – I don't think you can do it on a Pen Drive yet. You can just type it in and just show them everything you got right there; all of it's all manually input.
I think later on they're going to incorporate it so that it's going to start showing the records that the doctor's put in from the personal records now to myhealthevet web page.
DR. COHN: Okay. Cynthia, I think you're up next for a question or comments.
MS. BAUR: Well, I just wanted to thank all the speakers because I think they've done a great job of illustrating some of the issues we've been thinking about for a long time and the connection – to go back to the discussion this morning – the way that some of the policy goals and the strategic interests that sometimes don't get connected do get connected in very interesting ways.
And we actually already happen to have, interestingly enough, three national health objectives on some of the issues raised right here.
One, I think, on this question of access. So often we think about access to the computer technology itself, but what I heard very clearly from the speakers today was access to information being so powerful to them. And I didn't hear anybody saying 11 million pages overwhelms me. What I heard was 11 million pages is really interesting to m