[This transcript is Unedited]
Hubert H. Humphrey Building
Room 725A
200 Independence Avenue, S.W.
Washington, DC 20201
Agenda Item: Welcome, Introduction and Recap of NHII Workgroup Work Plans
DR. LUMPKIN: - raise their voice when they introduce themselves as we go around the room. Let’s go around the room. We are going to do introductions. I’ll talk a little bit about the agenda, what we are trying to accomplish today, and then we’ll get going.
So let’s start off with Marjorie.
DR. GREENBERG: I”m Marjorie Greenberg from the National Center for Health Statistics, CDC, and the Executive Secretary to the committee.
DR. HARDING: Richard Harding, member of the committee, and at the University of South Carolina, School of Medicine.
DR. STEUERLE: I’m Gene Steuerle, member of the committee and from the Urban Institute.
MR. HOGAN: I’m Bob Hogan, on loan from Kaiser Permanente, working with NHII.
MS. FYFFE: Kathleen Fyffe. I work for the U.S. Department of Health and Human Services, and I am staff to the NHII Workgroup of committee.
MS. BEBEE: Suzie B. Bebee, working on NHII.
MS. WITHIN: Olga Within(?), ASPI(?), working on NHII.
MR. YASNOFF: Will Yasnoff, NHII.
MR. BUTELL: Ted Butell(?), NIH, MCI.
DR. STEINDEL: Steve Steindel, CDC, staff to the workgroup and liaison to the full committee.
DR. HUFF: Stan Huff with Intermountain Healthcare and the University of Utah in Salt Lake City, and member of the committee and the subcommittee.
MS. DEERING: Mary Jo Deering, Office of Disease Prevention, Health Promotion and lead staff to the workgroup.
DR. LUMPKIN: John Lumpkin, and I’m Chair of the committee and from the Robert Wood Johnson Foundation.
Kelly Cronin just arrived from CAHIT.
MS. JACKSON: Debbie Jackson, NCVHS staff.
MS. BICKFORD: Carol Bickford, American Nurses Association.
(Several off-mike speakers identify themselves).
DR. LUMPKIN: Okay. We have three major things that we are going to cover today.
The first, we are going to do some updates from the department on the conference plans. We are going to - have four things actually - an update on the Connecting for Health Initiative. Carol Diamond should be arriving some time this morning to update on some of their recent activities. Kelly will do an update on CAHIT, the Council for Application Health Information Technology. Then, we are going to have some discussion following that.
What I would like to attempt between now and when we adjourn - and I am going to be shooting for a two o’clock adjournment, because there is a CAHIT meeting at two o’clock - and that is that there are two issues that I think are going to be important for us to discuss to begin getting our work done on our time line, other than those activities around the conference and keeping up to date some important developments.
Those two issues are to try to define the new dimensions that we discussed when we started mapping out our concept, and second is to look at the areas of overlap that we would like to focus in on between the current dimensions and any new dimensions that we may want to define, and that will then set some tasks that we may want to then do in order to follow through on those areas of work to flesh out those pieces of our new recommendations. That’s agreeable?
Okay. Let’s start off with Bill.
Agenda Item: Update on NHII Conference Plans
MR. YASNOFF: Thank you, and good morning.
Can the folks on the phone hear me?
MR. BLAIR: Yes, we - at least I can.
Simon?
DR. COHN: I’m fine. Is anybody else on the phone?
MR. BLAIR: Jorge, is, I think, also on the phone.
DR. LUMPKIN: And the rest of us, so to speak. (Laughter).
MR. YASNOFF: Okay. Well, I am going to go ahead. In keeping with your plans, I’m going to try to be very brief.
Just as a reminder, we have our six-point strategic plan - inform, collaborate, convene, standardize, demonstrate and evaluate - under which all our activities fall.
Under inform, collaborate and convene, we are making presentations at multiple places. We are doing ongoing educational seminars. We had a very interesting one yesterday where we discovered a number of new local health information infrastructure efforts that we were not aware of previously being done in the private sector, so those are very helpful.
We had a meeting with stakeholders on March 29th to talk about the requirements of NHII, and I’m sorry I don’t have a detailed summary for you, but we promised the participants that we would let them review the results of the meeting before we distributed it, but I think it was a productive meeting, in terms of thinking about things that NHII must be able to accomplish before we can say that it is completed.
Also, as I have mentioned here before, I think it is very important to have a good set of requirements that everyone agrees on before we engage in detailed discussions about architecture, because, clearly, the measure of any architecture is whether it can meet those requirements. So at the next meeting, assuming the next meeting is not - the next meeting of this group - assuming it is not going to be in the next few days, we will have some preliminary information on the requirements, and we’ll be asking the workgroup to comment on those, add to them, et cetera, and we intend to circulate those widely for comment.
We have been collaborating with a number of outside organizations, including Connecting for Health - and I’ll let Carol Diamond talk about that - and, of course, we are planning for the NHII 04(?) meeting, and I’ll spend a few minutes on that.
We do have our website, which I can show you, which is ready, and this is - this is not a live shot of the website, but it is a reproduction of what is live.
The eight topic areas we are going to be considering at this year’s meeting are personal health; governance; incentives; number four is standards and architecture; five is confidentiality; six, measuring progress; seven, population health; and eight, clinical research.
And, in addition, we are going to - as I believe I mentioned last time - have a tutorial evening before the meeting, so that new attendees can get up to speed on what NHII is.
In addition, we are going to have sessions for specific stakeholder groups. We have defined 10 groups of stakeholders, and for those on the phone, those are consumers, healthcare providers, healthcare organizations, employers, public health, payers, system developers, researchers, long-term care and health plans.
SPEAKER: These are in your handouts, too -
MR. YASNOFF: Yes, you have handouts of all this.
DR. LUMPKIN: Now, is this on the website?
MR. YASNOFF: This is all on the website. These are just copied right from the website.
DR. LUMPKIN: Okay.
MR. YASNOFF: And I’m not going to go through this in detail, but I did want to point to one thing that was changed, based on the feedback from the workgroup from last time.
There was some concern expressed last time. As you recall, we are going to have breakout groups by topic, but we also put in one breakout group by stakeholder, and there was some concern expressed at the last meeting that one breakout group by stakeholder was not sufficient, and what we did is - since that breakout group with the stakeholders is adjacent to a lunch period, we changed the lunch to a box lunch and basically extended the stakeholder discussions to a longer period of time. So the stakeholders’ discussions actually are almost three hours. We have almost three hours devoted to that. We are not going to have any kind of a speaker at that lunch, and everyone will stay in their breakout rooms.
As you can appreciate, one of the reasons we wanted to do it that way has to do with the logistics of reconfiguring the space for the stakeholders versus the topics, but we were trying to be sensitive to the feedback and have reconfigured it in that way. So be interested in your comments on that.
Again, I won’t go through all of this, but I do want to highlight our endorsers were having a great deal of success in getting endorsements from various organizations, and I’ll just flip through them on the screen. I believe we have over 40 endorsing organizations at the moment, and we are still contacting people. So there’s a great deal of interest in this, substantially more interest than last year, and so we are very excited about that.
So I will - let me move on.
So in our other strategic area - standardize, demonstrate and evaluate - we are working with HL7. As I suspect most of you know, there is a set of functional standards for the electronic health record, which is currently in ballot. That ballot closes in a few days, and we hope that it will be successful. We expect that it will be, and we are in the process of tasking HL7 to develop an EHR interchange standard that will allow the easy transmission of electronic health records in total from one place to another in standardized form, essentially enabling the transaction, Send me Mary Jones’ entire record.
In this work we are coordinating very closely with the VA. They are very interested in working with us on this, and anticipate using this standard to connect with local health information infrastructures all over the country, and this is very helpful in their efforts to integrate their information, not only within the VA, but information outside the VA about their patients who are treated elsewhere.
Interestingly, according to their data, 40 percent of the folks who seek treatment from VA facilities also are being treated elsewhere. So there is a significant issue in terms of information from the VA being available to outside providers, as well as the information from outside providers being available when folks come to the VA for treatment.
On April 13th, the full details of a solicitation for state demonstration projects of health information infrastructures will be announced by AHRQ. This is public information already. There has been a preliminary announcement made.
The intent is to receive applications from state governments or their duly-appointed agents for the development of statewide infrastructures, infrastructures within the state, perhaps - in the case of smaller states - regional infrastructures that involve multiple states, and the details - in terms of receipt dates for applications, evaluation and so on - will be released on April 13th.
We are also working hard to try to do something in our backyard, so to speak, in terms of bringing together the stakeholders in the National Capital Area and trying to create a local health information infrastructure here, and we are going to have our first large stakeholder meeting on April 26th - folks from Virginia and Baltimore and DC - to talk about how we might organize such an effort.
We believe that, in addition to the obvious advantages of having a local health information infrastructure of where we live, so that we are less likely to be the victims of medical errors and so on ourselves, we also feel it is important to be able to show to senior policymakers who are obviously in this area how this type of improved information flow can impact the quality of care that they and their families receive.
We are also working on evaluating financial and other potential incentives for accelerating NHII. For those of you who were not at the Connecting for Health meeting - and I hope I am not taking anything away from what Carol is going to say - Mark McLellan(?) was at that meeting, and, as you know, he is now the Administrator of CMS, and he made it clear that he wants to do everything possible to - from his point of view - to accelerate the adoption of electronic health records and promote the development of the NHII.
So I’ll stop there and we should have plenty of time for questions.
Thank you.
DR. LUMPKIN: Okay. Questions on the phone?
Okay. Steve.
DR. STEINDEL: I have a comment and a very quick business question.
I am very pleased to see the merging of the box lunch and the stakeholder session. I didn’t understand that when I saw the agenda. I think that is a very good move, very good idea. Thank you.
MR. YASNOFF: If you have any suggestions for how we could make that clearer - indicate it more clearly on the agenda -
DR. STEINDEL: I think - I’ll think about that.
MR. YASNOFF: Thank you.
DR. STEINDEL: Thank you, Bill. I thought you were going to ask do I have any suggestions what to serve for lunch. (Laughter).
MR. YASNOFF: Well, we would be happy to hear - (laughter) - but we will take those under advisement.
DR. STEINDEL: Yes, my business question: Last year, the members and staff to this workgroup attended the NHII meeting had no registration fee. Will that continue this year?
MR. YASNOFF: That is not up to me.
DR. STEINDEL: Okay.
MR. YASNOFF: And, essentially, just to make the situation clear, the way the financing for the meeting is working is basically the department is paying the entire cost of the meeting, except for meals, and so the registration fee basically covers meals. So whether the members of the committee are subsidized -
DR. GREENBERG: We actually paid the registration fee for all the committee members last year.
MR. YASNOFF: Yes, but those are from funds that are - those are committee funds.
DR. GREENBERG: No, that’s what I mean. The NCVHS budget -
MR. YASNOFF: Right.
DR. GREENBERG: - paid for committee members, and I think government and staff paid their own -
MR. YASNOFF: Right. I certainly would not object to that and would recommend it, but those funds are not under my control.
DR. GREENBERG: I think when I inquired, I got the explanation that you did, and then I think we have to actually deduct the per diem appropriately, because of the meals, but we will pay for the - the NCVHS budget will cover the -
MR. YASNOFF: And it’s certainly -
DR. GREENBERG: - registration.
MR. YASNOFF: - would be completely appropriate to also pay for travel and hotel and so on.
DR. GREENBERG: Well, we will do that as well.
DR. STEINDEL: Just one more comment, John. This is to the workgroup. We announced - at the last meeting, there was some discussion on the HIMS(?) NHII survey, that it was coming out. It is now out. It is on the HIMS website, and if anybody is interested in participating in the survey, they can go to the HIMS website and there is a link off the first page to do that.
As the coordinator for that, I encourage our participation, so we can help skew the results. I mean, so we can get some good results. (Laughter).
MR. HOUSTON: Back to that last point you made about coverage of NCVHS, there are two sessions at the end related to NCVHS. So I can’t imagine not being able - I mean - support that, because, frankly -
MR. YASNOFF: Right. There is no tuition fee associated -
MR. HOUSTON: I understand that, but - travel - well, these two things - workgroups or NHII workgroups -
DR. GREENBERG: Right. And those are completely open to the public. There is no registration fee -
MR. HOUSTON: But the point in terms of the staff is is that if the staff is going to get there to support that, so, in terms of travel, that would have to be covered -
DR. GREENBERG: Be like any member meeting.
MR. YASNOFF: But the committee members would not have to register for the meeting to attend those hearings, because those are - well, first of all, we wouldn’t charge the committee members to attend their own hearing – (laughter).
DR. GREENBERG: We appreciate that.
MR. YASNOFF: After long and hard consideration, we made that decision - (laughter) - but -
SPEAKER: Charge us double.
MR. YASNOFF: - but those sessions are open to the public at no charge. So what we are talking about is -
MR. HOUSTON: The registration.
MR. YASNOFF: - registering for the rest -
MR. HOUSTON: But I believe Steve had also talked about travel, also. That’s the reason I just brought that up that it would seem counterintuitive not to cover travel.
DR. GREENBERG: Who? Whose travel -
MR. HOUSTON: Committee members -
DR. GREENBERG: Of course.
MR. HOUSTON: - or staff members.
DR. GREENBERG: But we don’t cover the staff members’ travel. Their own agencies cover that.
DR. LUMPKIN: Just one other thing on logistics, we probably should open up that session to other members of the committee, and if they are going to be there, we may want to think about the layout -
DR. GREENBERG: Oh, no. Don’t go there. (Laughter). Excuse me.
DR. LUMPKIN: Yes, ma’am. (Laughter).
DR. GREENBERG: Jackie has been working very closely with Bill’s staff on the layout. It is fairly complicated.
DR. LUMPKIN: Okay. Okay. Never mind then.
DR. GREENBERG: So I’d rather not open that up.
SPEAKER: I didn’t hear a thing.
DR. STEUERLE: Can I just ask, do we have any formal role at all on Wednesday or Thursday or we just - we go to what sessions we want to go to?
DR. GREENBERG: Exactly. Unless you are asked by Bill’s staff to serve as an expert. I know last time some NCVHS members did.
DR. STEUERLE: I have something else major going on those days. I was just curious what sessions I really need definitely to be there for.
DR. GREENBERG: I would say it is your call.
DR. STEUERLE: Okay. Okay.
MS. DEERING: But it does occur to me it would be good to ask people which sessions they do plan to attend, if they do, because we know that our agenda, as a workgroup, is fairly broad, and so it would be interesting to see if there are any gaps in attendance at any of these sessions. So while we don’t necessarily need to steer anybody toward them, it would be good to know if we are covering all the sessions.
MS. RYPEN: When you register, please note which one, because you are going to be grouped according to which one you put in, and that is important for us when we do the breakouts.
MR. YASNOFF: And, again, as we did last year, assuming even distribution of the attendees across the topic breakouts, there will be two simultaneous topic breakouts for each topic. So, actually, there are 16 sessions, and so looking at the number of workgroup members, it doesn’t seem possible to me that every one of those 16 sessions could be covered by someone in a workgroup.
DR. LUMPKIN: Other general questions?
DR. STEUERLE(?): So, Jack, you’ll be -
DR. LUMPKIN: Yes, well, I think what we’ll do is - we are still talking about a conference that is very short, for those who are doing the planning work, but for those who are not day-to-day involved with the planning work, still is a ways off. So I think what we’ll do is, closer to the date, we’ll do a survey of where members and staff intend to go, and then look and see if there’s any significant gaps.
Like you, I have a meeting of our board of directors which I kind of have to be at, so I won’t be there for the last day.
MR. HOUSTON: Along those lines, I noticed you have a lot of TBAs for topic experts and reporters, and, actually, topic leaders also. How are you making the determination who is going to be a topic leader and a topic expert with regards to these specific -
MR. YASNOFF: We, typically, are trying to - I mean, it’s within our staff, and if you have recommendations, we would be happy to hear them.
The criteria are, in general, just as last year, we know who the experts are. We are not engaging government folks for those roles. So the government folks are not being asked to take on any of those roles.
When we find the topic leaders, we really are primarily asking them to identify the other people for us, but we work with them on that.
Frankly, it also revolves around people’s willingness to spend the time doing the work. So the people who - in some cases, the people who have the most expertise also have the least time and so are really unable to make those kinds of commitments.
So if you have any suggestions in that regard - specific suggestions about people we ought to approach or process suggestions about how those people should be identified, those would be welcome.
We are working as hard as we can to get all those people nailed down as quickly as possible.
We do, however, this year - last year, we asked the folks who were in the lead to actually do facilitation at the meeting. This year, we are not asking that, and we really want the lead folks to essentially cull material for background information for attendees, so that we don’t start the discussions of the topics with a blank slate, because, obviously, all those topics have been extensively discussed before.
MR. HOUSTON: And is it going to be a pickup - is a lot of that discussion going to pick up from last year’s -
MR. YASNOFF: Yes.
MR. HOUSTON: So there is going to be sort of the background from the prior year’s -
MR. YASNOFF: Yes, the recommendations from last year are the starting point for all the discussion of this year. There will, of course, be some - since the topic areas are not identical, there will be some judgments made as to which recommendations apply to which topics.
MR. HOUSTON: And sort of a followup point to that, near and dear to my heart are both privacy, confidentiality, as well as security, and I am wondering where - is security an architectural issue at this point or is it to fall under confidentiality at this point?
MR. YASNOFF: Security is primarily an architectural issue, and, in general, I think my view of security is that it represents the mechanisms by which you implement the privacy and confidentiality policies that you decide that you want to have, and in the meetings that I have had previously where we have had security as a topic, it has been concluded, on multiple occasions, that the security needs - the actual computer security requirements for healthcare information are - now, this is the security requirements - are no different from those in any other area and can be satisfied by industry standard security techniques.
The real issue seems to be in the area of privacy and confidentiality - in other words, what policies need to be set. Once those policies are set, you have to make sure that you have an architecture that allows for security implementation and that you have a security regimen that provides the appropriate level of protection that is consistent with your policies.
So I guess long and short of it is I don’t think a specific discussion of security in the context of health is particularly productive, but if you are volunteering to work on the confidentiality area, we would welcome additional assistance.
MR. HOUSTON: I would be happy to - my benefit.
MR. YASNOFF: We will make a note of that.
MR. HOUSTON: And am I allowed to ask one other - I had one other question -
DR. LUMPKIN: Is this going to be a lawyer question or a regular question? (Laughter).
MR. HOUSTON: Yes, it is. It’s an attorney question.
DR. GREENBERG: I gotta sit between the lawyer and the doctor here.
DR. LUMPKIN: Go ahead.
MR. HOUSTON: And that actually is a good lead in.
There were some regulatory issues that came out of the last year’s session, and I do know that some of the guidance that just came out in the Federal Register -
MR. YASNOFF: Yes.
MR. HOUSTON: - helps improve the climate with regards to developing -
MR. YASNOFF: Yes.
MR. HOUSTON: – NHII. Is that going to be consumed under a confidentiality also or should - I want to make sure that - because that came as a big recommendation a lot of groups that there were regulatory issues that needed to be addressed -
MR. YASNOFF: Yes.
MR. HOUSTON: - and I am wondering how that is going to be handled in the framework of this.
MR. YASNOFF: I think the issue there - that is a good question.
First of all, let me highlight what has been done, and I apologize for not doing that in my presentation, because I do think this is a major positive development.
There has been established now a safe harbor under the Stark Rules for investment in information technology that is in general in the community, and this issue has been brought up again and again, the problems that Stark creates for these kinds of investments, which are - in our view, as long as there is no quid quo pro and they are relatively disinterested, these are legitimate investments that should be no reason to preclude those, and so that has now been changed, and I think that is a major positive step.
So I’m very happy that we were able to get that -
MR. HOUSTON: Yes, I read the regs, and I’m very happy, too. I think - frankly, I don’t know if it is in the purview of NHII to maybe - I know there is a comment period here. Maybe it’s passed by the time we get to this, but I think there’s a little - I wish it was even a little bit better, personally, but maybe I am asking too much.
MR. YASNOFF: Well, it is certainly not for us to comment, but if other people wish to comment, that would be wonderful.
There was a strong recommendation from last year’s meeting that the regulatory barriers needed to be examined and removed, and, as this action shows, we have taken that recommendation seriously and have been working hard on it.
As you know, we cannot say anything about what we are doing with respect to regulatory activities until they are announced. So I cannot brief you on what we were doing, what we had been doing, before it was done, nor can I brief you on what we are doing before it is done, but we did take that recommendation very seriously. We are looking at those, and the sense for this meeting was that that recommendation, essentially, has been made. We are acting on it, and we don’t see the need to have another discussion and recommend it again, and so we wanted to focus on those areas where additional discussions were needed.
MR. HOUSTON: But there were some other discussions, I know, at least last year, when I was in the confidentialities group, with regards to issues related to state law, as I recall, and, obviously, that is a much more complex issue, but I know in the State of Pennsylvania, where I am from, state law is going to be a definite barrier to establishing local health information infrastructures, and so I am just - I don’t want to loose sight of it, because I think it is -
MR. YASNOFF: I agree.
MR. HOUSTON: - hugely important to try to make sure -
MR. YASNOFF: I think within the area of confidentiality, those ought to be discussed, and, again, we are cognizant of those.
MR. HOUSTON: Great.
MR. YASNOFF: Let me tell you what my experience has been with these regulatory barriers.
I consistently hear from people as I give talks across the country that there are these regulatory barriers, and what I ask people to do is to send me the legal opinion about those. No one has actually sent me such a legal opinion at all. I have literally not been able to document, even in an email, a single legal opinion related to this, but I believe that they exist, but other people have been able to document these, and when they research them, they find that the issue is not that the regulations prevent the proposed action, but that the counsel involved misinterpreted the regulations and was being overly conservative, which is also a problem which we recognize.
So we are - I just want to emphasize, we are aware of those problems. We are doing what we can, but I can’t tell you what we are doing.
DR. LUMPKIN: So let me see if I understand it. This is a problem because of lawyers.
MR. YASNOFF: I didn’t say that.
DR. LUMPKIN: (Laughter).
MR. YASNOFF: But it could be true.
DR. LUMPKIN: But it could be true. (Laughter).
MR. YASNOFF: And I just point out I am not under oath.
DR. LUMPKIN: (Laughter). I couldn’t pass that one up.
MS. DEERING: I have a little diplomatic point, and then three substantive issues around the breakouts.
The diplomatic point is under your conference endorsers, and as we are staff here, part of the Office of the Secretary, you have the Department of Health and Human Services listed separately, and then you have AHRQ and CDC listed as other organizations, and, with a smile on my face, I point out that they are very much a part of the Department of Health and Human Services, and I urge you, in your graphic layout, to make sure that they are grouped with the Department of Health and Human Services.
We know that they are sovereign nations - (laughter) - and we have NIH, the most sovereign of them all, speaks directly to God, as we say, but, anyway, we like to remind them now and then -
DR. LUMPKIN(?): We have a Messiah going there. (Laughter).
MR. YASNOFF: I will refer -
MS. DEERING: I’m an evangelist -
MR. YASNOFF: I agree with your commend and I appreciate it and I will refer it to the NHII diplomatic department for resolution. (Laughter).
MS. DEERING: Good. Good. And to the graphics people -
MR. YASNOFF: We have our liaison with the State Department. We’ll be working on this.
MS. DEERING: Good. Good. Good. We can negotiate that.
Turning to the page that shows the breakout process on your conference overview, I have some comments about the personal health bullet, the governance bullet and the clinical research bullet.
As you would expect of me, in characterizing the personal health breakout session as focusing on inviting consumers and patients to participate in discussions, that is extraordinarily condescending and it doesn’t get at the substance of what I know you really are trying to do and what David Lansky is trying to do, so I suggest alternate language developing the role of consumers and patients in the NHII and LHIIs -
MR. YASNOFF: If you could pass that to me in writing, that would be very helpful.
MS. DEERING: Happy to.
And under governance - and I know that this came out at our last meeting, you are still only talking about how to organize LHIIs, and I think that language is a carryover from last time, and you have shifted your conference goals, et cetera. So, based on my understand of your shift in orientation, I would encourage you to expand that language as well, and getting into diplomatic issues, perhaps it is the sovereign relationships between LHIIs and their - you know, maybe it’s the federal structure of the NHII to continue our - image here, but I think that it would help if that were expanded.
And then under clinical research, again, it seems to me that you have framed it even more narrowly, in that it is purely about discovering health risks, using these data streams, and, again, my understanding - I’ll ask you there. Was that intentional and is that supposed to be the sole discussion at this conference about clinical research within the NHII?
MR. YASNOFF: We would be happy to expand it.
MS. DEERING: I mean, it’s important, but I just didn’t know if it was intended to be -
MR. YASNOFF: No, and I appreciate your comments on this. We have not reviewed this since the last meeting.
MS. DEERING: Okay. Well, I can suggest some language on all of this.
MR. YASNOFF: That would be appreciated.
MS. CRONIN: I have another point about how you are describing the various breakout sessions. I think that during the last NHII workgroup meeting we talked about referencing quality or patient safety in the context of measuring progress, given that that is one of the short- and long-term outcomes that we would like to see. So if that could be incorporated in some meaningful way to these areas, I think we would be consistent.
MR. YASNOFF: Actually, I can - we did address that issue, and let me speak to that directly.
I think it is completely clear that one of the most important goals of NHII is to, in fact, enhance the quality and safety of patient care, and, as you recall, at last year’s meeting, there was a draft on quality and safety, and, basically, it is so clear that you need a health information infrastructure to improve quality and safety that we did not feel that any more discussion of that was worthwhile. This is - again, we have recommendations in that regard. It is well known.
Now, in terms of including quality and safety measures in terms of measuring progress, I would not want to include that in the description of the measuring progress section. That is up to the folks in the breakout group whether they want to include that, and, in fact, if we were in such a breakout group, I can see arguments on both sides, in terms of whether those kinds of measures should be included.
I think, at this stage, the types of metrics that we need are not related to quality and safety because it is going to be some time before we have enough infrastructure to influence quality and safety in a measurable way. So I can see that you might argue against that.
So I have no objection to it, but I think that if I include quality and safety, then I think it would be necessary to include a whole laundry list of potential metrics which I don’t really want to include.
MS. CRONIN: But I think it is also important to keep in mind that improvements in quality and safety could end up helping with sustainability -
MR. YASNOFF: No argument.
MS. CRONIN: - and being a key factor in decision making to even initiate LHIIs or, you know, within an institution.
I know, in the Connecting for Health meeting, a leadership sign that Carol will talk about - there was some very clear expression or comments made that we may not have the ultimate business case - to even start - these activities around different regions. We are going to have to do it because it is the right thing to do for quality of care. So -
MR. YASNOFF: It’s precisely because everyone agrees on that that it is not here, because it does not need to be discussed. There are no decisions to be made. It has all been discussed already.
MS. CRONIN: But I think that there are issues around evaluation and - that have not really been decided upon.
MS. RYPEN: I think the great thing, though, is during the breakout group, I’m sure that’ll be discussed, and I know that people that are doing some of the work are including some of the discussions, but, again, it’s up to them, because there are the topical experts with regards to what do they believe are included in that - but just to let you know there is - there will be. So -
MR. YASNOFF: If there is anything I have learned in this process, it is that the topics that are suggested for discussion are only vaguely related to the topics that actually are discussed, but I should mention specifically that before excluding quality and safety from any of these discussions, I did have a discussion about this with David Bates, who was - you know - the lead in following safety, and he agreed that we have said this over and over. It’s all agreed, and there really - to have another meeting where we discuss that we need information infrastructure for quality safety just is not a productive use of people’s time. If people want to talk about it - I mean, nothing that is on any of these pieces of paper is going to preclude people from talking about anything they want to at the meeting.
MR. BLAIR: Can you hear me?
MR. YASNOFF: Yes, Jeff.
MR. BLAIR: I would like to make a suggestion, and it is to try to avoid a problem that we have encountered with the evolution of electronic health records, and I am concerned that we encounter a similar problem with the National Health Information Infrastructure and LHIIs.
We have gone through quite an evolution with electronic health records, but we saw a period of time, beginning, I’d say, in the mid-1995, ‘96, ‘97, where some folks would have some functions that were part of an electronic record, and they would either say that they had an EHR or other people would perceive they had an EHR, and when they didn’t have all the functions and capabilities that other folks wanted, they really became disenchanted with the capability of EHR.
So we went through a period of disappointment, disenchanted expectations that were not met, and my thought here is, I am a little bit concerned, as we begin to have growing support on Capitol Hill, Congress, the Administration - and the press, eventually - for NHIIs, that they would look at LHIIs - we identify that there is an LHII here, an LHII there, people would look at those and say, well, those are geographical subsets of where we want to go, and so I am wondering if we could come up with some kind of a distinction, maybe referring to the ones that exist today as emerging LHIIs versus a comprehensive or complete LHII that would be closer to our ultimate vision of where we want to go.
MR. YASNOFF: I certainly have no objection to that.
DR. LUMPKIN: How about LHII in situ? (Laughter).
MR. BLAIR: I couldn’t hear what he said.
MR. YASNOFF: It’s just as well. (Laughter). Unless you want to repeat it, John.
MR. BLAIR: No, that’s okay.
DR. LUMPKIN: No, no. I think your suggestion is better, Jeff.
MR. YASNOFF: I think that is right, and I think that, again, the work we have begun to do with requirements, hopefully, will lead to a consensus set of functions that an LHII must have in order to declare itself complete, including criteria for participation in a given community, which, obviously, would have to be very, very high. So I agree with you. Is there a way you think that should be reflected in the material for the conference?
MR. BLAIR: Thank you for asking that question, and I don’t have - I haven’t thoroughly thought this through. I just reacted to it as I was hearing the discussions.
The first thought that came to my mind was to refer to the existing networks, existing LHIs as emerging LHIIs, but maybe we need to give that more thought to see how we could make the distinction.
MR. YASNOFF: Okay. I’ll try that - I’ll try using that term and see what kind of reactions I get, and I’ll let you know.
MR. BLAIR: Okay.
MR. YASNOFF: It would be interesting to see how emerging LHIIs - whether they like being called that.
MR. BLAIR: (Laughter).
MS. DIAMOND: Yes, I was just going to make a suggestion, in response to Kelly’s comment about quality and safety, and I do agree with Bill sort of saying having another session on whether an HII is important for quality and safety maybe isn’t the right angle, but I was going to suggest - and I know you would agree with this from out last meeting, too - that one way to look at this is also to say that we have a tendency to think linearly about this sometimes, in that the infrastructure will have a lot of derivative beneficiaries. I worry about the patient being the beneficiary. Somebody else might worry about quality, safety. Somebody else might worry about research, public health, what have you, and I agree those are all derivative beneficiaries, but, in fact, the timetable is not coordinated, and so there are lots of efforts and investments and projects going on that could be laying some of the groundwork for the NHII and are well-funded and out there, and I think sort of flipping it and asking whether or not there is an opportunity to think about the IT investments being made in quality and safety projects as part of building the NHII, rather than always thinking that the NHII is there first, and those are built as derivative outputs.
And we talked a little bit about this in our meeting. I think the same opportunity is there for public health, so that we start to have a conversation that is more aligned than looking at these as separate silos or sovereign nations or whatever the right term might be, and I would just make a suggestion that it might be interesting if you took some of the investments that are getting made either in the demonstration projects, the CMS, you know, all of the other funding that Art does outside of the II’s and sort of pool that into something that would look at IT investments or IT projects that that might be an interesting angle, and it might be a way to sort of begin to tie those pieces together.
DR. LUMPKIN: Steve.
DR. STEINDEL: Yes, thank you, John.
I would like to pick up a little bit kind of in a parallel a little bit with what Carol just said and picking up on what Jeff and Kelly said with regard to patient safety and emerging LHIIs.
I like Jeff’s phrase, emerging LHIIs, because I think it puts that in a good context, because, as far as I know, none of the LHIIs can communicate with each other, and that is an important aspect of the NHII. So using the word emerging, in that case, in the context of the NHII is very important.
But what I - in regard to that, what we are hearing a lot today with the electronic health record, which we are really trying to beat onto people - we are saying this is very important. We are saying this will improve patient safety. That is an important reason to have it. We need the decision supports in there at your local place where you are delivering medicine at your point of care.
Now, the difference between that - and we are driving that very hard and I think - I don’t think anybody argues with that, and I think it is more or less a given, but the extension of that to why do I need all these point-of-care systems that are handling quality, why do I need them linked together nationally, I think that message is not as clear, and I think that is the message we should try to drive forward at the NHII conference, not necessary quality NHII, yes, it’s axiomatic. I don’t think that is axiomatic to a lot of the people. It’s axiomatic to everybody in this room.
MR. YASNOFF: Well, actually, you could have a complete fully functioning NHII and not improve quality and safety one bit.
DR. STEINDEL: Right.
MR. YASNOFF: Although, it would be difficult to not improve it at all, but, you know, you certainly - let me put it another way. It certainly would be easy to miss the bulk of the quality and safety benefits if you are not careful about implementation.
For example, as you point out, the need for decision support at the point of care. Without decision support at the point of care, you miss most of the quality and safety and efficiency improvements of information technology, and one of the points that we have been making over and over is that in order to have that decision support at the point of care, you need to have standardized and coded information that can be processed by decision support algorithms, and, therefore, the widespread universal transmission of free text, in fact, misses most of the benefits that we believe are important for NHII and the reason that it is such a high priority. So I couldn’t agree more.
My question back is how do you - how can we emphasize those points within the framework of the meeting or are there some changes that need to be made to the framework?
DR. LUMPKIN: Can I maybe make a suggestion? Because I think we all tend to agree with that concept, but we - as Bill raised, there are issues that really need to be - a case for it we think it’s been made, and that, to my mind, says plenary speaker.
MR. YASNOFF: Right. Which we have.
DR. LUMPKIN: To have a plenary speaker to make the case and to infuse, therefore, in all of the discussions the importance of -
MR. YASNOFF: Right.
DR. LUMPKIN: - doing this with quality as being an underlying -
MR. YASNOFF: And, actually, one - I mean, we have very few plenary talks in this meeting, as you well know, and we have - one of the very few plenary sessions is devoted to NHII benefits which are, basically, quality, safety and efficiency. So - and Carolyn Clancy is going to come and talk about the need for NHII for quality and safety, and the case is very, very clear.
But I am not sure that that - you know, obviously I agree that we need to do that. That was our suggestion to begin with, but I think that the idea that we have to build the NHII in such a way that we do not miss these benefits, I believe is very important and we, at a minimum, we can make sure that in the materials that are prepared for the topic discussions that those kind of overarching points are made to each group.
DR. STEUERLE: I think Kelly was - one thing Kelly was stressing what perhaps we should include some metrics for measuring progress that involved quality, and your comment back was, well, we all know that needs to be done. We don’t know if that should be discussed - but we might want to think of asking that group to discuss ways to see how the dissemination of better healthcare is facilitated through the NHII. Like, for instance, the gentleman who is sitting next to me from NIH, they are undergoing a massive project on getting research information out into the clinical community faster, and the NHII will help facilitate that greatly, and we might want to put in a metric on that -
MR. YASNOFF: I agree, and I think the place for that is in the background material for that session, but I don’t want to prejudge or influence in advance what that metrics group talks about. I will be shocked if there are no recommendations for metrics related to quality and safety that come out of that group.
MS. DEERING: I have a - I don’t know if it is a comment or a question to both Carl and Steve, and it would certainly effect Kelly then - and it gets at Carol’s comment about the multiplicity of efforts that are already out there, and it occurred to me that maybe there’s another type of metric that might be of interest mostly to HHS within its realm, and maybe - for our overview, and my question to Steve is I don’t see this in HIMS or any of the other metrics discussion - maybe I’m wrong – which is the metrics that I have seen are still mostly bean counting. You know, the discussions are about which beans to count.
Is there any discussion or any effort to try and think out what kinds of connections and links between projects and efforts could be valuable from a policy point of view, not necessarily from a - from a policy point of view to actually - is that an old issue or is that being looked at?
MR. YASNOFF: I think that is a very important point, and I can tell you that I am very dissatisfied with the progress that we have been able to make in terms of defining what the - even what the universe of metrics to choose from should be, and I think the reason is that it is a difficult issue.
As you know, I brought that issue to this workgroup and got some feedback. We are thinking about ways we can address that, and we believe that, at this point, we are going to need to engage some contract assistants in order to begin to define a universe of areas where you may wish to measure, but I think that whole area of relationships is very, very important and speaks directly, in fact, to the workgroups 2001 report where the NHII definition includes, if I am not mistaken, the word relationships, and so it obviously makes sense that we ought to, if possible, try to measure those relationships, because, clearly, I can tell you, in communities, that you don’t get health information infrastructure until you first build strong and numerous relationships among all the stakeholders in the community. I’m not sure how we could measure that, but it clearly needs to be done.
MS. DEERING: It may be, Ken, that you are doing some metrics within your own sphere that would be pertinent in terms of not just measuring the quantity of something that is happening out there, but since you are explicitly linking such a wide variety of entities, but it does seem to me that it is almost a challenge for HHS itself, if nothing else, only within its own range of funding efforts.
What do we want to require them to do with each other? Do we even know? And do we want to spend the time to say, okay, AHRQ, when you go out, this is what you’ve gotta be able to do with whatever ASPI is funding. Okay. CMS, when you go out, whatever you do, this is what you’ve got to link out to HERSA(?) in its community health plans, and you’ve got - and we’ve got to bring everybody within the larger circle, but defining what that is that we are asking them to do together, I think is a little bit of an intellectual challenge that people should be equal to, and it’s got huge policy implications for us.
MS. CRONIN: Yes, I think we are just starting to get at that, and maybe we can talk about it a little bit later. I think it’s really -
MS. DEERING: Are you coming up with anything, Ken, in that regard?
MR. BURTON: We are coming up with a diverse collection of measures, as you might guess, in different contexts, because, in our repertory, we are, in many ways, related to what the NHII is doing, but in other ways also orthogonal, because we are taking a broad cut of biomedical research.
But, yes, actually, we are looking at metrics that look at - and it is hard for me to do this without being too much in the weeds, because I haven’t thought of it at the global level, but, you know, how we actually go about sharing tools, how we go about sharing infrastructures, how we - so things that are not the direct - you know - how many lives have we saved? How many - you know - well, how many dollars have we saved, but, actually, what is the sharing ratio of important biomedical research tools? How commonly does a wrapper that we have for a particular infrastructure get deployed at multiple locations? How commonly can a data set that is generated in one location be communicated and utilized by another community?
So, I mean, so we actually have a whole collection of those that we are going to be tracking as part of this, and I think, again, there is parallels, clearly, to what NHII would want to do, and as well direct intersections, because, obviously, in particular, in the area of clinical research, there’s touch points for much of what we are doing - what the NHII is trying to accomplish.
DR. LUMPKIN: Let me perhaps suggest, in the time that we have remaining, that we may - I would like to maybe suggest that we look at some of the breakout groups and have some discussion about the preparatory work, particularly to the extent that there may be some ideas that we may have to suggest on how those documents or issues the documents should address that would help frame the discussion, suggestions we may have for authors or approaches to developing those.
MR. YASNOFF: Or volunteers -
DR. LUMPKIN: Or volunteers.
Let’s start off with the personal health - and I don’t know what your thoughts have been already moving forward on framing that, building off of work that has happened before. We have, obviously, as a workgroup, have had a lot of concern about that dimension being the slowest-developing dimension.
MS. RYPEN: (Off mike) - are actually taking - moving forward on it, and they already have draft work. I mean, again, we are treating these as - you know, the leads are the ones that are taking it - looking at what is being done, what was done at NHI04 - 03 and moving it forward.
So, with regards to how best to provide input into these groups would be - you know, we would like your suggestion. I’m just saying that they are - many of them - already going on and moving forward.
Bill, I don’t know -
MR. YASNOFF: Yes, I mean, we’re happy to take suggestions into that process. This is by no means finalized.
I will say that our intent is that these products will be finalized by mid-June.
MS. RYPEN: Yes -
MR. YASNOFF: So we have approximately two months before they are finalized, but they are all still relatively early. We are happy to take any comments or suggestions into the process.
DR. LUMPKIN: I think that you have identified key players and I were to make suggestions, I probably would make those suggestions.
The question that comes to my mind is to -
MS. DEERING: Actually, on that, the only thing that does occur to me that may be one suggestion for them, and David would certainly know all these players, but it could be very useful to get one of the providers or payers who is fairly far ahead with patient-centered care and very comprehensive, not just treatment - and we’ve got Blue Cross and Blue Shield in the room, and they’ve got a good portal, and certainly Kaiser has excellent patient-centered efforts, so it could be useful to make sure that from the get go you are incorporating lessons learned for the provider domain.
MS. RYPEN: Yes, they have actually identified two people - but it would be premature to announce -
DR. LUMPKIN: Okay. Governance.
DR. STEUERLE: Well, in governance, you know, one sentence says how to organize LHIIs. I would like to see how to organize and link -
SPEAKER: I think Mary Jo has different language -
SPEAKER: Yes, we have that language.
DR. STEUERLE: But the point I want to make that - I don’t care what the language is.
MR. YASNOFF: We definitely want to expand the area, but I guess what we are looking for are there specific suggestions of issues to consider or things that the workgroup would like to be sure are included in the thinking process in preparing the background materials.
DR. LUMPKIN: I think -
MR. YASNOFF: This particular issue is a very, very difficult one.
DR. LUMPKIN: Yes, and I think the - where I would have a concern would be to get the input from the United Health Care, Kaiser, those organizations that sort of span multiple regions of the country to try to get some input, and the vehicle I was thinking of - even with the personal health - is that if there is an early draft, rather than trying to influence that, but maybe having a select group of responders who may be willing to prepare a page or a page-and-a-half that could be then sent or made available to the participants, so they would not only see what the group leaders are thinking, but some initial response, and that will help allow the discussion to not have to retread some of that area, but actually be more of a thought thinking and taking forward. So that would be my thought in the government’s area.
MR. BURTON: And I guess I would like to interject what I’m not sure is a popular comment here as well, but leveraging a little bit what Mary Jo is saying, it is - there are other national activities going on, even over and above what is happening in the private sector, that is going to happen through NIH and other activities. So figuring out how we coordinate or govern all of those - to a common setup standards I think would be - standards and operational units I think would be very important and actually help stitch everything together. So, clearly, national things are happening in Blue Cross and Kaiser Permanente, but the NIH is doing activities, CDC is doing national activities. I mean there’s other activities that are crosscutting to those that would be important in a governance structure.
DR. LUMPKIN: And why should an LHII care? Well, I mean, that is sort of a rhetorical question, but there is some extent to which that is well and good, but, you know, I’m in Springfield, Illinois. It doesn’t really matter. I’m just trying to share information with the doc down the street.
MS. DEERING: But I think articulating - is important, because it does matter, because you are also having to report probably through CDC - and you probably have people in your region that are - maybe they are one of Ken’s grantees, et cetera, and, certainly, you’ve got CMS, who is an active player. So you do have to care -
MR. YASNOFF: Well, you have another issue that is even more direct, which is you take any arbitrary area in the country, and that - if you say here is where we are going to build an LHII, and adjacent to that area you have - you know, living on the boundaries, you have people who are going to get their care in the next LHII over in every direction. So you have to - at a minimum, in order to, again, satisfy the requirement of being able to deliver complete patient information at the point of care, you have to be able to communicate with the patient information to the adjacent LHIIs, and, if we do that, with a set of standards and a set of standard functions, the same standard functions will then allow you to communicate with VA, DoD, CDC, NIH, other national organizations.
So I think that, in Springfield, Illinois, what I would say is that wherever you draw the line, you have to be able to communicate outside, and the issue then becomes how do we define the set of functions that need to communicate between LHIIs? Where do we define what those are and what the standard should be? And that is a governance issue -
MR. BLAIR: This is Jack. Can you hear me?
DR. LUMPKIN: Yes, but I need to see your hand.
MR. BLAIR: Yes. (Laughter).
I would like to chime in on this, that we also have someone really focus on this issue from a slightly different vantage point, and, again, I am going back to the history of information systems development within our healthcare industry where we saw certain vendors and certain healthcare institutions adopt standards because they saw the benefits of interoperability, but we also have vendors and systems that exist today that are very successful major vendors that basically have wound up saying, I am going to put my priority on improving patient care or selling my healthcare information systems and having it functionally rich, and I am not going to get slowed down by waiting for the standards to all be in place for me to be interoperable.
Both of those viewpoints exist. Both have been successful, but, as we develop the national health information infrastructure, Bill, with what you just said with the importance of being able to do the linking together, and, Steve, you were also emphasizing this point, we don’t want to be in a situation several years from now where there are two major groups of LHIIs, those that are interoperable and those that have very high function and have been able to develop quickly, because they ignored standards for interoperability with others, and I think that we actually need to have an individual or a couple of individuals really address the issue of how do we put incentives in place. They might be financial incentives. They might be regulatory incentives. They might be other types of incentives to tilt the balance towards the adoption of standards for interoperability.
DR. STEUERLE: Jeff, if I may comment on that, when I was focusing on governance, agree totally with you. I think there’s multiple areas within the breakout groups that we will be addressing the distribution of standards and using the same standard, but when I was looking at governance, I was looking at more of the legal and the contractual issues about forming LHIIs, and especially in the exchange of data between LHIIs that needs to be looked at, and a good example was brought up when Bill mentioned what happens if you have an LHII that borders on another LHII in a region, and we picked on Springfield, Illinois, but I would rather pick on Chicago or Chattanooga -
SPEAKER: Careful there.
DR. STEUERLE: Well, basically -
SPEAKER: Now, you are getting close.
DR. STEUERLE: You know, because they are boundary cities between two states -
MR. YASNOFF: DC.
DR. STEUERLE: DC is another area.
MR. YASNOFF: That is one of the reasons we are working on DC, because we figure if we can figure that out here, that probably will - either we won’t be around to - (laughter) - or we will be able to share some - lessons learned.
DR. STEUERLE: Yes, that was the point I was making, Bill. Thank you. You are sensitive to it.
DR. LUMPKIN: But I think that the - you know, we are kind of swinging the pendulum.
What I want to be careful about in the governance is that we do think about that whatever we do there is going to need to be a balance between the local needs and desires and the regional, national needs and desires, and so just to encourage us, we are moving the preparation, that we have a balance presented to the breakout sessions, so that they can see the interplay in the issues.
MR. HOUSTON: That is as much of an architectural standards issue, I would think as a governance issue.
DR. STEUERLE: You know, some of it is legal.
MR. YASNOFF: I think this issue of how the LHIIs relate to each other is something that ought to be brought to the attention of all the different groups to at least consider as part of their deliberations, because it clearly effects governance. It clearly effects architecture. It essentially creates a set of requirements for standards, one of which we are already addressing which is the interoperability standard for a complete record, but that is not all that is needed. There are other standards that are needed, I believe. Those need to be addressed.
The measuring progress, obviously, if there is no measure of progress that relates to how LHIIs link to each other in any way, we are not measuring the right thing or we are missing a big piece.
Population health. How are we going to do anything about population health if the LHIIs don’t talk to each other? That is going to be very difficult.
Clinical research. I don’t think we are going to restrict ourselves to local area clinical trials, although I assume my NIH colleague will not disagree.
MR. HOUSTON: Framing that to what stage is set, then, I guess maybe, then - I guess maybe what Steve said was is we need to reserve governance to those things that inhibit all the other pieces from coming together, so that LHIIs flow up to it - an NHII concept, whether that be - whether it be legal issues or - you know - an overarching framework that, frankly, has to be in place, I guess maybe that’s it. So it’s sort of like, I guess, you know, railroads in the 1800s where the track sizes and everything differed, based upon where you were and what railroad you were on.
MR. YASNOFF: Right. But it’s worse than that, because even if we define the track sizes, it is as if each state has certain specifications for the size of the engines, and so when you get to the state boarder, you basically have to change engines to get into the other state.
MR. HOUSTON: Exactly.
DR. LUMPKIN: But just to take the railroad analogy to its ultimate, there are certain areas in the mountains of Virginia and other areas where a 4.8-foot gauge doesn’t work and you actually need to have a narrow gauge in order to be able to accommodate the curves. So one size doesn’t fit all, but it should where it makes sense for it to do, and that really is the interaction between the local and the national standards.
MR. YASNOFF: And, you know, I certainly would not at all minimize these issues, particularly the communication issues, and I hark back to my experience with the immunization registry in Oregon when I had a conversation with the folks in California about exchanging information, and, basically, the conversation went like this: They said, well, here in California, we have a stricter confidentiality law than you do in Oregon, and, therefore, we can never talk to you. Goodbye. (Laughter). So, obviously, that is an obstacle - those kinds of obstacles, when it comes to healthcare information, have to be overcome.
If you look at metropolitan areas in the United States, a huge percentage of them actually go over state boundaries. So this is a huge issue.
MR. HOUSTON: Question. Attorneys aren’t supposed to ask questions they don’t know the answer to already, but -
DR. LUMPKIN: (Laughter). You just gave away a secret. You’re not supposed to do that.
DR. GREENBERG(?): This isn’t a court of law.
MR. HOUSTON: That’S right.
DR. GREENBERG(?): This is many things, but not a court of law.
MR. HOUSTON: Thank you, and I am not under oath.
Are there models - is there something that we can look to from the European Union that - EU and what they are doing with regards to privacy and other things that might help us in this regard or are we really charting such new territory here that - and, again, I don’t know the - I mean, is there another model out there that helps us at all?
MR. YASNOFF: I think there are lessons to be learned from what is going on in other countries. Those lessons learned may be things we wish to avoid, and in the case you mentioned, I think that may be the case.
There are increasing efforts to facilitate the discussion of those issues between countries, and, in fact, there are some preliminary discussions of having an actual conference to talk about the developing health information infrastructures around the world and to facilitate sharing that information. So, yes, there are some lessons to be learned.
On this particular issue, I think that from what I know of what the European Union is doing, it does not particularly facilitate the sharing of information. In fact, quite the contrary, makes it quite difficult.
So, to the best of my knowledge, there’s no solution out there somewhere else that is easily importable, but I am anxious to find one.
DR. LUMPKIN: Okay. Let’s move on to the next area. I think we’ve given you enough on governance, at least that is how I would govern -
Anyway, incentives. Here - no, please. What I was going to do to frame this up is, as I have worked more and more with health economists, I have learned that - how little I know about health economics - (laughter) - and so I was -
DR. GREENBERG: Fortunately, Gene is -
DR. LUMPKIN: Well, yes, I know, because I saw his hand and gave me a good lead in, but maybe - I don’t know where your thought is going on that.
One of the thoughts I had is that CMS is currently actively involved in looking - under the Medicare Reform Act - of looking at incentives for quality, and there has been some work that has been done, I know both internally and also with some consultants that they have been working with on looking at models for incentives, and that might be a nice lead in to look at, because there are similar obscure and contradictory incentives in the area of quality. So I think that may be one area that I would suggest looking at. Gene. And maybe - were you volunteering to help on this one?
DR. STEUERLE: Yes, I would be glad to.
When I look at this vast health structure we have built in this country - the latest numbers I have calculated, we are spending something like over $15,000 per household on healthcare. That is using CMS numbers and dividing that into households.
MR. BLAIR: Did I hear you say $15,000?
DR. STEUERLE: That’s correct. Per household.
MR. BLAIR: On healthcare.
DR. STEUERLE: That’s right. That’s adding everything together. That’s counting the research and the insurance companies and everything. That is just the CMS numbers divided by the 110 million households, and I have over half of it coming from government, because I add in the tax subsidy. So government is chipping in maybe $8,000 per household.
I look at this system and I keep wondering why, with all this money, haven’t we been able to create what I think the people in this room think would be an obvious advance would be this type of - infrastructure, and I have to conclude, as an economist, it must be we have in place some very bad or at least wrong set of incentives, and what I would really like to see out of this section is actually two things.
One is I would love for some of the people who come in the room to be really encouraged to talk about what are the disincentives within their own structure, and, as far as that is concerned, I wouldn’t mind having some of the government people either, given that they’ve got half the money at stake or that is being thrown around. I wouldn’t even mind knowing why NIH - I wouldn’t mind somebody from NIH saying, you know, we don’t do this because if you look internally to what our rewards in our structure are, there is really no reward for us to do this, but there’s a lot of reward for us having this clinical -
But, at the other end, I would also like to have some focus on what are some possible incentives that might make things move - and, here, I almost have the sense that this ball is sort of being pushed up the hill and we are almost near the top, and we are talking about - you know - we’ve got this obstacle in privacy and we’ve got this obstacle in terms of protocols - I’m suspicious that pretty soon that ball is going to go to the other side of the hill and what we are going to have is instead of people complaining nothing is going on, they are going to be complaining that we are not quickly enough - more quickly than we can probably do it, adopt the protocols, take care of the privacy issues, and I think - you know - particularly about your example about the Oregon-California sharing, what would happen - this is off the top of my head, which may be no more advanced than off the bottom of my head, but suppose that the Secretary of HHS were able, through regulation or by some change of the law, to say in paying for shots for Medicare recipients, we are going to pay $3 less for any shot that is given that is not backed up by a) an electronic health record within the office of the doctor giving it, and b) is not in a form that can be shared across states or something.
Well, my guess is that if he could do that that there would be a clamoring at HHS for figuring out, well, how the heck can we do this? The California people would be complaining about the privacy issues and how can they resolve that so they can get the extra $3, and I am wondering if some people can’t be thinking in this section - what are some incentives that might, in the small - I mean, I see this in the small, but I think what happens if having to have an electronic shot record meant all doctors decided, well, I’ve gotta set up an electronic system. If we’re going to do it for shots, I’m going to do it for some other things, and whether there aren’t incentives - even small ones that could be put in place even for a few items that might start create a snowball effect. Again, my notion about having this ball roll down the hill.
So I would love to have this structured in a way that we really have people think freely, even - have a lot of wild ideas than none at all in terms of, as I say, what are some possible incentives, even the small, that might really, really change the dynamic of the system, as well as my first notion about having some people tell us what are the disincentives -
MR. YASNOFF: I couldn’t agree more. I think - and we will be sure to include in the consideration of that group, the issue of what are the current disincentives, because removing those, in some sense, could be equally or perhaps even more important than putting in place good incentives.
And, in fact, the incentives now, as Don Berwick(?) has said many times, every system is designed perfectly to produce the outputs that it produces, and our healthcare system is designed to produce very expensive, very inefficient care, which is of very inconsistent quality, and, in fact, one of the obvious disincentives is that if you practice quality care, not only are you not paid more, but you are likely to decrease your income if you do a better job, and, clearly, that is not a good incentive.
I will say that, in addition to, obviously, the deliberations that are going to occur at this meeting, there are already discussions going on in the department about those very issues. We are also in our group sponsoring some specific research looking at that exact issue of what kind of incentives and what amount of incentive is required to move the adoption of electronic health records and to facilitate the adoption of LHIIs.
And just - I would summarize the current state as follows: That we have the benefit now of a substantial number of experiments in pay-for-performance for physicians, and what we are finding - and I am overgeneralizing, but, typically, the results of those pay-for-performance programs are disappointing, and so, in essence, what we believe is the case, is that we are asking physicians to perform, but we are not giving them the tools they need to perform, and the analogy here that I like is if you take a group of ordinary people and give them a financial incentive to travel at 25 miles an hour, and you do not give them any tools, few of them, regardless of the size of the incentive, will be able to accomplish that task, but if you give them bicycles, a number of them will be able to perform, and if you give them automobiles, probably all of them will be able to perform, and so the question, then, is what is the equivalent in the information world? If we are talking about financial incentives, what level of financial incentive is necessary? Is it sufficient to remove the disincentive or what percentage of income is necessary - increase is necessary to incentivize the adoption of the HR’s or is there a specific dollar amount or does it vary by specialty? And so I think all of these issues are of tremendous interest.
DR. LUMPKIN: Well, let me just throw one other piece into the pot, and that is that most of what we look at incentives are tied into what I think of as being a capital-intensive conversion to electronic health records, and that is a model where you buy the equipment and you buy the software and then, every now and then, you have to buy the upgrades.
There are also models in back-office electronic health systems where the vendor sells, on a per-transaction basis, the utility that - the ability to use their system, and those sort of models then may lend themselves to different kinds of incentives or reimbursements, because there is no up-front capital cost.
MR. YASNOFF: That’s right. I agree. I think that if we provide the financial incentives, one of the results will be that the creativity and entrepreneurship of the private sector will be very helpful in moving these systems along.
As an example, in the hospital environment, where savings are, in many cases, already documented, there are vendors that will essentially give you in a hospital their information system under a contingency agreement where you share the savings with them as a form of payment. If we had such incentives in physicians offices, I suspect that similar vendor arrangements might be possible, but we - clearly, those savings have to be clearly there, so that there is something to share to pay for those capital costs or to pay for ongoing use of non-capital systems.
MR. BLAIR: This is Jeff. Are you able to hear me?
DR. LUMPKIN: Yes, let me just make one comment and I’ll toss it back, because I just want to remind the group that Bill showed us data at our last meeting that the difference between the inpatient setting and outpatient setting was that the benefits in the inpatient setting accrued to the hospitals, but the benefits in outpatient settings did not accrue to the providers in adopting electronic health -
SPEAKER: In general.
DR. LUMPKIN: Jeff.
In general. In aggregate.
Jeff.
MR. BLAIR: There’s been, I guess in Health Affairs Magazine and in others, a fair amount of discussion of pay-for-performance, and I thought, from the things that I had read, that that was very much on target, in the sense that it wasn’t going to be paying for the hardware or the software, because it is so easy to wind up implementing an electronic health record or the software or the hardware or the network and not really improve quality or safety or cost effectiveness, where if we look at changing the healthcare reimbursement system, where our reimbursement system is focused on improved quality and safety and efficiency, then, it requires that the transformation to achieve that is that the information infrastructure be put in place.
So I thought that the sections in the most recent law passed in November - the Medicare Prescription Drug Improvement and Modernization Act - that that already set out a set of incentives which comes to the reimbursement system which leads back to the funding for IOM to be able to have the indicators of performance and the work being done by HL7 on the EHR functionality model to make sure that the vendors are producing the functions that’ll support those capabilities.
So, you know, given all of this, I was kind of puzzled by the conversation here on incentives, because I thought that that was the model we were converging on for incentives. What am I missing here?
DR. LUMPKIN: I think you’re right, but the issue is is it’s just as it is with pay-for-performance and the models or the - really, the studies that are encouraged under the act -
MR. BLAIR(?): Could you speak up a little bit, please?
DR. LUMPKIN: But I think the point is is that we don’t know quite how to do pay-for-performance yet, and we are not sure which of those models for pay-for-performance will work, and just as we need to look at that and sort of get some experience and learn from those experiences, the economics - the micro-economics in the office as well as the overall system economics, are different for quality than they are for the use of electronic health record, and we need to understand those differences - the similarities and the differences.
DR. STEUERLE: I think there is an analogy between the debate in almost all public systems or private systems as to whether you want to measure inputs, outputs or outcomes.
In the ideal, you always want to subsidize the outcomes. The complication has always been that we often don’t know how to measure them very well, so you don’t stop for the fact you can’t measure the outcomes and still - at certain points, you don’t want to pay for outputs or you don’t want to, in fact, pay for inputs. You know, an educational system being a prime example. We ideally want to pay for the outcomes of the students, but it still doesn’t mean, at some point, we don’t decide we want to pay for good teachers, even though that’s an input. So that is sort of the dilemma.
If you could measure all this perfectly well, you’re right, and that is where the literature sort of gets very, very mixed is how well can you measure a lot of these outcomes. Some you can. When you can do it, you really can get quality improvements, but you can’t stop there.
MS. DEERING: Picking up on a couple of comments that John made, getting at - the first was about the model where a vendor might provide a utility. The second was picking up on your own report, Bill, about the benefits on an outpatient basis not going to the providers themselves. I had two comments about that same thing.
The first is that, clearly, then, you are looking at incentives for the payers, because, under any scenario, they benefit. So incentives that don’t just look to the individual provider at the point of care or his office practice or the provider organization might be another issue to keep clearly on the table.
The other is just - this is more a small point. I know that the phrase Hill Burton(?) continues to crop up, and I have even seen it in, I think, the presentation that you shared with us, and think those - and, Gene, maybe you’ll remember this - but I haven’t been around the health policy trenches as long as my grey hair would look, but I have been told by those who fought those battles that you want to avoid that at all costs. Hill Burton was responsible for some of the worst things that happened to the American healthcare system and that the use of that as an analogy, even simply as a rhetorical analogy, is something to be avoided at all costs, and so I would put that on the table for those who may be more knowledgeable about the ugly, dark side of the Hill Burton Act, and maybe, John, you know that, but -
DR. LUMPKIN: Yes, well, actually, what I was just going to toss in in your comments about the incentives, the difficulty with the incentives - if we even know what to measure and can measure it - is that, at some point, for the payer, does the cost of the incentive initiative cost - in order to give out enough incentive to change the behavior - is that still going to be cost effective? And that is where it is a much more complex analysis, because if you determine what the individual incentives are and then you roll those up for the whole system, you may say that it is going to cost you more than doing nothing.
DR. STEINDEL: I think picking up on that a little bit, John, what we found at CDC, and I think what Ken had mentioned in a - conference call we were at, that they found at NIH - NCI - when they were rolling out systems, it is one thing to provide incentives, which is what we do when we give grants. We say, okay, here’s money. Do a standard, and we are going to pay for you to do a standard, and we did that our first couple of years, and we found out that the states were more than willing to take our money, and they were going to say, we are going to do standards, and we didn’t get standards. The incentives were there, but the tools weren’t there to do it.
And so, now, what we are starting to do is we are starting to say, okay, do standards. Well, if you have some people that can actually prove that they can do standards, we’ll give you money. If you don’t, we’ll provide you direct assistance to put that money in - to put the standards in place.
So I think what you need is the tools out there to augment the incentives. Just having the incentives out there themselves is not important.
The example that came out now, as Bill was pointing out, these vendors who go into hospitals and say, here, take it. You know, we’ll take the money back from what you save. That is really providing a tool and the incentive coming back. It is a similar type of strategy to what we are doing, and I think that is something that is important for this group to pick up on.
DR. LUMPKIN: And this is actually going to segue into the next item, which is standards and architecture, because what overlaps on incentives is how do you prove that they are actually doing it, and so as we think about architecture and we think about incentive, then we need to think about certification and other things of validating the fact that what they are doing actually meets some sort of reasonable standard.
So any comments on standards and architecture? I tried to sort of bridge into that to move the agenda.
MR. YASNOFF: Stan, I think that you have to admit that you are involved in this -
DR. HUFF: I do?
MR. YASNOFF: Stan is our co-lead in that area -
DR. HUFF: Yes, maybe I could start that off. In this area, Bob Greeness(?) -
DR. GREENBERG: You don’t have to recuse yourself. (Laughter).
DR. HUFF: No. Bob Greeness and I are the cochairs that have agreed to work as the task leaders, topic leaders in this area, and the things -
MR. BLAIR: Closer to the microphone.
DR. HUFF: I’ll just speak louder. Can you hear me now?
MR. BLAIR: I can hear you now, Stan. Thank you.
DR. HUFF: Bob Greeness and I have had a conference call and are getting organized in selecting the other experts, but maybe I can share the things that we talked about and then get some additional ideas here.
One of the things we talked about is we needed to work on process; that is, if you are adopting architecture, you are adopting standards, and, actually, in implementing, how does that happen? I mean, it’s one thing to have an HL7 standard or some other thing. We know how, maybe, to do the standards, but, in terms of architectures, we have - you know, in the two LHIIs that exist, you have very different models about how the data is put into repositories and how it is shared, and -
SPEAKER: You mean, the emerging -
DR. HUFF: Yes, the emerging - and so how do you put a process in place where that can be examined and find out what the best way to do this is, and talk to people about whether the incentives for a given architecture versus a different architecture - So trying to set up a process about how you adopt architectures.
But, then, the second thing is we could also work on what are the options for architectures, and look at Santa Barbara and look at Indianapolis, look at others that people have conjectured in terms of the kind of architectures.
A third topic was the special problems related to decision support and sharing decision support and actually being able to execute decision support within this framework. So sharing as well as execution and all of those issues.
Other ways that you can organize to implement the standards - I mean, there have been the possibilities of open-source consortiums to share software and to share implementations and applications. There could be tool kits. There could be other business models that we haven’t thought of, in terms of how you can share tools and architecture and those things.
So, I mean, those are some general things that we had talked about, and, then, you know, from the discussion so far today, I think - I gleaned that there are probably some important issues related to architecture at the boundaries of LHIIs to the national NHII.
It occurred to me that there are issues related to your strategy of exchanging. So we are creating a standard to exchange a whole EMR, and an alternative strategy is one where you would request parts of the record that you needed at the particular time that you are providing care, and there are pluses and minuses to those things. I see some problem with exchanging whole records in how you maintain that as new data comes in and all kinds of -
MR. YASNOFF: Actually, what we are contemplating is a standard for changing the whole record or any defined part.
DR. HUFF: Yes.
MR. YASNOFF: So I neglected to mention that. So the idea is -
DR. HUFF: And those are key and important, and then the next question is, though, as soon as new data comes in, what happens? And how do I know I am out of date, and how do I get - you know. Anyway, there are lots of fun things that -
Also, I think, in terms of architecture and other things that, again, it occurs to me that we ought to at least look at what is going on in the UK and the EU and other places about how they have architected their thing and whether they are doing it right, doing it wrong, what lessons they might have learned already about architecture, and then just the most recent comment, which was ways about certifying or validating whether things are good or bad or meeting the standards. So those are the issues that we have thought of so far.
MR. YASNOFF: Let me answer a question that hasn’t been asked, but, undoubtedly, is burning in everyone’s mind, which is why are the architecture and standards discussions combined into one group?
Sorry, Jeff, we dropped you.
And, again, it is an issue of - obviously, standards are crucially important, but another long series o meetings resulting in recommendations that we need standards didn’t seem to be very helpful. So by combining them, we certainly don’t need to minimize the importance of standards, and, actually, I think one of the things that I am hoping this group will produce are some recommendations regarding gaps that they see in standards development, and, in particular, for example, the need for a standard for computable guideline exchange. So that is why that was done. So before someone says, gee, this is a problem. I want the answer to that question.
MR. BLAIR: Bill, let me say that I very much support the idea of combining standards and architecture. I think that is a very appropriate thing to do at this time.
MR. YASNOFF: Thank you, Jeff.
DR. LUMPKIN: I think I would just want to add one term to that. It is the concept of being incrementable, that when we think about it, just as Bill discussed the standards for exchange of electronic health records, the standard needs to support being able to exchange a subset of that or the entire record, so that as the capability of the systems - the architecture, the new internet, all this stuff happens - that we have a standard that can be incrementally put in place, but, also, robust enough to support what we think ultimately we are going to be able to do.
MR. HOUSTON: Is the intent, with regards to standards, though, to defer like to NCVHS or somebody with regards to adoption of specific standards? Is that what you are really saying is that we are not going to delve into standards because we are already doing that?
MR. YASNOFF: No.
MR. HOUSTON: Okay.
MR. YASNOFF: No, the intent is to not have another long discussion that leads to a recommendation that we need to have standards, because we know we need to have standards. So the issue - the idea is to say, we know that standards work is going on. There could be recommendations saying we support that. We are concerned about it, but, in particular, the recommendations we are looking for are here, the things we see that are not going on in standards that we would like somebody to deal with.
MR. HOUSTON: I would think it would be of value - at least in order to settle this particular issue entirely - is to defer - and, again, I know what NCVHS is obviously doing with regards to providing official support for specific standards in adopting of specific standards in all these different recommendations that have come out of the standards subcommittee is maybe making some type of explicit recommendation that NHII is going to defer entirely to whoever in that regard.
MR. YASNOFF: Well, I don’t think it is a question of deferring, and, in fact, the way the meeting is structured, as you know, all the recommendations from the meeting are going to be presented to this group on the final day of the meeting, presumably for consideration and further action, but the activity of NCVHS is obviously very important and helpful in terms of standards.
On the other hand, NCVHS does not develop standards. Those are developed elsewhere, and while NCVHS is part of the process of identifying gaps, as we are thinking about the development of NHII, it is becoming apparent that there are additional gaps that have not previously been identified that need to be called to people’s attention.
MR. HOUSTON: Well, maybe I’m not articulating it clearly. I mean, NCVHS has made recommendations with regards to the adoption of specific standards, and I’m just wondering whether that is the way you settle - you avoid delving into the issue of why isn’t NHII recommending specific standards is to defer that point -
DR. LUMPKIN: Well, but what actually here Bill is suggesting - and I agree - is that when we adopted the 24 domains for CHI, a number of the domains said, well, we have maybe one standard. There’s some gaps. There are additional gaps, and that part of what we hope to come out of the conference will be saying, this is where there needs to be standard development work, and so as we put all these pieces together, the recommendations that come from here and other places, we may continue to make recommendations to HHS as a product of this workgroup and other - of the conference and other efforts, saying, you know, HHS, there are these gaps. We see the ball getting near the top of the hill, and it is going to start rolling down the hill, and if it is going to be able to continue the momentum, we need to really invest in the standard development process to make sure that there are standards available, when there is a demand for them.
MR. HOUSTON: Is there a fear that NHII, though, as it is going through that process ends up identifying or deciding it wants to adopt different standards than -
DR. COHN: John.
DR. LUMPKIN: Yes.
DR. COHN: This is Simon. Can I make a comment to John Paul?
DR. LUMPKIN: Yes.
DR. COHN: I think, first of all, he needs to realize this is a meeting, and, really, what we are talking about is an agenda for the meeting. So, actually, you know, should remember we, at our last session, had actually suggested a deemphasis on standards, because we thought that it had been sort of - I don’t think that there is really any major concern about where Bill is going with this one. I think it sounds like a very reasonable way of putting together an agenda for a set of breakout sessions at a major plenary session, a yearly meeting.
Can I ask Stan a question, though?
DR. HUFF: Sure.
DR. COHN: Okay. And I don’t mean to get off this particular issue, but I guess this one I am a lot less concerned about than many others.
Stan, you actually mentioned a variety of issues, many of which sounded like walking through marshmallow fields around architectures and standards and everything else.
Are you going to sort of have business cases or priorities help focus the discussion? I mean, of your discussions, the one that really seemed to stand out and maybe would drive a lot of the issues has to do with the decision-support piece and really would seem to me that, if, indeed, we consider a decision support at the point of care to be a high priority issue, begins to order a lot of the architectural discussions.
DR. HUFF: I think that is a good input, and, you know -
DR. COHN: I don’t mean to interrupt you, but - I think we are all comfortable with a meeting where standards are not terribly emphasized.
MR. YASNOFF: Let me comment on that specifically. I think that if, at this meeting, we get to the point where there’s a recommendation that there needs to be work focused on developing a standard for a guideline exchange and - that would be sufficient.
The intent of this meeting is not to figure out what that standard should be, but, perhaps, there may be some recommendations for an ongoing process. We have already identified this as an important gap, but it would be nice if the stakeholders agree, and, of course, if the stakeholders say it is not an important gap, we’ll stop working on it, and we have some ideas about process as to how to pursue this, but I think this is an important area where I am very anxious to hear the stakeholders weigh in, because this is - I perceive this as a serious productivity impediment in the implementation of electronic health record systems and in deriving the benefits we all want.
If you have to, at each site where you implement a system, in effect, take written material from the literature, translate that into algorithms and essentially carve it in stone and no one ever gets the benefit of the work you have just done again, it seems to me we have imposed a work burden which is intolerable.
DR. COHN: Bill, this is Simon.
I certainly agree with you, Bill. I don’t know whether a standard for guideline exchange is necessarily the solution. I mean, there’s the issue there about how we make good decision-support rules - but, obviously, what you are describing is one particular solution of what might be many.
MR. YASNOFF: Well, this is why we want to ask the stakeholders.
DR. LUMPKIN: Right.
DR. COHN: Absolutely.
DR. LUMPKIN: Yes, I think we are getting into the conversation for the workgroup, but I -
MS. DEERING: Can I make a 30,000-foot-level comment on this, which is that unless I am mistaken and/or deaf, virtually the entire discussion in the data standards world is around clinical data standards with a little bit around public health - standards for public health data - a lot, actually, around the public health exchange, and what I think would be interesting, because these are questions that are more at the 30,000-foot level, is what are the categories of needs to support the development of the personal health dimension and to support other kinds of exchanges between the dimensions that are not purely related to the precise field of clinical data exchange? I mean, I don’t know what they are, but it is a broader and more preliminary question that a lot of good minds might have some ideas about.
DR. STEINDEL: Mary Jo, picking up on that, as I think one of the primary things that I see from this group is identifying the gaps in the standards, and I think that is a gap in the standards, as well as like decision support.
I think a key thing is like at recent discussions, the last meeting, all the work that the NCVHS has done through the years and everything, everybody accepts the idea there should be a standardized way of exchanging information in the form of a message. There should be standardized terminologies that people are using. What we are hoping to move in this session is one step beyond that.
DR. STEUERLE: I just hope that when you have the stakeholders on this architectural standards that you can really get them to pinpoint where they are liable to serve as obstacles. I mean, there is no standard, whether it’s meters versus speed - standards are IRS trying to get electronic filing and what they are going to do when there are not a lot of stakeholder things, don’t do it that way, because you are going to hurt my business, and I don’t think we are going to resolve that, but I would really like to have that better identified for me, just - you know - at what points are we really going to hit those conflicts?
DR. HUFF: Yes, I think that is one of the parts that I didn’t express very well, when I thought the issue was when we were talking about architectures and incentives, but I think that is one of the real questions is if I am one of the commercial vendors - you know, Sir(?), McKesson(?), IVX, all those guys - I think they have to be asking how do we play in this game? How do we fit into this architecture? You know, is there a new business opportunity for us in supplying these repositories or whatever the shared part of this is or is there somebody else going to do that and we are just the gateway for that?
I mean, I think those are all really - those are some of the really important - I mean, as I look at Intermountain Healthcare and this, I mean, we look at it and say, what is the business proposition that we would do? I mean, is all the informatics now going to be done in some other institution? Do I need to buff up my resume because IHC won’t be in the information business anymore? It’ll be somewhere else. I think there are real issues - and the vendors have to think about it in the same way.
DR. LUMPKIN: Let’s move on to confidentiality. Are there any items we want to toss into the mix there? We don’t have to.
MR. YASNOFF: On confidentiality?
DR. LUMPKIN: Yes.
MR. YASNOFF: I think John Paul - we should just drop that -
DR. LUMPKIN: Yes. (Laughter).
Okay. I think we have already talked about measuring, measurement and metrics.
Population health. Anything to toss in there?
MR. YASNOFF: We are in favor of it.
DR. LUMPKIN: Who is taking a lead on that? Or they have been identified?
DR. GREENBERG: Andrew Ballis(?).
MR. YASNOFF: Andy Ballis and -
SPEAKER: (Off mike).
MR. YASNOFF: No, we did. Andy Ballis and Scott Williams.
DR. GREENBERG: Who is the other one?
MR. YASNOFF: Andy Ballis is the Dean of the School of Public Health, St. Louis. Scott Williams is the Director of the Utah Health Department.
DR. LUMPKIN: Good. Good mix. I was going to yell at you if you didn’t have a state person. (Laughter).
Okay.
MR. YASNOFF: That’s why I told Scott Williams he had to do this, because, otherwise, John Lumpkin is going to yell at me.
DR. LUMPKIN: (Laughter).
MR. YASNOFF: That convinced him.
DR. LUMPKIN: Clinical research?
MS. RYPEN: We have one, but we -
DR. LUMPKIN: Oh, Marjorie wants to go back to population health. Sorry.
DR. GREENBERG: I wasn’t quick enough here.
I was just thinking that - I mean, we obviously have a population health subcommittee, though, I don’t know that there’s anyone here around the table - any of the members of this workgroup who are on that.
SPEAKER: (Off mike).
DR. LUMPKIN: Yes, but he’s not here.
SPEAKER: But I’m saying -
DR. GREENBERG: Well, yes, it’s true, but he isn’t here.
But if there’s some way to engage that subcommittee, which is actually a - the quality workgroup is part of that subcommittee. So it’s a natural link also, then we would be happy to try to facilitate that, but -
MR. YASNOFF: Especially if we can get some volunteers to help. (Laughter).
MS. DEERING: I was going to suggest former NCVHSers, certainly Dan Freedman(?) could be very helpful here or Barbara Starfield(?), and I know that Dan probably would be delighted to play a continuing role in this field, which he is in his new life.
DR. LUMPKIN: Okay. Back to clinical research.
I wanted to perhaps toss out a name that the Institute of Medicine has a clinical research roundtable. Alex Omaya(?) is the person who heads that up from IOM. That might be an important -
MR. BLAIR: Are you able to hear me?
DR. LUMPKIN: Yes.
MR. BLAIR: I always ask, because I can’t see the button to tell whether my mute is on or not.
DR. LUMPKIN: Okay.
MR. BLAIR: One of the things that I would like to suggest - and I’ve done this before, but I want to reiterate it, and some of it is a matter of how we organize our lists, how we organize our topics, and it’s a sensitivity.
I think that we ought to have things related to consumer health and privacy at the top of our lists, and that when we list breakout sessions and when we list the topics, that those become at the top.
I have become increasingly sensitive to the intensity of the parts of the public that feel threatened by the National Health Information Infrastructure. Obviously, I don’t share that threat at all. I see it very differently, but there’s so much good work that we are doing, I don’t want to see it derailed by this idea that that is not a major priority, that that is not - that we are not sensitive and supportive of privacy and the use of healthcare information for consumer purposes.
MS. DEERING: As a sort of a followup to that, it occurred to me that I think we also talked - Jeff, you might have raised it - about making sure that, wherever appropriate, that we have consumers and patients represented in breakout groups, other than just the personal health dimension.
It occurs to me that the clinical research area is really perhaps the next in line. I wonder if we could turn to NIH to help us identify any one who could help represent the patient perspective in clinical research within this workgroup.
SPEAKER: We have any number of groups -
MS. DEERING: Absolutely. I think that could be really helpful.
SPEAKER: Right.
MS. DEERING: Again, it makes that statement that this is a value - we are not just trying to improve research for the people who get more grant funds, but, actually, the ultimate beneficiary is the patient.
MR. HOUSTON: How are we eliciting people to be involved in the personal health workgroup?
MS. RYPEN: I think he said how are we -
MR. HOUSTON: How are we getting people to participate in the personal health breakout -
MS. RYPEN: The co-leads identify and recommend who they think would be part of their working activity.
MR. YASNOFF: Are you talking about the leads -
MR. HOUSTON: No, I’m talking about -
MR. YASNOFF: - getting people to the meeting?
MR. HOUSTON: Getting people to the meeting, and, obviously, you know, if the title says consumers and patients, is there any type of outreach that’s -
MS. RYPEN: Yes, yes, AARP. Yes, we have some, but any recommendations that you have would be greatly -
MR. HOUSTON: Because I think that sort of applies to, I think, what Mary Jo was saying which is how do you get consumer participation in everything from research to confidentiality to some of these other -
MR. BLAIR: Well, I believe there are privacy advocacy groups in health care, and I think we should reach out to make sure that they know they are welcome.
MS. RYPEN: Yes, and we are trying to – we are aggressively doing that, but we always are - sometimes miss opportunities. So if anyone has any ideas of organizations or individuals, please - to us.
MR. YASNOFF: Particularly in the consumer area, you know, any suggestions would be very, very welcome, because we would - we want to invite consumers to come to this meeting, but we want to do it through some kind of organizational channels.
MS. DEERING: Well, I think that you might, then, reach out to the executive directors and presidents of all the major constituency groups - the Heart Association, the Cancer Association, the Diabetes Association - especially those for chronic diseases - the National Caregivers Alliance. In fact, come to think of it, you haven’t mentioned the word caregivers here at all and I am just going to add it to the personal health dimension right there - inviting consumers, patients and caregivers - because this is a huge issue.
Within the past week, I think, the figures came out about the number of Americans that are, in fact, giving care directly. I know the VA is looking at caregivers as a specific population, and they are quite well organized, and there’s funds out there that perhaps need to be brought into alignment with NHII issues. So I suggest that, too.
DR. STEUERLE: Are you thinking of approaching groups like Consumers Union? I mean, I’m not sure - just advocates for -
MS. RYPEN(?): Yes, we actually are.
MS. DEERING: Consumers Union? There’s something called Consumer Web Watch, by the way -
DR. STEUERLE: I’m trying to think of groups that might at least pretend to represent a broad swath of the population in our particular areas.
MR. YASNOFF: Yes - at our requirements meeting we did have a representative of the Consumer Federation, and we have been regularly having representation from AARP, so - but, you know, the more the better.
I think that the last thing we want is for some important group to feel slighted because we haven’t reached out to them.
DR. STEUERLE: I’m just more worried about getting a balance and not having just the people who have some complaint about something possibly going wrong - people who actually have a stake in seeing -
MR. YASNOFF: Totally agree.
MS. DEERING: Do you have a representative from AARP?
MR. YASNOFF: Oh, yes. Yes, they endorse the meeting.
MR. HOUSTON: Back to Mary Jo’s point, you know, there’s always conference endorsers that include - you know - you’re talking about caregivers and otherwise that - why don’t we try to leverage them also, because you have the American Association of College Nursing and -
MR. YASNOFF: All - have already agreed to -
MR. HOUSTON: Okay.
MR. YASNOFF: - distribute information about the meeting to their members. So they’re – presumably, they are already doing that.
DR. GREENBERG: We have any consumer groups who are -
MR. YASNOFF: But we are looking for even more people.
MR. HOUSTON: Lean on them for some of these representations - when I heard caregivers, you know, you’ve gotta - I think you can lean more heavily on these endorsers than - you know - others to even push - you know - participate more.
MR. YASNOFF: Absolutely.
DR. STEUERLE: If you get a weak sign-up for any of these sessions, are you thinking of possibly merging them? Is that -
MR. YASNOFF: I’m sorry?
DR. STEUERLE: I’m sorry. If you get a very low level of sign-up for any of these particular sessions are you thinking of possibly merging it or are you just -
MR. YASNOFF: Yes, we did that last year. If it’s a small number of people, instead of having two groups, we’ll have one, and if it is a large number of people, we may - in theory, might have to split it into more groups, although that will be logistically challenging.
DR. LUMPKIN: At this point, why don’t we take a five-minute break?
(Break: 10:50 a.m.)
(Resume: 11:00 a.m.)
Agenda Item: Update on Connecting for Health Initiative
DR. LUMPKIN: I assume - but I’m not sure that everybody knows Carol Diamond who is with the Markle Foundation, one of those foundations in New York City.
MS. DIAMOND: One of those.
DR. LUMPKIN: One of those.
SPEAKER: Do they look down on New Jersey?
DR. LUMPKIN: You know -
MS. DIAMOND: Yes. (Laughter).
DR. LUMPKIN: Okay. Because we have a second, I just have to make this comment about Hoboken and New York City - (laughter) - and this is something I learned when I went to Tupelo, Mississippi. So this is like how I had to go to Tupelo to learn this.
Everybody in New York City looks down on people who live in Hoboken, but the response is is that when you live in Hoboken, you look out and you see Manhattan, and when you live in Manhattan, you look out and see Hoboken. (Laughter). So who’s so smart?
Anyway -
SPEAKER: Wasn’t - from Hoboken?
DR. LUMPKIN: Yes, he was.
DR. GREENBERG: Actually, Hoboken has gotten pretty good.
DR. LUMPKIN: It is. It’s getting to be quite a - because you can look out your window and see Manhattan, without having to live there. (Laughter).
Anyway, Carol, as part of her activities at Markle, initiated the first round of Connecting for Health, and is now actively engaged in the leadership of the second round of Connecting for Health, which is moving to - trying to move the agenda forward and develop as one of their activities a road map - a short-term roadmap - that actually in many ways is complimentary to our attempts on our workgroup that is developing a long-term roadmap.
So with that -
MS. DIAMOND: Well, thank you for having me here. I - Oh, louder. Okay. Oh, boy. It’s hard for me.
DR. GREENBERG: A quiet New Yorker?
MS. DIAMOND: Imagine that.
I feel today I have a lot to say, but I have a little to say. A lot of what I am going to present today is work in progress, but there is a lot of material to go through, and I made the decision to present more work in progress than we normally would, given where we are in the process, because, as I understand the time line of the committee, this was a key opportunity when I laid our time line over it. I think by the time there might be another opportunity would be very far into our process.
So I may say some things or present some things today which are unpopular with this committee. They may also be unpopular with my own committee, and I want to make that clear, but I wanted to give you a sense of where the work is, and we do things in Connecting for Health very much through workgroups, and we sort of bubble it up and vet it within broader input and bring it to a leadership group, and so we are in the process of that, and I just want to emphasize that none of this is official recommendations of Connecting for Health, but just to give you a taste of where the work is and where we think it is headed. So I say that as a disclaimer.
Those of you who are familiar with the first phase of Connecting for Health know our purpose, which is to motivate an interconnected health information infrastructure, catalyze change.
The assumptions we have going into this, which aligns with the conversation this morning, is our assumption is the network is worthwhile, that it provides value and the future base is for high-quality care.
Our view is it can only be accomplished by what we have called dynamic connectivity, which is a term we coined to talk about information moving when it needs to move, where it needs to move in a private and secure manner.
And achieving this goal requires public and private-sector collaboration. That is a premise of the initiative, and it is a premise of the participants. So everything that we do, every committee we organize, every leadership group we put together always involves some combination of public and private-sector stakeholders.
DR. LUMPKIN: That sounds like Mark and Clay.
MR. OVERHAGE: Mark is here.
DR. LUMPKIN: Okay.
MS. DIAMOND: I just got started.
MR. OVERHAGE: Yes, thank you.
DR. LUMPKIN: Can you introduce yourself, Mark?
MR. OVERHAGE: Hello. My name is Mark Overhage. I am faculty at the Indiana University School of Medicine and have been working on the Connecting for Health Project since it’s first days.
DR. LUMPKIN: Great. Welcome.
MS. DIAMOND: Our most basic agenda is to improve the healthcare system for patients and consumers through connectivity and information sharing. Those are the two parallel goals.
And just to remind you of Phase One - I won’t spend a lot of time on this here. We have presented to the committee in the past on consensus around an initial set of data standards a year-and-a-half ago. We identified privacy and security practices for electronic information exchange. We defined the high-level characteristics or attributes of - the personal health record, and there was a call to action from the Connecting for Health Steering Group regarding moving toward an interoperable infrastructure.
We completed this phase in June, and many of the people in this room have been involved in Connecting for Health, and many have participated in the committee. So I won’t belabor this, but between June of last year and January of this year, we were in sort of the development phase for this next phase of work.
We have, essentially, two key components of the work this time. One key component is what we are calling the incremental roadmap or the shared path.
This came about, I should say, from a lot of feedback that we were hearing from the Steering Group, and for those of you who don’t know who is on the Steering Group, it is on our website. I did not bring lists of people today. It’s on the Connecting for Health Website.
But we were hearing a lot of feedback from the leadership within healthcare, all stakeholders, that it feels like there is a lot of activity going on in this area in IT and healthcare, but we are not sure where it is all going, and, actually, I think it was John at our last meeting coined the term Brownie in Motion. You know, somebody turned the Bunsen burner on and the molecules are jumping around. We are not sure where it is leading, and people are being pulled to many of the same meetings, the same initiatives, the same conversations happening in multiple places.
So there was a lot of value placed on trying to identify - I really want to shift from the conversation we had this morning - which was a long-term view - to a short-term view, which is what we are about, I think, in this incremental roadmap, but to identify, at least in the near term, are there some things, even if it is a handful of things, that public and private stakeholders can get together and agree needed to be done.
The second piece of the work bubbled up from the work we did in the first time, which was, in addition to those issues, there were some issues that people raised that still were big problems or barriers or impediments to the information infrastructure and needed to be addressed. So we put together some new workgroups.
The first is looking at the business and organizational aspects of health information exchange. This workgroup is chaired by David Brailer(?), and, again, all the members of these groups and their charge is on the website. I am not going to go into much detail on this today.
The second is looking at policies of information sharing between doctors and patients, and David Lansky is chairing this.
When we did our initial PHR work in the first phase, we learned that there was a lot of both confusion and lack of clarity around what can you share with patients? How do you share it? What are the policies that are sort of implicated in that sharing? What are the privacy issues? The security issues? You know, how do you sort through that? And that workgroup was wholly focused on that.
The third is the technical and policy aspects of what we are calling accurately linking health information.
And the fourth is some of the additional technical aspects of health information exchange that go above and beyond the initial set of standards, but were identified in earlier work as areas that needed to be addressed, and I am going to go into more detail on that.
The roadmap process is essentially a five-step plan, and the bottom of the slide gives you the time line which punctuates my earlier comments, which is that we are very early in this process.
We really started in February to do what we call the first phase of input and outreach, and that started with a series of interviews - informational interviews that were designed to create a foundation for focus. The roadmap is really something that the steering group will put together, and the first step of trying to do that was asking them what they thought the near-term issues are or areas of focus.
The second is to try to bring a broad set of leadership within healthcare together to establish at least a shared view of those key opportunities. So it’s a second step in this process, and that is the phase we are in now, and I speak to you today in advance of our steering group meeting which is in two weeks. So a lot of what I am going to describe is not necessarily yet the shared view, and I feel the need to emphasize that.
But what you see here on this continuum is that we are going to move quickly into trying to define some specific actions over the next couple of months coming out of this early work, and then do outreach and do our usual sort of - you know, trying to solicit individual commitments in Step 4, and getting the steering group to really define what they think the actions are to get these milestones accomplished.
The interview process was conducted by me, primarily. I spent at least an hour with every member of the steering group, and I asked a series of 10 questions that were distributed ahead of time. I want to emphasize this was not a scientific poll. It was done to organize the work and to figure out where people thought the priorities were. So it was wandering and probing.
There were over 60 leaders interviewed. There were also interviews conducted for the public sector by Kelly Cronin, which led up to the leadership retreat that happened a couple of weeks ago that Bill referenced earlier, and the assimilation of these interviews has formed the foundation, at least for the beginning of this work.
The ten questions are in the next three slides. I won’t go through them, but feel free to peruse them.
I want to emphasize that all these questions focus on what do you think the near-term opportunities are? And so everything that I present bifurcates on, yes, it is all important, but what do you think - if you had to think one to three years, what are the most important areas for focus?
So the assimilation resulted in what I have called Forks in the Road, and that is, I guess, a metaphor for saying that there is a divergence of views about what near-term priorities are, at least within our steering group and within our leadership group.
There were seven areas identified. I am not going to go into all of them today, although I am sure that there would be interests in many of these.
In the seven areas - the first one stemmed from the question do you think having the National Health Information Infrastructure - do you think creating that is an incremental process? That was one of the - I think it was the second question that I asked, and I was forced to ask that question. I actually didn’t think it was necessary. I thought everybody would say, yes, of course it is incremental, but, in fact, there is a divergence of views, and I’ll elaborate on all of these.
The second area was funding. There wasn’t really anyone that I talked to who didn’t talk about either the misalignment of incentives or the need for up-front incentives to get this going.
The third was data standards.
The fourth is something I called incremental applications, which is the difference between focusing on a full EHR and some incremental application or some subset application that might be more readily doable in the near term.
The fifth was already mentioned here today, and I am not going to go into it, the IT exemption for Stark.
The sixth was this problem of linking health information or the identifier issue.
And the seventh was federal leadership.
The two items in grey, I am not going to talk at all about, but I’ll elaborate on some of the other areas.
As I said, this incremental infrastructure emerged from asking people if people believed the path was going to be incremental, and the bifurcation is a yes/no bifurcation. The yes camp, in this group, bifurcates again. So, yes, it is incremental and then there is a group that says and it is all going to happen through local health information infrastructures. That is how it should start. That is where we should focus. That is where we should invest our energies.
There is another camp that thinks it is incremental that says - and, again, I am speaking not for my own opinions, but just trying to give you a sense of the feedback - another camp that thinks healthcare has a long history of doing local demonstration projects. We have a long history of not connecting things and we think they are going to connect. We have a long history of not having sustainable models, and I just don’t think that that model, in and of itself, is going to result in sort of the bigger or broader infrastructure that exists. We need some national network. Some parameter that gets defined that gets focused on the near term to make sure that those things happen in a way that ultimately does work.
The no camp, interestingly, bifurcates, too, and so ones you might call predictable bifurcation here is - the camp says it is not incremental, and there is some big initiative or big event that could be funded if people really wanted this to happen, if people were serious about getting this to happen, there would be this big initiative that got funded. It is not an incremental pathway. If we were really serious about this, this is what we would do.
The other side of the no - and, again, there are 1,000 points in between here. Maybe 1,000 is an exaggeration, but this is a spectrum of views, and I mean to give you the polls only.
The other side of this is a group of people who feel, you know, health care is too vested in the status quo, too comfortable. The system is doing what the system is designed to deliver, and it is not going to happen unless there’s some consumer-based demand, some disruptive strategy that occurs, and there’s lots of ideas about this from having new companies that collect information for patients and, in effect, force the standard on the system. You know, lots of different ideas here, but thought it was an important point of view to highlight.
As I said, no one interviewed didn’t highlight the issue of funding in some way, either the realignment of incentives or new incentives, and the bifurcations do exist here, too.
While everybody who said incentives were important - you know, you could say that is a consensus - there is a bifurcation about what to incent, and we had this discussion earlier. Are you funding the tool or are you funding the outcome? And all of the sort of - the continuum of issues in between those were raised.
On the other side, in addition to sort of incentives, there is a camp that focused on the need for up-front capital. At this stage of infrastructure development, there is a need to provide some up-front capital, that incentives aren’t enough, and this falls into loans and grants are group purchasing, but, in effect, reducing the cost of entry.
Standards. Everyone identified the importance of standards for information exchange, and I think it is important to say that a divergence arises when you ask people what is the near-term focus? What needs to be focused on in the near term?
So there is a yes camp here, and the yes camp says, yes, standards should be focused on in the near term, but there is a bifurcation. There is one poll that says we need to focus on this full-set issue. We have missing pieces. You know, we talked about some of these this morning. We have some areas that need to be developed. We should really finish all 20-some-odd areas, get all the standards done, harmonize them and get that work prioritized.
There is another camp here that says, yes, focus on the standards, but let’s focus on the ready set and get those implemented, because we are still not satisfied with the rate of uptake implementation and the rate of knowing that people are using the same standards the same way, even where we have a standard.
And both of these groups raised the issue of compliance. Ed Hammond corrects me every time I say compliance, and he says, no, it is conformance or compliance or - the issue, I think, is a market-based one, at least from the interviews that I did. The question is, if you are buying a system and the system is supposed to be HL7- or LOINK(?)- or what have you compliant, what does that mean and how do you know that it is really compliant?
The no camp here says, you know, standards are going to take a long time, and I think someone alluded to the sentiment out there that I would say is growing. Standards are going to take a long time. Progress has been slow. We need to jump on the ability to move information, however the information moves, quickly, and there is a camp here that focuses on things like let’s standardize some documents and content and just get it out there and make sure people are using it and at least information will be shared, and there is a camp here that focuses only on the data. So don’t even worry about the underlying standards, but let’s get some of these national lab data sources moving, so that people can start to benefit from it, and, again, this is a spectrum of views that are out there. We have all heard them, I know, from all the meetings you have gone to, but I think it does reflect in the way people are thinking about the near term, the different kinds of views that are out there.
The applications are also - also entertain a divergence, and, here, it’s - again - what to focus on in the near term.
There is a camp that says incremental applications are a near-term focus, and that is where you should focus. The full EHR is not necessarily something everybody is ready to entertain, and we’ve got some buses that have left the station, like e-prescribing and some other sort of e-tools that are out there that we should make sure we leverage as opportunities to lay the NHII infrastructure.
There is another camp that says, no, incremental applications are not the way to go, and we’ve got to focus on the full electronic health record. That is a starting place. Don’t worry about connectivity or other issues yet. Let’s get everybody using the tool.
In this no camp, there is another bifurcation which is there’s a group that feels we should not only focus on the EHR completely in the near term, but that if there was some public model available and distributed, people would use it.
Linking information. This is an area, as I mentioned before, we have a whole workgroup on, but there was feedback about the ID. There’s a yes camp and a no camp, as you might imagine, and each of these views is represented, I think, in a variety of stakeholders, and I’ll go into more detail on this in a minute.
So I am going to give you, now, moving from forks in the road to a progress report about where we think we are going to come out on a shared path on some of these issues, and I am only going to focus on four of the issues that I have mentioned.
I also want to emphasize that the whole intent of this exercise was to start from the divergence, that we wanted to understand that divergence, and that pretending that it is not there, that people don’t have different views about what needs to be done in the near term is not acknowledging all the Brownie in Motion that is out there, because there is a lot.
But we do want to get to a place of agreement and a place where people can agree on the near-term steps. So one of the things we did was we held a leadership retreat a couple of weeks ago, and there really was unprecedented leadership from all stakeholder groups. As Bill mentioned earlier, Mark McLellan was there, but so were many other public-sector leaders and private sector leaders, and this was our first pass at trying to create some shared path.
In addition to the leadership retreat - and I am going to go through some of the very high-level recommendations, we did some workgroups leading up to the leadership retreat where much more specific views and recommendations have started to bubble up, and I am going to share those with you as well.
So, first, to the leadership retreat. On the infrastructure and architecture, I think the key ah ha that came out of our retreat is that it is not an either/or. It is not all LHII or all NHII, that it doesn’t all happen locally and it doesn’t all happen nationally, and, in fact, people felt neither approach can succeed without the other, and that there was a need to develop - and I heard this a lot in the interviews that I did - some common framework to support locally-built networks. A lot of the conversation this morning resonates that, which is how do we ensure that the LHIIs ultimately do end up talking to each other. That is really, I think, on everybody’s mind.
Leading up to this, we did have a workgroup. We called it the Technical Expert Panel. Mark Overhage was kind enough to be on the phone to help me go through this section, and there were others involved in this meeting. We were very fortunate to be able to lock these guys in a room for several days and try to hammer through some issues, and what I’ll present today are high-level summaries of things. They don’t represent, necessarily, full-blown consensus and they don’t represent recommendations, but I do think they are early breakthroughs that we want to at least pressure test more broadly.
Architecture. So, again, here, same output from this group. It is not an either/or path, and there was a lot of consistent belief that there is a need to have some common framework. This group actually went farther in defining it, and I am going to share some of those early attributes with you.
First principles, again, are that it can support both local infrastructures and connecting local infrastructures, that it also supports the needs of what we term secondary users, like research, public health, quality improvement, patient safety, so all the derivative users of the infrastructure, and that there is a wealth of clinical traffic really waiting to traverse this highway, that if this were available it would really enable a lot of pent-up demand to be realized.
There were five technical specifications of the common framework. Mark, do you want to go through these? Do you have your slides?
MR. OVERAGE: Sure.
MS. DIAMOND: Okay.
MR. OVERAGE: And these won’t be surprising to anybody, but one of the points here was that everybody thought that there needed to be a common, well-established infrastructure underlying framework for communications and that that had to be ubiquitous, obviously built upon the internet for communication, had to have agreed-to and consistent security standards that addressed the usual issues of confidentiality, authentication, integrity and non-repudiation, and then an authorization infrastructure to deal with who is allowed to do what, and then the notion that participants in this framework, things that connected this will have a minimum level of system functionality in terms of response time, in terms of longevity or retention times of data and things of that nature, and then, obviously, needs to be built upon messaging standards, leveraging the existing standards with common connectivity parameters in order to facilitate the communications.
No real surprises there, other than that one key step, if you will, is that having this agreed-to secure communication authentication infrastructure everybody thought was a huge leap forward in building these.
You want to pick up from there, Carol, or -
MS. DIAMOND: Sure.
The group talked - and just to backtrack a little bit. I think Mark is right. I think the big common revelation for this group or its point of agreement was that having a security layer was a very important attribute for moving forward.
The policy attributes of the framework, people felt strongly, needed to be voluntary, that it needed to be built on the premise of patient control and authorization, and that it provided local data exchange for primary users and time and efficiency improvements for secondary users, meaning if it created additional burdens for secondary users, it wouldn’t serve all its needs.
Some of the architecture considerations that the group has put forth are:
That a decentralized federated architecture was desirable with permanent data residing in local participants’ data stores.
That, fundamentally, the data exchange contain directories, permissions, authorization tables, interface engines, but not persistent data stores, although the group hasn’t defined persistent or non-persistent yet, and that is one of the areas we’ve got to follow up on.
That interchanging with the exchange layer was done through SLAs that would also guarantee, as Mark was alluding to before, the length of time the data would be available and the response time for requests.
That data needed to reside with the provider who had the primary relationship with the patient.
That it included a permissions and authority database from patients, and if you look at some of the LHIIs, this is very much a part of the infrastructure.
And that transparency and audit are necessary functions of the layer.
Mark, is there anything you want to add to that?
MR. OVERAGE: No, I think you covered it, especially given the time.
MS. DIAMOND: Okay. Essentially, the beneficiaries of the infrastructure include everyone who uses it. Primarily, here, the providers who are generating and accessing data.
The group emphasized that it was important that the infrastructure support a full continuum of functionality. So whether you had a full EHR with all the bells and whistles or you could only access the infrastructure through a portal to retrieve information, the system had to accommodate the full spectrum of users.
That there were what the group called service providers who are, essentially, mini-users. They generate the data. They are not necessarily looking at it, but there were anonymized data consumers to meet sort of the anonymized data needs.
Decision support systems would also be beneficiaries of this, and that for patients, there was an opportunity to incorporate their view here through a thin browser or longitudinal data store, but that this was clearly viewed as part of one of the beneficiaries of the infrastructure.
There are lots of open issues, and, as I said, this is - we are very early in the process, but we do want to drill down on some of these - and I said pressure test them, because I think we need to do that.
The issue of SLAs is a big one and how would that work and how would - you know, thinking about the different kinds of providers, the rural, the - all the different issues to deal with.
Whether or not it includes administrative data, a strong feeling about privacy policies that this infrastructure requires and would need to have some view of privacy policies that needs to be articulated.
That policies need to be addressed that allow patients to both preclude the collection and enable the transmission of information, and, again, there are no answers for these, but these are questions.
The issue of persistence or is there any persistence or data storage, what data? What is the appropriate data? How do you integrate fragile data? This was alluded to earlier in terms of updates and disambiguation, especially if you are thinking about things like full record or problem lists or medication lists. You know, how do you deal with those kinds of things?
And then the issue of population data bases and how to address that and who addresses it.
Moving to standards and incremental applications, the leadership retreat and some other groups that we have convened are saying that there is a need to have sort of a standards roadmap that includes time lines, prioritization, deliberables and coordination, that people don’t have a full sense of how this will all happen, and I think the work that we did with the technical group also is sort of pushing us in that direction.
And I think the groups all feel that any incremental approach can’t be a dead end, that if things are a dead end, we have missed a big opportunity, even if it feels like we have done something in the near term.
So on applications, first principles are that we need to balance complexity and speed, that both the full EMR and partial solutions are necessary. I mean, there is a whole spectrum of users and systems and people out there. There is no point in thinking this is a single solution, that all approaches work, as long as we don’t create dead ends, and that the fastest incremental application is a huge motivator, so where there is an incremental application that is out ahead, that is the train we should be thinking about anyway for standards and for the infrastructure.
Dead ends - and I have referenced this a couple of times. There are two requirements that qualify something as not being a dead end, and it is a first step to the EHR, if it has a pathway to added functionality. If it doesn’t have a pathway to added functionality, then it is viewed as a dead end.
And the second is that it has connectivity to health information exchange or complies with the common framework standards. In other words, it’s got to have the messaging component as well.
Incremental applications, I think, were viewed by the group as exchange transactions or use cases, and a whole myriad of near-term opportunities were identified. I have had e-prescribing up here a couple of times, but there are a whole myriad of applications that are out there, and I was trying to allude to this in some of my earlier comments, that all of these - you know, where we can, we should view these as helping to lay the groundwork for the infrastructure.
I’ve said this already, but I think the incremental application with the fastest implementation need to take into consideration both the content and the exchange standards if it really is going to be a segue to some broader infrastructure, and I think that is something where we will be able to get a lot of consensus and generate some recommendations.
On standards, I think the group felt we need to harness the growing demand for exchanging information, so leverage the existing standards and don’t hold up those efforts as we sort of go through the LHII and other funding initiatives.
Align new standards development efforts with use cases and user demand. In other words, let’s prioritize around some of these quick incremental applications, so that at least when they emerge and they are there, they don’t happen without the standards, that the standards are there to support theme where we know they are going to be out there.
And then there has to be a mechanism for standards conformance and compliance testing that results in some form of certification, that without that, saying something is standards compliant doesn’t really provide people with value along this trajectory.
Clay, are you on the phone?
MR. SHERKEE: Yes.
MS. DIAMOND: Okay. We have a whole workgroup focused on this issue of linking health information, and I thought it was important to give you a sense of where they are. Clay Sherkee(?) is on the phone. Clay is the chair of the workgroup. He is a professor at NYU, but also a very well-known speaker and writer on peer-to-peer architectures and a myriad of other technical and social issues.
There essentially has emerged an early set of issues that this group is viewing as a starting point, just even from their first meeting, and, again, I won’t go through all the people on this workgroup, but it is a fabulous, unbelievable, actually, group of folks who come from not only healthcare, but other industries, and that has really been our first experimentation of taking healthcare folks and non-healthcare folks and mixing them together to try to deal with some of these problems, and it has really been a very important lesson for us, because I think it has stimulated new thinking and different thinking, and I think Clay would be the first to admit that he is not a healthcare person as chairing the group, and so it really has allowed us to emphasize the learnings from other industries and other places where this issue has come up.
Clay, do you have the slides in front of you or do you want me to go through them?
MR. SHERKEE: Sure, or, I mean, however you want to do it.
MS. DIAMOND: Go ahead. Why don’t you go through them -
MR. SHERKEE Okay. Hang on a sec.
So I didn’t open them up because I thought you - why don’t you do the bullet points and I’ll -
MS. DIAMOND: Okay. Sure. Sure.
MR. SHERKEE: Sorry about that.
MS. DIAMOND: The first principle is that any system that improves the linking of information needs to be accurate, secure and responsive, and that the system essentially has these four additional parameters, and, again, this is early sort of group consensus, but we are very early in the process.
The group is feeling that it should be a decentralized system and that it needs to be federated, some organizational structure that provides a shared policy framework for safe and appropriate data sharing needs to be a part of this.
MR. SHERKEE: And, in fact, Carol, I’ll even say that maybe a little bit more strongly.
MS. DIAMOND: Sure.
MR. SHERKEE: Echoing some of the stuff you were talking about earlier, I think that the push towards decentralization comes from a sense that since the U.S. healthcare system has so many different players and is arranged in so many different ways, it will, of necessity, be decentralized, that we are not going to replace the current system with a single centralized system overnight, and that, as a result of decentralization, we need some organizational structure that looks like federation, so that participants in the system can do things like sign contracts with one another that guarantee security of data at remote sites, some of the things that Mark was talking about earlier. So, in a way, the pressure towards federation comes form needing an organizational framework to deal with the fact of decentralization.
MS. DIAMOND: Great.
The second point here is that it needs to be transparent to the user, so that individuals should be able to see the contents of the system that relate to them, that it should be backwards compatible. Again, we are focused on near term, and I think the group consensus was that in the next foreseeable one to three to five years, even going out five years, that we had to work with the infrastructure that we had. You couldn’t take it down for a weekend and bring it up with some new system, that backwards compatibility was essential to uptake and that it should be minimally - it should disclose minimal data even in a secure environment, and, Clay, you may want to elaborate on that.
MR. SHERKEE: Sure. There has been some work on the idea of a kind of secure layer, basically the notion of - you know, the - infrastructures was originally built on leased lines to make it secure, but there is, obviously, enormous expenses there, as we have seen in EDI efforts generally.
There’s been talk of moving to a sort of virtual private network, a VPN-based system, which has a data layer that has minimal standards of security for moving health data around between institutions. That, we think, is a necessary, but not sufficient characteristic for security, because, in addition, as the number of players grows, you worry less about man-in-the-middle attacks, as if were – people sniffing the data as it goes by - and more about man-at-the-edge attacks. You worry about privacy spills from participating institutions.
So in addition to the data being secure as it moves from Point A to Point B, we are looking at ways to make the data secure even when it is at Point B.
As an example, instead of, say, sending Social Security numbers in the clear, you send a hash of the Social Security number, essentially, a digital signature, so that someone at the receiving end can essentially compare that signature of the Social Security number and either say yes or no, we have this on file without seeing the Social Security number itself. So it is a way of comparing data to see if it is the same, before you actually commingle the data. So that is a kind of security that is not accounted for in transport-layer security, but we think still needs to be in the system.
MS. DIAMOND: Yes, and I should emphasize all of this work was motivated by the understanding that unless we figure out how to better link patient information, we are not going to be able to solve the quality gap, and we are not going to be able to give patients their information from a fragmented system, and so these are at least some early principles for trying to balance the issues.
Clay’s group has articulated several second-order ramifications which are that the - as I said, the ID will probably not be practical in any five-year work effort, and the group actually felt the risks outweigh the benefits. They went through a whole process to articulate this.
MS. DEERING: I’m sorry. It says do not outweigh, and you just said do outweigh.
MS. DIAMOND: Oh, sorry.
MS. DEERING: Was that a typo in your slide?
MS. DIAMOND: Yes, it is. Thank you, Mary Jo. I’ll be sure and fix those - fix your slides.
The second is that backwards compatibility means compatibility with whatever people are using today, and there is a whole infrastructure set up today intra-enterprise to try to deal with this problem, you know, hospitals sending patients to multiple sites and what have you.
A federation requires some set of mutually-enforceable agreements that include technical standards, privacy and governance, and that information has to be both accurate and secure from privacy spills using some mix of authentication and encryption to allow for remote matching in a secure fashion, which is essentially, I think, the point that Clay was just trying to articulate.
They are now working in two tracks, now that there is sort of a direction, and they are coming out with a way to approach the problem. They are looking at the technical, privacy and organizational standards of federation - what does that mean and what should they be? - and also what are the requirements for - security and responsiveness in this federation? In other words, what are the two different attributes of going forward?
I wanted to take one minute and talk about the personal health record working group. Again, here, David Lansky is chairing the workgroup in this phase, as he did last time.
They have several key deliverables. One is a guide to implementing PHR, and this is trying to look at recommended policies for integrating personal health records and electronic health records. Simply said, what do you share? When do you share it? What are the timing issues? What are the constraints? What are the best practices as far as we know them? And where are there gaps?
We are conducting a series of site visits. There are nine installations of PHRs across the country that the group is looking at. There’s a lot of stakeholder outreach. We’ve got some collaborations going, one with the AMA and one with AHRQ, one looking at policy, one looking at the issue of ethics, medical ethics and professionalism, and we are doing some work in messaging.
We learned last time that we don’t have a good way of talking about this issue in a way that people understand what we are talking about, and we have all talked about the need for consumers to understand this and to require this, and we are going to do a little bit of working testing some messages around connectivity and personal health records.
And then we are going to do another set of focus groups and telephone surveys, again, testing some of the messages and then trying to test some approaches that might get patients more interested in the infrastructure and in the personal health records.
Finally, David Brailer’s group, which is looking at legal, financial and organizational issues - I am not going to go into much detail here. They are a little bit earlier than some of the other groups, but I did put this information together to give you a sense of what they are working on.
Again, it is multi-pronged, and I guess the thing I would want to emphasize in the financial side is they are looking to develop a qualitative analysis around certain use cases. They have identified six use cases. All the working group chairs got together and identified some key use cases, like, I’m a patient moving between physicians. I’m a physician writing prescriptions. Whatever they may be, and then looking to put some qualitative parameters around the exchange of that information and the financial implications.
As I said, they are early in this process, but it will at least give, I think, people a methodology to work with when they are looking at this. Even if it is a plus-1 to plus-5 methodology and people’s numbers might be different, it’ll at least give people a methodology for looking at some of these as information exchange use cases.
And, finally, we are going to look at some of the legal and organizational issues within the context of this group.
And that’s it.
Mark and Clay are available on the phone for questions, and I would love to entertain them. I’m sure there are many.
DR. LUMPKIN: Great. What we were going to do is hear from Kelly, and then we are going to have an open discussion.
MS. DIAMOND: Oh, okay. Great. Oh, okay.
MR. BLAIR: Jeff Blair, can you hear me?
DR. LUMPKIN: Yes, Jeff.
SPEAKER: I can hear you. I don’t think they can.
MR. BLAIR: (Laughter). All right. Let’s try it again. Can you all hear me?
DR. LUMPKIN: Yes, we can.
MR. BLAIR: Yes, I would like to express how impressed I was with this overall presentation. Many of the general topics have been considered by many organizations for a number of years, but what impressed me was the balance and the respect for the divergent views and your obvious attempt to reconcile those divergent views with trying to build consensus, and that gave me a very high level of confidence that your process and your approach will yield results that we can have confidence in. I was very impressed. My compliments.
MS. DIAMOND: Thank you very much.
DR. COHN: Yes, you know, I actually was also going to chime in. I actually really appreciated what I consider to be some sort of fresh thinking around some of these areas. Nice to hear about people outside of healthcare being brought in for some of these discussions.
SPEAKER: Amen.
MS. DIAMOND: Thank you.
I appreciate those comments, although I always need to defect them back to the tremendous number of volunteers who work on this stuff with us who spend whole days locked up in rooms hashing through some of these issues, and people like Mark are few and far between, but we manage to find them to help us work on these issues, and I do have to give the credit back to them.
DR. LUMPKIN: Well, while we are waiting for that to -
DR. COHN: Yes, actually, it sounds like we are waiting for something to happen here.
DR. LUMPKIN: Yes, for the slides -
DR. COHN: Well, Carol, let me ask - this is Simon Cohn again, but is there - we are on the phone, so I can’t tell - you may have brought along a whole bunch of paper to share with everyone else. Are there paper versions of any reports that are easily accessible for us to peruse at our leisure?
MS. DIAMOND: Yes, I guess what I was saying in the front end is I shared more today than I think I could have, largely because I thought that the timing for bringing things to this committee was not necessarily in concert with the time line we had for our work. So these will all end up in reports.
I do want to say, you know, we did Phase One in nine months. We are doing this phase in six. So by June, July, there will be papers to share, and, in the meantime, I am going to try to do some interim postings on the website, to the extent that the workgroups are comfortable and the steering group is comfortable, as we get consensus.
I am thinking, actually, after our steering group meeting in April, we might be able to provide a greater level of detail around what the roadmap areas will be and where are the areas that we are going to - you know - sort of drill down, that need more work. So it will happen over the next couple of months, but all of this will end up in papers, and Clay is himself going to be doing the paper on both the issue of linking health information and will certainly help us in some of the technical aspects as well.
DR. COHN: Great.
MR. BLAIR: I would like to - this is Jeff. I would like to add one more observation. I especially appreciated your discussion of whether - of the different views as to whether an incremental approach was appropriate or a long-term change, and I kind of feel like you are probably going to - your workgroups will probably lead towards this anyway, but my thought is that not only are both necessary, you need to have a strategic view of where we are all heading -
MS. DIAMOND: Yes.
MR. BLAIR: - but you also need to recognize the reality of what incrementally could be done, but then you added in the point that you don’t want any of the incremental approaches to be dead ends, so that goes back to the need for the long-term vision.
So I am kind of anticipating that, as your workgroup thrashes this out, they’ll see that those two views are complimentary, not in opposition.
MS. DIAMOND: Yes, if I could just respond to that.
On the first point, what we did with the forks in the road, actually, is more than just say they were forks in the road. We actually asked people to talk about, in meetings, what they thought the key benefits and the key risks of those polls are, and we found consensus or we found the shared path by asking people to come up with solutions that accommodated the key benefits and risks, because it is hard to say that there aren’t any benefits or any risks for any of these positions, and I do think that that - has led us to not necessarily middle of the road, but opportunities somewhere that accommodate people’s divergent views and where people can see what is important to them materialize in the proposed solution.
MR. OVERHAGE: This is Mark Overhage. Jeff, as usual, you hit a really important issue on the head, and I think the other corollary to that is - I think - and, again, this is not an official position, but it is my sense of the groups - is that the long-term strategy and plan probably can’t be absolutely crystalized yet, and while we need to lay it out and have a direction, it may be a little bit fuzzy out there in the future, I think an important thing is being able to accept that fuzziness for now, but know that we are headed in the right direction, and then the fuzziness will get resolved over some of this early time.
MR. BLAIR: I totally agree.
DR. LUMPKIN: Okay. We are going to sort of put a bookmark right there. Kelly has now got - perhaps has her technology ready to go -
MS. CRONIN: It’s up on my screen -
DR. LUMPKIN: And now it’s up on our screen.
Agenda Item: Update on the HHS Council on the Applications of Health Information Technology (CAHIT)
MS. CRONIN: Well, since some of you probably haven’t heard too much about the Council on the Applications of Health Information Technology, I thought I would just spend a couple of minutes just giving a little bit of background information on it.
This is something that the Secretary created back in June of last year, the cochairs are Carolyn Clancy, who is the Director of AHRQ and Bill Robb(?), who is Acting Assistant Secretary for Public Health Emergency Preparedness.
I came in at the end of last year as the Executive Director from FDA, after sitting on the council for the five-or-so months after it had been started.
Just to give you a brief overview of what we are focusing on, we have a pretty broad charter, but our key activities right now are to promote a timely exchange of information about different activities that are going on across the agencies and also try to share information about opportunities that we know about or are exploring.
We are also making recommendations to the Secretary regarding strategic opportunities related to the adoption of HIT across the whole - system, and we are serving as the primary forum for both identifying and evaluating activities and investments that really are supposed to be complimenting what is going on in the private sector, which is one of the reasons why we are so enthusiastic in being involved and really staying involved with Connecting for Health Initiative, particularly this year.
As everyone knows, it is very difficult to get any work done with councils, so we have actually tried to establish several working groups to really focus in on some of the key activities, one of them being data standards, as we have all been talking about this morning.
We have had some immediate priorities that we have had to focus on over recent months. Helga Rypen, who was here earlier today, is chairing this workgroup, and she has led the group of people that we put together on this workgroup to try to focus in on our activities around the HL7, electronic health record functional model standard that has been developed over the last six months or so. As some of you may know, it has been a rather complicated process, and an awful lot of time and energy has been put into it, as Mary Jo can testify to.
But we have successfully, I think, gotten everybody together on this, and gotten input and consensus on not only our comments to earlier and the current ballot of DSTU, but we are now in the process of supporting the ballot, and, now, we really are going to be shifting our focus to coordinate on other activities having to do with HL7 and likely other standards developing activities that are high priority for HHS.
We also have an e-prescribing working group. This is largely stemming from the need to coordinate the implementation of the e-prescribing provisions and the new Medicare law. This is requiring very close collaboration with the Office of HIPAA Standards at CMS. In fact, Karen Trudel and I are chairing this workgroup to make sure that we are completely in synch with all our activities since, really, the deliverable here is a regulation on standards over the next several years that her office really will have to be responsible for.
And then we are also closely coordinating with NMA Council. They have similar responsibilities. There is a team that is focusing on this general area having to do with access to drugs that we are in synch with, and, then, obviously, the large burden is placed on NCVHS at this point, the Standards and Securities Subcommittee, to have a very aggressive hearing schedule over the next year to hear from all the stakeholders who we have to get input from to make sure that we are going to be putting together an adoption or a recommendation in September of ‘05 that is going to be palatable to everyone, and then move forward with a regulatory process.
But beyond NMA implementation - this is going to be a sort of a long-term effort - we really think there’s a lot of short-term opportunities. As Carol alluded to before, there’s that bifurcation incremental applications, where, you know, one of the options is to go forward with e-prescribing on a national basis. Perhaps all the standards aren’t there yet, but there are some that are working. We know that there’s some very good case studies out there. For example, in the State of Florida, there is a very successful e-prescribing program with Medicaid providers, and since there’s anecdotal data early on that suggests that that is very positive, we are continuing to explore similar type of activities and see if Medicaid would perhaps adopt that on a more widespread scale.
We also have a workgroup that Bill Yasnoff and Scott Young are chairing focused on electronic health record acceleration. Again, this is a coordination effort across all the agencies, and we have recently completed an inventory of all the programs that are involved with the use or funding electronic health records, but also those that really are going to, in any way, accelerate adoption.
We are in the process of drafting a policy principles document to sort of guide a lot of the HHS activities that we’re making sure we have sort of a consistent approach to adoption that will also be in support of all the other activities we have going on, namely, the emerging LHIIs and NHII.
We also are working very closely with the consolidated health informatics effort. As we all move into Phase Two, we realize that there is an important perspective that people who sit on K-HICK(?) can bring to the process if we can be very mindful of our policy and program priorities and trying to do not only a more careful gap analysis, but, really, sort of say, okay, out of these 24 domains and the gaps we have identified, what do we really need to focus on in the next six months to a year?
But we also need to be thinking very creatively about an implementation strategy, given that HHS does deliver some healthcare, but that’s - most of what we do is very much outside of that, but we do fund - grant administration contracts, cooperative agreements across all the agencies, and we are thinking now sort of strategically how can we work together to make sure we have a systematic reasonable policy that will encourage the adoption of standards, particularly as it pertains to data exchange with the government.
We also, in our council meetings, which occur about every three weeks or so, we have been reviewing a series of high-priority projects across agencies. The first one we reviewed earlier last year was Biasense(?), which is involving syndromic(?) surveillance and the use of data from various sources outside the public health system.
FDA has a proposal that they would like to implement trying to integrate their adverse-event reporting systems, which we have commented on and tried to add some value to.
There is an initiative out of CMS, doctor’s office, probably IT project that has recently been reviewed.
The National Electronic Clinical Trial Network from NIH has recently been presented, as well as the National Children’s Study, which is a large longitudinal study involving 100,000 children which will be followed every time, which will be enabled by emerging LHIIs and HII and Nectar(?).
So we are trying to make sure a lot of these opportunities and activities are coordinated, and, actually, this afternoon, we’ll be hearing more from CDC on FIN(?), as well as their futures initiative, which they have been working on for the past year.
So this is sort of a highlight of a lot of things we have been working on. Much is in progress, and we are trying to sort of keep up with the pace, but also think sort of strategically ahead about where we really need to be focused.
DR. LUMPKIN: Thank you.
We’ve had two presentations that look at the strategic approach to - both as a public/private partnership in Connecting for Health, and the CAHIT, and so I have to - in the sense of full disclosure, I have to say that, as chair of the NCVHS, I do sit on CAHIT, so I’m partial to that group, and I also am one of the principles of Connecting for Health in that my organization is a cofunder with the Markle Foundation, of Phase Two.
So questions? Comments?
DR. COHN: John, it doesn’t sound like you can say anything about anything.
SPEAKER: He has to leave the room -
MR. JOHNSON: Well, it’s interests which are not fiduciary. So I don’t think those conflict -
DR. GREENBERG: No, and I think you are going to be all right, too, Simon, on the issue we discussed.
DR. COHN: (Laughter).
SPEAKER: And your affiliation with those two organizations that happened to present today is totally coincidental.
DR. LUMPKIN: Totally coincidental.
SPEAKER: We can’t hear the person speaking.
DR. LUMPKIN: Oh, it was just another side comment at my expense.
MS. DEERING: Well, I just had an observation that I am glad that Carol did come today and raise, however slightly prematurely you feel some of your comments were, because it occurred to me in listening to Kelly make her presentation that your contribution to HHS, in looking at the various initiatives that Congress mandates us to do, and to help us discern what - how to avoid the dead ends, is absolutely crucial, because we know that that happens so often with federal funding, that it gets thrown out there well in advance of our ability to really think it through, and while we are never going to change that, why, the more we can perceive in advance what those dead ends -
MS. DIAMOND: I appreciate that, and I think we have a job to do - try to draw down and define that for many of the incremental occupations that are on the docket, if you will, because our members are also asking, for other reasons, if they should be making investments in some of these or is this going to be the standard? Are people going to use this, that or the other thing? And I think trying to understand at least some broad parameters is a better decision-making process than what we have.
MR. FERRER: Carol, this is Jorge Ferrer - I was wondering since you led a considerable amount of private initiatives if -
MS. DIAMOND: Hey, Jorge, can you just speak up a little bit? I’m having a little trouble hearing you?
MR. FERRER: Sure. Can you hear me now?
MS. DIAMOND: Yes.
MR. FERRER: Okay. I was wondering if you could comment - you know, you have worked quite a bit with the federal government the last two, two-and-a-half years on this. Has the federal government met the needs of the private sector with regards to the communication that we established? And, if so, are there any recommendations as to what you see have been some of the - between the federal government, the private sector?
MS. DIAMOND: Did anybody hear the end of that?
MS. DEERING: Can you repeat your last -
SPEAKER: You faded a little bit on us.
MR. FERRER: I’m sorry. If you can maybe share with us a little bit about what you felt were some of the barriers between the private sector and federal government initiative and what you would consider to be some recommendations for this continuation of private, federal, collaborative that you’ve been heavily engaged for the last three years?
MS. DIAMOND: I see. You know, I’m probably the wrong person to ask about the barriers, because we have enjoyed a level of participation and dialogue that I think has been very valuable.
I actually think the only reason we still exist is because people found value in having a place to have these conversations, which is not always completely easy to do.
I do think that it is very important that we align strategically and carefully as we sort of map out these things. I mean, as Mark was saying, there is some fuzziness about long term and we’ve got to deal with that, but we should be very well aligned.
I think, in addition to having the dialogue and the working groups and the opportunity to flesh out some of these issues, there is a role for, I think, both public and private sectors to play on dissemination and communication of these things when they are agreed to, and I think that may be an area we fell short on last time, and it is certainly something that I don’t have the answer for, but we are thinking a lot about this time.
DR. LUMPKIN: And if I can sort of put this into context with the work of the workgroup, there are really two parallel processes that are happening this year, and it is very fortuitous, because that is when we also want to engage in developing our next iteration of suggestions and recommendations on the development of the NHI, and those two developments are really the work that we had spent the morning - the first part of the morning talking about, which is the conference, and then the work that Carol reported on, and that is that, in a sense, the Connecting for Health is - for lack of a better term - an elite process, because, really, it is going out towards all the leaders, and the people are represented on the steering committee represent leaders in the federal government, leaders in the vendor community, the provider community.
The NHII conference, as a conference of 1,000, represents, in many ways, the breadth of those who are interested in that, and then our job, as a committee, is to take that input from both processes and try to integrate that into recommendations, to take the long-term perspective from the roadmap that the Connecting for Health will pull together.
Now, to complete the picture, as we all know, this issue of health informatics and its important role has gotten attention and focus from the President and was part of the State of the Union Address, and so the work of K-HIT(?) and other work within HHS is a key component of making sure that, as we make recommendations, as recommendations come from the outside that the department has a single approach, and what we have seen in the report from Kelly is that, really, we haven’t seen that there has ever been a central focus where these major initiatives by various operating divisions within the department have gone to one location so that others know what is going on, that there is some sort of common focus, and so there are a lot of pieces that are coming together that enable us, as we are developing our vision, to suggest the long-term approach.
MS. DIAMOND: If I can just add to that. I mean, we rely on your vision for the work we are doing, and - of this committee - and we hope that, as the long-term vision, both through the conference and the work of this committee become more elaborated, it can also further our ability to try to provide some clarity about the near term, but I very much feel that that is a necessary ingredient for us also to be successful, that we can’t bring the public and private sector together and focus on near-term actions if they are not in concert with where the committee feels the long-term view is. So I hope we can fulfill that balance.
DR. STEUERLE: This is probably discussed indirectly, but it certainly would help me, as you proceed and you write up recommendations as things come out to our committee or wherever, to the Secretary, whoever, public, if you can not just identify what, but the extent that your members would do it is who. You know, if Ken and Steve would not agree on the allocation of a health budget between NIH and CDC, I would like to know who should decide it. If I am not going to give it to one or the other of them, I might want to know who is going to do it, and I sort of have the same questions, a lot of these things is - as a recommendation, we’ve got this conflict, we have to get the groups to recognize there’s a conflict. Who - not only who can decide how to break the logjam, but, in some cases, is somebody actually even accountable, especially if it’s the government. I think, government accountabilities is very important to force decision making.
MS. DIAMOND: I couldn’t agree with you more, and I think there is a lot to figure out there. As you saw, one of the 10 questions that I had distributed in the interviews was who should do this and when, and I do have to say that there is more unclarity about that. So even where people think they can identify something near term, there isn’t often and so-and-so should do it and here’s how long I think it will take.
I think for many of these recommendations we have a responsibility to try to understand that, and without that, I think they will be less helpful. So I completely agree with you. I just want to punctuate the fact that I think some of these are tough questions to answer.
MS. DEERING: And this is to Carol. As you know, one of the things that I most appreciate about your work is how you have really taken the lead in the personal health dimension, and David’s work through you is just absolutely wonderful, and you are the furthest along and you’re doing the most and you’re doing all the right things.
I still have to note, as much for the record as anything else, a persistent contradiction in this whole field, and even in your areas that is demonstrated by two of your slides that your Slide Number 35, the Policy Attributes of the Common Framework, Point Number 2 is built on the premise of patient control and authorization, which I know that you believe in.
On the other hand, as you transfer over to Slide 38, the Open Issues, you are just looking at policies that will allow patients to control their information. So I’m just saying that it’s a fine line and it may seem to be only language, but I think, deep down, it does permeate the issues that we are struggling with.
MS. DIAMOND: Yes, actually, the Open Issues slide was three slides long and I did cut it down, and there are a lot of other issues imbedded and second-order issues.
Some of these have no answers, but I think the issue of the patient, in particular, is one that I hope that - will begin to help us understand also, because we have got to learn from the implementation that is out there. We can’t just sort of sit around and make it up, and that is the whole reason we are making the effort to actually go sit down and talk to people and understand what they are doing on many of these fronts because it is the only way forward, I think.
But point well taken. I appreciate it.
DR. HUFF: A comment and a question.
Again, I would just echo that you are doing some wonderful work, you know, and the background that you provide - a lot of what you presented, to me, focused right on architecture and standards and things that we are going to discuss in the July meeting.
My comment is that there seems to be a building counterculture to standards, which is interesting, and I can’t let that go without some comment, and I guess I would characterize actually what is happening, and I have heard this, now, I guess a couple of times from different people. I think there is a misunderstanding, and by that I mean people talked about or I have heard Dr. Brailer say, if we had done standards, we wouldn’t have been able to achieve what we achieved, and I think it is really misstatement, because, in fact, what they did is created their own simpler standard, and by simpler, what they did is they had lower expectations, and because of that they were able to do something simpler than using standardized coded terminologies and using HL7 messaging and other things. In other words, their goal was only to get information so that a physician, a human, a provider, anybody could read it and understand it. Whereas, the goal - if you want to achieve most of the financial benefits of this, in fact, it needs to be coded and structured and represented in another way, and so I guess one message is that it is sort of a pay-as-you-go. If you want more functionality, then you are going to have to pay the price of the greater sophistication and complexity, but even at their level, they created standards, essentially. What they did is created their own standards to implement their system. They didn’t do it without standards. They just created their own, and there is a great temptation to do that. There’s this big feeling in the community that because XML exists and I can send you an XML message and anybody can parse it, that somehow we have created understanding, and so, anyway, that is just the comment -
MS. DIAMOND: Stan, I have to respond to this because I couldn’t agree more with you, and, actually, one of the things that motivated me to do these interviews was I was hearing that, too, which was some combination of inpatients with do we really need it, and I think one of the opportunities we have in Connecting for Health, both in defining what a dead end is and in talking about near-term needs, is to articulate the risks and benefits of doing them both ways, and it is okay for people to decide, but I think people need to make informed decisions, and that is what we are going to do with the steering group and with the committee.
But I do have to emphasize that we’ve got to find some middle ground on this issue, because there is a growing tendency to look for some silver bullet that - you know, there is so much pent up demand for IT and information mobility and all this, that people will be quick to get behind something that feels like, you know, tomorrow you are going to log on and you’re going to have some information about a patient that you didn’t have yesterday, and that’s better than nothing, and so let’s just do that, and I just really do think we’ve got to balance those two issues seriously if we are going to be appealing to those polls.
MR. YASNOFF: I agree with what has been said. I think what people are searching for is an incremental path to get there, and so recognizing that if you don’t show anything to physicians until you have completely standardized and encoded information that that doesn’t give you an opportunity to recruit the physicians in terms of getting them interested, and part of the theory of this - and it is kind of an interaction between the incremental approach to systems and dealing with the organizational issues involved in getting people to use systems - part of the theory is that if you can present free-text information to physicians that they can interpret - for example, of lab results - that, then, physicians will - once they get used to it - ask the question, well, can I have flow charts of that information, and, of course, the answer is no, and they will ask why, and the answer is because it is not standardized and fully encoded, and the hope is - by people who are taking this approach - that then physicians will become part of the demand for standards, because they see every day what it is preventing them to do, rather than it being theoretical. So that is kind of the framework in which this exists, but we do have to be careful that we don’t, essentially, miss all the benefits, as Stan said, by, essentially, abandoning our efforts to have standardized encoded information at the point of care that can be used for decision support.
MR. BLAIR: Can you hear me?
DR. LUMPKIN: Yes, Jeff.
MR. BLAIR: Okay. I agreed with Stan’s comments and I agreed with Bill’s comments, but we have been thinking in terms of two dimensions, and I think we open opportunities to address this if we think of a third dimension, and let me go back here.
We are talking within the idea of standards, and we are thinking of incremental approach - that’s kind of one dimension - and then we are thinking of where we want to go in the future - that’s long-term, whether that’s architectural or standards, whatever - and we recognize the value of both, but there’s a third dimension that could help us, and that is that for those folks - for those folks - for those healthcare institutions and providers that have a less than optimal local standard - and maybe that is not the right term to describe - maybe that is not how they would describe their own enabling capability as a local standard. Nevertheless, for those folks that are looking to get function and value quickly - all right? - and that is going to be with us. There’s always going to be some folks, whether it’s a vendor or whether it’s a standards organization, whatever, that is going to say, I could get benefits near term. Please don’t make me wait for the optimal solution or please don’t make me conform to the incremental steps, and we can accommodate that if we also think of the third dimension which is - oh, boy. Did I lose the word here - convergence, where, ultimately, we need to converge to our long-term strategy, but in the short term, we can accommodate multiple different incremental - as long as they will converge to the long-term goal, and that way, the value of that is that we are inclusive, and we broaden the support for where we want to go.
So I would encourage those three thoughts - the incremental, the strategic long term and the idea of convergence, which opens the door to multiple implementations or incremental steps in the short term, and that broadens our appeal and our support.
DR. HUFF: Just my last question - I see so much of what you’ve done as being relevant to the discussion that we can have in July in the standards and architecture part, and I just want to try and understand the process. I mean, when is that going to come back together? I mean, does it come back to this committee ultimately, so that we’ll have - you know, your further input as your process goes on will have the input from the 1,000 folks at the - is there a specific time when this is going to come back together and we try and reconcile or correlate or something?
DR. LUMPKIN: Well, what thought I had is maybe at - we have a hearing on Friday during the NHII conference, and the morning of that hearing we’ll be getting the reports from the breakout sessions. We then have the - we adjourn, have the closing sessions of the full meeting. There’s lunch. Then we have an afternoon, and my thought would be is perhaps if we could get a report from Connecting for Health and then spend the remaining amount of time at our meeting of looking at areas that we may want to - in sort of setting a work plan for the next couple of months, based upon hearing what we heard in the morning, what we have heard from Connecting for Health.
MR. YASNOFF: Carol, when are those reports going to be ready? Because it would be nice if - I mean, if we could have them available to people before - at least a little bit before the meeting, so people could read them and they could also be the subject of discussion and consideration in the breakouts.
MS. DIAMOND: Yes -
MR. YASNOFF: But it depends on your time line.
MS. DIAMOND: I think that would be ideal, because if we line these up as a - ours is a longitudinal process that benefits from months of thinking and bringing people together and what have you, and you are going to have a set of breakout sessions that aren’t going to be as deep.
I think one way maybe to balance that is to try to get things distributed, and I think it would be easy for us in each of the areas to put work in progress out there.
On the time line that I showed before, actually, we had identified the summer months for vetting, and I think it is a perfect opportunity to do it.
I do think that, on the technical side, getting that input over the summer and at your conference would be ideal for us.
What we could do is potentially make a presentation, someone from the group would make a presentation, Mark or someone else, and say this is work in progress from this group. There’s actually -
MR. YASNOFF: Can we - I mean, is that written material? Could that be available by mid-June, in which case, we could put it on the website and distribute it at the meeting? Let’s talk after -
MS. DIAMOND: Yes -
DR. LUMPKIN: At our hearing on Friday, we may want just a very short briefing, because it would already have been vetted -
MS. DIAMOND: I think we should put work in progress out there. Yes, I think that could be available by June. Our full roadmap won’t be done until after that.
MR. YASNOFF: Yes, and my concern about presentation is a) there’s no slots in the conference, but the other thing is that in doing these things before, it is the material that you give to people in advance, if they have read before they come, that really influences them more than what you hand them when they get there or even what they hear in the session.
MS. DIAMOND: I agree. Okay. I like it.
DR. LUMPKIN: Great. We have a plan.
MS. DIAMOND: Aye-yie-yie.
(Laughter).
DR. LUMPKIN: And a deadline and commitments.
MR. YASNOFF: Let me say that I appreciate the work of both CAHIT and Connecting for Health, both very helpful, and, in particular, keeping up with the pace of Connecting for Health has been very challenging, and so I -
MS. DIAMOND: You just made it more challenging.
MR. YASNOFF: Right. Well, I’m happy to return the favor by asking them to speed their process up even more. (Laughter).
DR. LUMPKIN: Thank you.
And, at this point, I would like to thank our presenters.
We will be taking a break for lunch. We’ll be back at one o’clock.
(Lunch 12:25 p.m.)
(Resume 1:12 p.m.)
Agenda Item: Workgroup Discussion
DR. LUMPKIN: What I would like to suggest that we do is if we can identify the new dimensions we want to talk about and which one of the overlaps we think we may want to focus in on for the next one. It could be all three or if we develop new dimensions, there could be more.
And then, between now and the next meeting, which we probably need to meet some time late May early June -
DR. GREENBERG: The full committee is meeting, I think, the 15-16 or 16-17th.
DR. LUMPKIN: Do we have a slot?
DR. GREENBERG: We can give you a slot.
DR. LUMPKIN: Okay. So we’ll meet at the next -
SPEAKER: Can we get more than an hour-and-a-half, pretty please?
DR. LUMPKIN: Can we get like a real slot?
DR. GREENBERG: Oh, a real one.
DR. LUMPKIN: Instead of a workgroup slot?
SPEAKER: What do you mean a real slot?
DR. GREENBERG: What? Two hours?
DR. LUMPKIN: Yes.
DR. GREENBERG: More than two hours?
DR. LUMPKIN: Yes.
SPEAKER: Instead of an hour? Is that significantly different?
DR. LUMPKIN: Well, it’s different than like getting stuck on at the end of - you know, like - like the real subcommittees get like a real slot, and then everybody is supposed to go from that meeting all tired to our meeting.
DR. GREENBERG: I hear you.
DR. LUMPKIN: Yes. Okay. So anyway, we have put in our plea.
DR. GREENBERG: Um-hum.
Do you have any influence with the people organizing the meeting?
DR. LUMPKIN: (Laughter). Very, very little.
DR. GREENBERG: (Laughter).
MR. BLAIR: Could you slide the phone a little closer to John?
DR. LUMPKIN: I actually was going to the -
DR. GREENBERG: Blackboard, whiteboard.
DR. LUMPKIN: You know, there’s a whole generation of kids growing up who have no idea what a blackboard is, but I am going to the wall-mounted writing -
SPEAKER: Is that better, Jeff?
MR. BLAIR: Thank you so much.
SPEAKER: Yes.
SPEAKER: He’s standing right over it. Of course, it’s better.
SPEAKER: Well, it’s better. Of course, you can hear me, but, I mean, can you John.
DR. LUMPKIN: What we are going to try to - attempt to do in the next 40 minutes or so is to identify the new domains that we want to address, the interfaces we may want to address, and then to maybe get a little bit of homework, if we can get some people who - volunteers who may be willing to sort of put together an outline of what might be a descriptor of that domain or the issues that need to be discussed within that domain, so we can go into the next meeting and perhaps begin to flush that out. If that’s agreeable as a work plan.
DR. GREENBERG: And who all is on the phone?
MR. BLAIR: Jeff, I’m here. I think - Simon, are you there?
DR. LUMPKIN: We haven’t heard from Simon for a while.
MR. BLAIR: Okay. How about Jorge, you were there. Are you still there?
SPEAKER: I think Simon heard the word homework -
SPEAKER: Homework.
(Laughter).
DR. GREENBERG: He heard the word homework and he dropped off?
DR. LUMPKIN: No, he’s really on, but he’s not admitting to it.
DR. GREENBERG: But Jorge is still on?
MR. BLAIR(?): I heard somebody say something about volunteers.
DR. LUMPKIN: Right.
SPEAKER: Yes, and you dropped off at that point, Jeff.
DR. LUMPKIN: Okay. As I remember from our current discussion, we have one, I think, fairly solid candidate for a new dimension, which is -
DR. GREENBERG: Why don’t I write and you talk?
MR. BLAIR: Well, let me ask - is there something we can’t do or represent because we lack another dimension?
DR. LUMPKIN: Well, I think the issue, though, is is there an audience that we don’t speak to well, because we haven’t defined NHII to them in their dimension? That was where we got to in talking about new dimensions, because, really, the function of the dimensions were to say that if it works for individuals, if it works for healthcare providers and if it works in the population health field, then we will have achieved our goal of implementing a functional NHII, and I think the further question is are there other groups who we think are not as active participants in this process who we need to speak to that we haven’t, and those would be reflected in a dimension.
And so the first one I put up was research.
MR. YASNOFF: I am certainly going to speak strongly in support of that, since I have been now giving talks about this for months and months where I show research/policy as a fourth dimension. So I think that that is a very, very important area, and a very important use of the information, and it, ultimately, may derive the greatest long-term value.
MR. BLAIR: Bill, when you say research/policy, my thought is you are thinking of public health research, as opposed to clinical research.
MR. YASNOFF: No, no, not at all.
DR. LUMPKIN: Health services research?
MR. YASNOFF: I’m talking about clinical research and developing health policy in a general sense.
In other words, health policy has always been informed, to some degree, by health statistics and information about the health and the care of the population, and, clearly, to the extent that we have all the information available, those policy decisions can be informed by much more complete and much more accurate data.
MR. BLAIR: Then I would just suggest that you add the words that you just added, clinical research and public health policy research, because, otherwise, I think people might misunderstand what you meant by research.
DR. STEINDEL: I totally concur with adding a research domain. I think - is there a group that we are not really speaking to, and the research community I think it is very clear we are not speaking to that community with the original document.
SPEAKER: They left.
SPEAKER: They left. Take them off. (Laughter).
MR. BLAIR: - underneath it where you have both clinical and public health as subsets of research.
DR. STEINDEL: Jeff, let me go on and address the policy part second. I wanted to address the research part first.
It is an area that we didn’t address, and it is also an area that NIH is now putting in the forefront that the clinical research needs to integrate faster with the clinical practices. So they have identified themselves as wanting to integrate more with this community. So I think it is very important for us to start emphasizing them as another dimension.
Now, I want to comment on the policy part and forget about the word public health or whatever we want to put in front of the policy part. You know, I agree with Bill, totally, that if we have an NHII together that we will make more and better-informed health policy decisions, but is there really a policy group that is not addressed by the other areas of the NHII. It kind of comes with administrative. You know, we had the discussion about an administrative domain, and we realized that the administrative domain was really encompassed within the other domains, and also within HIPAA itself, so we weren’t going to enumerate it separately, and does policy fall in that same type of area, where, if we did have an NHII together, we would be getting the information that would better inform the policymakers or are they a separate group?
MS. DIAMOND: I was just going to ask what is left in population if you spike out research?
SPEAKER: Like all of public health.
MS. DIAMOND: So that’s my question. If it is only public health, then you should call it public health, because my view is - (laughter).
SPEAKER: No.
SPEAKER: No.
MS. DIAMOND: But, well, here’s the thing, why isn’t research population?
DR. LUMPKIN: Because clinical research is not really population -
SPEAKER: And biomedical research is not population research.
DR. STEINDEL: Well, when we say research, you know, we may not be necessarily talking about humans. We may be talking about animal models of cancer research. That’s the start. That will move up into the clinical area more rapidly.
MR. YASNOFF: Clinical research, in general, is not population research. It is typically research on specific diseases and their ideology and management and so on, and so, actually, one of the criticisms of the medical research community is there has been inadequate focus on population - population research.
MS. DIAMOND: So does population-based research stay in population?
DR. LUMPKIN: Yes. Actually, what happened was the original -
MS. DIAMOND: And I recognize the distinction. I’m just trying to understand why you put them in buckets.
DR. LUMPKIN: All the way up until probably the next-to-last iteration of the document, what is now the population health dimension was called the community health dimension, and it was thought that the word population communicated that - I think Jeff was the one who made us change it.
MR. BLAIR: I probably did.
SPEAKER: We can go back to the minutes, Jeff.
MR. BLAIR: It seems to me that the research area that we have omitted is the clinical research area, and that the population area includes public health research and policy. So maybe -
DR. STEUERLE: Not necessarily policy.
MR. BLAIR: Okay.
DR. GREENBERG: Probably includes public health research and health services research.
MR. BLAIR: Okay.
DR. LUMPKIN: Let me give you an example of what would not be included. Jack Winberg(?) up at Dartmouth takes Medicare data and creates what is called the Dartmouth Health Atlas, and he does a lot of research on variability and cost, variability and quality. That is a - really, that is a health services research entity, and we really haven’t addressed that.
DR. GREENBERG: Well, I think that should be under population.
MS. DIAMOND: That was my question -
MS. DEERING: Well, I would like to argue on John’s side of the table, because we - in previous discussions of adding new dimensions, we did, in fact, come to agreement that one of the guiding criteria would be not to not only influence people who needed to be influenced, who were major players in the field, but also to capture efforts and initiatives that were underway that haven’t been captured, and so when we talked about research, it was, indeed, biomedical as well as clinical, because of what Ken Muto(?) represents and the huge effort that he has coming underway and the need to be sure that that doesn’t stay outside the fold, and since everyone’s goal is eventually to have a continuous stream of data exchange. So that was part of our previous discussions around research.
And in terms of policy, we agreed that there is a whole universe of health policy wonks out there who really aren’t going to look at any one of those other budgets, and, actually, Gene and I, at lunch, were having a discussion about different data needs that - for example, his way of looking at CMS data and splitting it by households. There’s different kinds of health data that may emerge from the NHII that aren’t really - aren’t necessarily done automatically within any of the other buckets, and, yet, the people on Capital Hill and the people who write policies and the people in academia who think like health-policy people need to be influenced and need to understand what it means to them and their decisions. So I think we took sort of an audience-based approach as well as an opportunistic approach.
MR. FERRER: Mary Jo, this is Jorge speaking -
SPEAKER: Speak up, okay?
MR. FERRER: Can you hear me now?
SPEAKER: Not well.
SPEAKER: Only faintly.
SPEAKER: Shout.
MR. FERRER: Can you hear me now?
SPEAKER: Talk loud. Keep going.
DR. GREENBERG: Maybe we might need to adjust the phone.
MR. FERRER: I think regarding research and policy the crossroad of the clinical and financial - oftentimes at CMS, one of the things that I have often been concerned with that there are some huge policy decisions that are made on very faint clinical evidence, and I haven’t heard a lot of discussions as to - quote - the clinical ramifications of data collection that actually will influence the financial policy, because so much of our healthcare system, we like it or not, is driven by the policy decision makers that finance our healthcare system. So I would like to see people at least have that on their radar screen. I’ve been trying to do that for 30 years, but it is something that is not going to go away, and as our health begins to consume much more of the resources of CMS, you know, they are going to be really tied up to try to make some decisions about allocation of finances to services that might not have a lot of clinical evidence.
Dr. LUMPKIN: Do you see, then - are you saying that you would see policy as a separate dimension from research or population or would you see that as being an important component of research, to guide policy?
MR. FERRER: Well, I think it is critical. I mean, as you all have - you know, walk through some of these policy decision making bodies, at least within CMS, that are making decisions about the payment of clinical evidence, and some of you guys might not want to be in the room when you realize how little evidence there is at times, and you make these huge payment policies that clinicians have to deal with for like the next 20 years.
DR. LUMPKIN: But I am going to try to pin you down. Would you make that a separate dimension or would you say that those decisions that are being made aren’t guided by adequate research?
MR. FERRER: I think those decisions are made by inadequate clinical evidence.
SPEAKER: And that is different from research. Okay.
MR. FERRER: However you think you want to -
DR. LUMPKIN: Okay.
MR. YASNOFF: But I don’t think you can put it in the same - I don’t think you have to create a separate dimension for policy -
DR. LUMPKIN(?): So we could call it the research policy.
SPEAKER: I do. I think - really different audiences.
MR. BLAIR: Can I ask a clarification?
DR. LUMPKIN: Yes.
MR. BLAIR: Clinical guidelines and protocols, where would they fit within these dimensions if we add a clinical and biomedical research and policy?
DR. LUMPKIN: Well, let me remind you of our visual image, which are these VIN diagrams of overlapping circles.
MR. BLAIR: Right.
DR. LUMPKIN: So where I would put clinical guidelines would be in the overlap area between research and provider dimension.
MR. BLAIR: Oh, thank you so much. That is a good clarification.
DR. LUMPKIN: I may not be right, but that’s -
DR. STEINDEL: Yes, I mean, I would put it in the overlap of all the dimensions, but I would put it in the overlap area.
DR. STEUERLE: When I think of policy research, and I may be thinking narrowly, but when I think of the people I know in public policy schools or economics departments or places like that, which, by the way, is a very small community, so I am trying to think of how much we could add to these sessions and in the context of an HII, which is even also a narrow component, it seems to me what they often do, which is slightly different, which leads to your VIN-diagram world, is they are often one way - Jeff, you got dropped again - (laughter).
SPEAKER: Are you guys still there?
SPEAKER: Jeff, are you injured?
MR. BLAIR: I can’t hear anymore. (Laughter).
MS. DEERING(?): John is kicking you around.
DR. STEUERLE: When I think of what they often add is they are adding a bit more of a - I don’t know, a double-entry bookkeeping system or a cost-benefit analysis or they are adding the financing side. So they might make use of clinical data in some cases, but then they want to compare that to the cost of what you are buying to be able to make a policy decision over whether this is the right allocation of resources.
It seems to me it often does sort of pull in the resource side, cost-benefit analysis, something along those lines to try to make decisions, that that’s often the types of things that goes on in policy. Obviously, there are other things that go on, too.
And so then the narrow question is, within the context of NHII and the sessions we are going to have, is which of these people could we pull in or make participatory. You know, David Cutler has a book out now just recently, Your Money or Your Life, if you haven’t seen it, and he’s got a whole long discussion about whether we are getting our money’s worth out of the advances in healthcare and whether we are measuring it right relative to cost. You could question whether that research is right or not or somebody like Inuvi Rhinehart(?) at Princeton or somebody like that.
I’m just trying to think of who we could pull in and how they would - the policy researchers might narrowly focus on what we could get out of this, and I’m not quite sure - I don’t think you could certainly get a full session, you might pull them in somewhere else, regardless of where you fit them in your VIN diagrams.
DR. LUMPKIN: Let me try this - Kelly, you’re shaking your head.
MS. CRONIN: I’m sorry - (laughter).
DR. LUMPKIN: Go ahead.
MS. CRONIN: I just argue that. I think it is much broader, because I think that historically -
MR. BLAIR: A little louder, please, Kelly.
MS. CRONIN: Well, I just think that, historically, people have been so critical of the fact that policy is made in this country without evidence, and that this presents an enormous opportunity for research to generate the evidence that can then truly inform policy in a more meaningful way. So I think it relates to almost each one of the circles so far in the VIN diagram. It is just a matter of how we want to present it.
DR. LUMPKIN: I have a solution. Let me ask this question: What if we were to take these ideas and for the time being, ‘til our next meeting, play with them as if they were going to be separate dimensions, look at how they flesh out, and then revisit the discussion about whether or not we can refine them into one, or if they seem to stand alone, whether there’s some lopsidedness that maybe the policymaking is too narrow?
MS. DEERING: One way that might accomplish two things at the same time, and it adds to the homework assignment, but it would be - I know that you are going to then say, who is going to start flushing them out? And you are going to look for volunteers, but it does seem to me that in order to foresee what these kinds of questions will be, whoever does this homework should take a little stab at not just flushing out, say, the research dimension or the policy dimension, but even if it is in one or two bullets, should touch on the interface areas and what are the policy implications of personal health dimension? What are the policy overlays with the provider dimension, et cetera, and the same for research as well.
Again, I don’t think we are going to do lengthy dissertations on any of this, but just so that, up front, we have already thought about that, so that we don’t have to do that work once we sit down again.
DR. LUMPKIN: Really thinking just sort of as an outline, what would be examples of things in the interface? Like we talked about the interface of research and the provider dimension being clinical guidelines.
MR. HOUSTON: The other way around. To me, it’s the same thing with a different fashion is take all the different component pieces and decide where they go in a VIN diagram before you decide the answer to Mary Jo’s question. Just sort of what you just said. We gotta figure out what the intersections are, what goes in those different intersections before you try to answer how they can relate, because, in theory, they relate to all the different - you know - they relate to research - policy and then - you have to first determine that they do before you decide to answer what - you know - how they relate -
DR. STEUERLE: I think all of us are sort of coming at this from our own perspective in terms of defining what you mean or what other people mean by policy and then whether it’s part of the big global scheme or something separate.
I think I would find it helpful if there were some way to have a one-page note that I could actually send. If you want to ask something about policy research, I wouldn’t mind sending a one-page note to some policy researchers, say, here’s what we are doing. Maybe it’s a longer note. Here’s what we are doing at this session. What are we missing out on? As opposed to us just perhaps repeating this conversation.
We are trying to define the global issue without knowing the particular things that fit into it - that might fit into it. You could probably pass something around RWJ and get 100 comments, right? Does that make sense?
MR. BLAIR: Is this a time when somebody could suggest another dimension or do you want work on the ones we have?
DR. LUMPKIN: No, go ahead.
SPEAKER: Bill has a comment.
DR. LUMPKIN: Okay, Bill.
MR. BLAIR: The -
SPEAKER: Jeff, hang on one second.
DR. LUMPKIN: Hold on to that for one second.
MR. YASNOFF: Hang on one second.
No one asked me the question why I added research/policy as another dimension. So since -
MR. BLAIR: Why did you do that?
MR. YASNOFF: Thank you.
So the reason I added research was because clinical research was missing, and I needed to address that audience, and the reason I added policy is that I am presenting this over and over to policymakers who are happy to see that, in addition to improving quality and reducing costs and all these other things, that it actually will help them to make policy with information, which, in many cases, is a revolutionary concept. Because, often, the policy has to be made for various reasons with no information, many policies have to be made without research because the research that would be needed to make the policy is unethical. So that’s why those were added.
Now, as to whether they should be separate dimensions or what, I think that is up to the workgroup, but I think those areas need to somehow be recognized.
DR. STEINDEL: Just responding - Jeff, if I may respond quickly to Bill.
You know, one of the things when we put together the original VIN diagram was we wanted a way to visualize what we were talking about, and Bill just introduced another aspect of the visualization, and that is who are we presenting this to?
Well, when we published the original - whatever it was - information-for-health document, we were focusing that more in a narrow community, and, now, it is obviously not a narrow community. It is a very broad community, and the policymakers are very involved with it. So some way of visualizing the policymakers in the diagram, I agree, is very important.
DR. LUMPKIN: Let’s go to Jeff for the next dimension.
SPEAKER: (Laughter). The fifth dimension.
MR. BLAIR: Okay. Payers. A payer dimension, and, initially, I had been resistant to that, because I really wanted it to focus on patient care, but, as time has evolved, and I am aware of the fact that payers provide incentives for how patient care - what priorities will be executed in terms of patient care, and so I think that they need to be represented.
And the additional idea that I have - and I am not sure we’re there yet - we have a personal health dimension and a provider dimension if we have a payer dimension, and I think if we have a research community health dimension and a public health dimension, then all of our dimensions represent user communities, and I wound up saying a research community and a public health community in the sense that the word policy - policy could be done by many different of these entities, and so I am not excluding policy, but I think policy would be within one of the dimensions in terms of - if each dimension is like a user group, let’s put it that way, then we are consistent in the way we are representing the dimensions.
DR. LUMPKIN: Well, let me sort of run through a little logic chain to explain why I think I may agree with you, although I think payers may be too narrow.
If we were to have this discussion in the UK, we could all agree upon the provider dimension. We could all agree upon the consumer - the personal dimension and population dimension, if we were all speaking with those funny accents that they have over in UK or maybe they think we have funny accents.
We certainly could all still identify with a policy research - research/policy or a dimension of - those two dimensions.
With a single payer system, we would probably be less - all that stuff would sort of be incorporated into.
SPEAKER: Part of policy.
DR. LUMPKIN: It would be part of policy, but we don’t have a single payer system. We have multiple payer systems. We are different from the UK, and this may be one of the ways that we are.
So I think I’m kind of leaning towards exploring that.
MR. HOUSTON: Take, again - one of Jeff’s ideas - take the whole policy thing and sort of wrap it around the whole VIN diagram and say, everything we do has some policy implication to it. I mean, don’t just say it’s a component of each, but sort of make a big circle around the whole thing, because, really, I mean, policy is, I think, probably what guides all of those areas in its entirety, in all cases.
SPEAKER: I would suggest that it’s not only the recipient, but it controls these dimensions you are looking at. Sometimes, what we do with these dimensions isn’t the basis of previous policy. We silo healthcare data. We’ve got things going on right now that are differentiating between public health and battle terrorism. We collect data and change data because policy dictates it, even though you would have to say from a clinical standpoint, we shouldn’t change data. So I think you have to also be aware of how policy impacts what you do in these exchanges. You can’t just say the exchanges will result in new policy.
MS. DEERING: I have an idea, but I know it’s a bad one, but what I am asking for is a reason why it’s bad - (laughter) - and that is these are all – I go back to the comment that these are all user dimensions. What about the enabler dimensions? I’m getting at industry. I’m getting at industry, and according to one criteria, there is certainly a distinct target audience for us, but, as I say, I’m sensing that it’s not right, and yet they are so huge -
DR. LUMPKIN: Can you elaborate on what you mean by industry? Business?
MS. DEERING: I think I’m thinking the technology industry. I think that’s what I’m thinking.
DR. LUMPKIN: Vendors.
MS. DEERING: I think I’m thinking vendors, but then I started to ask myself should I use the term enablers, I mean, those who actually - the suppliers. Maybe that is another way to look at it, you know, the suppliers. I don’t know. Vendors comes closest to the classic characterization.
MR. HOUSTON: They react to each one of the dimensions. I mean - vendors - react to the requirements that the dimension imposes on them, I mean, because you are only going to do things that there’s something - a commercial outlet for. So you are going to respond - you know, if there is a desire on the provider side to have - AHR functionality, you’re going to respond to that. So I think it is part of the dimension.
DR. STEINDEL: Mary Jo just - I think - keyed a thought pattern in my head that I would like to throw out. You know, in the original document, in the original VIN diagram, we were talking more about consumers and users of the NHII. While we did make in our recommendation section some ideas on how to put this into play, we never really talked about the enablers of the NHII, the people that - and the reasons we are causing this to happen and the people that would sustain it in happening, and the payer dimension might fit into an enabler area. Technology fits into an enabler area. Vendors fit into that area. You know, maybe we should think about changing some of the focus and adding not another dimension, but another aspect.
MS. DEERING: Another plane of being. (Laughter).
DR. LUMPKIN: Maybe I could suggest that everything that we have raised are pertinent areas that we need to address in our document and audiences that we need to speak to. One could argue that the metaphor of the dimensions may not necessarily fit.
MR. BLAIR: Well, maybe we have lost track of why we did that, and if I recall, the reason we used the dimensions was because of a way to represent the overlap. There was a certain amount of data that was commonly used by all of these different constituencies, but they used it or looked at it from different perspectives. I thought that was a very valuable thing to try to communicate. So I would hate to lose it.
DR. LUMPKIN: Yes, but I think that we kind of morphed into it, because -
DR. STEUERLE: I was going to say we went through two years worth of discussion.
DR. LUMPKIN: The first - one of the placeholder terms that we had for dimensions was views.
MR. BLAIR: Right.
DR. LUMPKIN: Because what we wanted to do was stay away from it being a program, a thing, but really talking about if it is going to work it needs to work from this approach. In other words, are the people - is it going to meet the needs of individual people?
I’m not sure - and looking at the time, maybe, Bill, you want to jump in first - if we can tease all of this out, but the inability to decide whether or not each of the candidates are a dimension really doesn’t need to impede us in moving forward and -
DR. STEUERLE: Can I just ask - I hate to do this, but could you take me back to the first question? For what - I mean, we all can come with our crossing VIN diagrams and define things differently. Tell me what the basic - what is it - you want to achieve by laying out these dimensions? You’re not changing the structure of Bill’s eight categories anywhere, right?
MR. YASNOFF: Actually, what I want to say relates directly to that, and that is I think that - and I wasn’t here when this report was written, but I have read it quite a few times - the original report - and what I have inferred from reading it is that the purpose of these dimensions was to help communicate the concept, and so I think that, in revising the report, that a key objective should be to further improve the communication of the concept, and, in fact, today, this is now - let’s see - almost, well, two-and-a-half years after the original report, and we know much more about this and what needs to be done, what obstacles there are and so on, and I think that the richness of that complexity should be reflected in the report, and so, specifically, we have a number of stakeholders, and I’m not sure if it is worth arguing about which stakeholders get their own dimensions, but we could certainly make a list of stakeholders, and, then, in terms of issues that need to be addressed, in terms of the long-term strategy, which is what we are getting to in this next report, I would reference back to the recommendations that - the categories of the recommendations that came out of last year’s meeting, namely, how is this going to be managed? What are the enablers that are needed? How is it going to be implemented? And maybe there are some other things that need to be discussed, like how is it going to be paid for?
So I would suggest, rather than trying to take the prior framework, which was very visionary, that helped to communicate the idea, that was very helpful, has created a lot of momentum and try to tweak it that we take, now, all the information that has been discovered and recognize and acknowledge the additional complexity and try to communicate clearly that complexity in laying out a long-term visions, rather than spending a lot of time trying to figure out which stakeholders get their own dimensions and - you know -
I think we could make a list of stakeholders that’s pretty comprehensive. I think we know what the enablers need to be. I think the management issues have been made very clear, and I think what we need to think about is what should be the plan for moving it forward, what are the intermediate steps and so on, rather than these issues that really are already well defined.
MS. DIAMOND: Yes, I actually was going to agree with much of what Bill said - just add something to it.
I do think that it would be very useful to drill down on the NHII in a way that is different from the initial report that creates, not necessarily an architecture, but a functional model. What should it look like and what are the key components of it, which is critical to answering how does it get done and what do we need to do? And maybe that is a way to begin to create yet another visual for it that incorporates all of the potential users of it and all the potential enablers of it in some visual model.
I think the visual is powerful, but I do agree with you, I think we need one that looks - that says, and this is what it looks like, because what you want is the stakeholders to see themselves in the NHII, not necessarily as waiting for the NHII or retrieving - or, you know, getting something from the NHII, but as part of the model of what the NHII is, and as I think about research - and I had a conversation with Ken before he left - it is a perfect example of so much groundwork is getting laid, so much infrastructure is getting built and that needs to be viewed as a piece of this, not necessarily as a satellite.
MR. BLAIR: Kelly, this is Jeff.
MS. DIAMOND: That was Carol. Sorry.
MR. BLAIR: I’m sorry, Carol. Oh, then, Carol, I guess you were not familiar with our NHII discussion in January -
MS. DIAMOND: No.
MR. BLAIR: - where we suggested that there be a series of models to define the NHII in greater depth for what it would look like seven to ten years from now, and we were trying to use the word models, because we want to go beyond what the vision is -
MS. DIAMOND: Yes.
MR. BLAIR: - which - the original report articulated the vision, and we didn’t want to go all the way to a detailed architecture, so we felt like sort of the next step would be models, and we felt like some of it would be like an information model, not a technical model, but an information model, a legal model, a model of the users, a model of the values, you know, that we would be going by, the principles and values that we would be going by, and probably several other types of models. Is what I described what you were trying to say?
MS. DIAMOND: Much more eloquently.
DR. LUMPKIN: So as we are -
MS. DIAMOND: Sorry I missed the January meeting. (Laughter).
MS. DEERING: Are you free in June?
DR. LUMPKIN: Where do we go from here?
I think that we have identified that there’s some key stakeholders that we want to flesh out how this ought to speak to them. What is it that they have to offer? What is it that they have to gain from this vision of interconnectivity interchange of data?
SPEAKER: What are the rights?
DR. LUMPKIN: And what are their rights? What do they have to offer? What are their benefits and what should their rights be?
DR. STEUERLE: Can I suggest that maybe the issue you are addressing is not one document fits all? I mean, when I go to conferences on health, I put at the top of my vita the latest thing I did on health. When I go to conferences on tax, I put on the top of my vita the latest thing I did on tax. It’s the same vita, but I reorient it a little bit differently.
Maybe the question isn’t that you get one document that is going to sell to everybody, but that, at some level, there’s a question for this committee about marketing what it does. So if you want to go to insurers, you may not - you know - to try to figure out - you’ve got this exact document that is going to sell to insurers what they want and everybody else may be not the trick. It may be you need just a cover page which says, and insurers really fit into this - this way, and maybe - I don’t know whether everybody’s picking up one document and being sold on NHIIs.
DR. LUMPKIN: No, but I think what we want them to do is be able to look in the document and find something that speaks to them.
DR. STEUERLE: Right. But I’m saying you’re asking a marketing question and maybe it’s not a one-document question.
DR. LUMPKIN: Well, no, but I think, in your analogy, anyone who wants to look in there and see your - knows that you have done stuff in economistics areas. They can find that in your CV.
DR. STEUERLE: Right. And Bill suggested a way to handle that, at least - you know - you have a - document to start with, but I think you’ve got a bigger marketing issue than getting one document right.
DR. LUMPKIN: So how do we get there from here would be at our next meeting is that we would spend time going down the stakeholders list and answering those questions, because whether we do a marketing approach or whether we include them all in the document, that is going to help us flesh out some of the materials that we are going to be looking at, this document we are going to start preparing at the end of the year, and it will also, hopefully, identify the GATS(?) - thank you - that we may want to conduct hearings on, where if we feel fairly comfortable in one arena, we may decide we don’t want to do hearings. Others, we may want to invite purchasers or payers or vendors to say, you know, what would you need to hear? Or researchers, particularly researchers we know for sure we want to do, but what would speak to you?
MR. YASNOFF: I would argue that the place to start, in terms of defining this long-term vision is to develop a comprehensive set of requirements, things that we will - capabilities that we -
MR. BLAIR: Bill, you’re breaking up a little bit.
MR. YASNOFF: I would argue that the place to start is to develop a set of requirements, a set of capabilities that we will have when NHII is completed that we do not have now and that we could - for the stakeholders that we have already heard extensively from, we can make a list of those requirements and ask for comments, and from the stakeholders we haven’t heard from, we can bring them in and say, well, what do you think are your requirements? What are your expectations?
And, then, we have essentially said - we are starting our long-term vision by saying this is where we are going. We are going to a place where we are going to have these 48 capabilities that we do not have now, and, then, we can begin to address the issues of how do we move in each of these key areas in terms of management, enablers, implementation, whatever the areas are going to be, how we move from where we are to get to these capabilities. What are the intermediate steps? What has to happen first? What has to happen second, to whatever level of detail we want.
MS. DEERING: Since I am sort of task oriented and yet also a lumper as well as a splitter, it does seem to me that perhaps you could charge staff before June, because there’ll be nothing lost, it seems to me, to do this ever so succinct, bulleted exercise for at least research and maybe policy with a few items to flush out what are the information components, what are the overlaps, et cetera, in ways that if you look at - I think it’s page 16 in the chart, it shows the example of - okay. Like where do the clinical guidelines go? No more than one page each or a half-a-page each, perhaps. Just something, because I think it could be valuable, and if we just pick, say, research and policy for starters, I think staff, you know, can probably get that started.
The other thing is I know, Jeff, you have said for months now that you would like to see us to move on to models, and I don’t know whether Jeff - if there’s anyone who could take a stab at - I don’t know what you mean by an informational - I have no idea what it is going to look like.
MR. BLAIR: Let me indicate that I agree with Bill that a prerequisite to the development of the models would be the requirements. We have to define the requirements first.
MS. DEERING: Okay. Jeff -
MR. BLAIR: I think that after we identify the requirements, then, some of them, it will be helpful for us to make models, and some of them, we won’t need models for. We could wind up saying, okay. What is the roadmap to get to this group of requirements, but I do agree with Bill’s modification that we need to identify the requirements first.
MS. DEERING: We’re coming deep out of the HL7, EHR functional model and requirements statement. I just wanted to share sort of a conceptual equivalent of what they went through and what they eventually came out with. They have certain broad categories for functional capabilities. Within those broad categories, they’ve got some subsets of capabilities, and they are stated at a very high level. Is that the sort of thing that you’re thinking of getting to?
MR. BLAIR: In a sense, I think that could be one of the models, because - and that is a functionality model of an EHR.
DR. LUMPKIN: But let me suggest that what we did in our first report by defining the dimensions is we actually started talking about some of the requirements within three key stakeholder groups, and -
SPEAKER: Right. But at a very general level.
DR. LUMPKIN: Very general level, that -
DR. STEINDEL: When we first started doing it, we did not talk at a very general level. We talked at very specific levels and worked up to general -
SPEAKER: Scenarios.
DR. LUMPKIN: Right.
So what I am suggesting, because we are running out of time - actually, run out of time - but what I would like to suggest is that we follow through with Mary Jo’s suggestion with the addition of the administrative purchasers/payer arena, and start to - because we are really looking at what is the work that we can do before the July meeting that we won’t have to rework after the July meeting. Because I think we will have a lot more material to work on after that meeting, and fleshing out these three areas, I think, will give us a good start to then go back to this concept of building the requirements from which we will construct the models.
DR. STEINDEL: Do you think we are going to be able to do that in a one- or two-hour meeting in June?
DR. LUMPKIN: The question is can we do that in a one- to three-hour meeting in June? Not necessarily, but we need to all et on the same page, and I think we can get on the page by trying to do that, see if it works for us, and that will better position us for the work that we will do in July and afterwards.
MR. YASNOFF: And so what is the output of that process that you are hoping for in June?
DR. LUMPKIN: The output of the process in June is that we will try to drill down on what we would - lead to the requirements in these three new areas that we are looking at, and we may only be able to get to one of them, but I think we need to kind of re-engage our minds in the process of how we are going to get to what we started off with in developing the dimensions of requirements. How should this - what is the functionality that we think this thing ought to have for a patient in this new future? And we need to think about - in this context, get back in that frame of mind.
MR. YASNOFF: So you want some suggested functions in the research and policy - is that it?
DR. LUMPKIN: Um-hum.
DR. GREENBERG: Meanwhile, somebody - sounds like some staff might do some work on this before that.
MS. DEERING: Well, I think what we can perhaps try to do is if anyone wants to just send me ideas, that’s fine. I think one of the things that would be most helpful is to try and think through what format you want this in. Do you just want sort of a bulleted list for starters?
DR. LUMPKIN: Yes.
MS. DEERING: Okay. What maybe we can do is even start out with as few as a handful of things, just to sort of prime the pump in each of these areas, and start circulating, and you can either shoot everything down, you can build on it, you can build off it. You can do whatever you want, but, at a minimum, we’ll send out three pieces of paper that have some bullets on them and headers that say, what are the requirements for users within this dimension?
DR. LUMPKIN: And let’s use email to kind of get a dialogue going on between now and June.
DR. STEINDEL: And then probably we can work out the system on one of the three at a June meeting.
MR. YASNOFF: And when I have the results of the requirements meeting that I held, I will try to organize it by dimension somehow - I’m not sure how that will work - and then I will distribute that, and that will be substantially before June.
DR. LUMPKIN: Right. And it may not work, in which case we may need to -
MR. YASNOFF: Well, now, you know -
DR. LUMPKIN: If it doesn’t that is important to know, too.
MR. YASNOFF: Whatever those results are, you will have them.
MS. DEERING: But what I like about trying to hang the requirements or feed them into the dimensions just for now is that, again, it is still - it accomplishes the combination of the - dare I say - more technical need to get to a requirements statement with the communication purpose of allowing the users within certain sectors to see it and what it means for them.
DR. LUMPKIN: Um-hum.
MS. DEERING: So it is just a different framework for looping the requirements.
MR. YASNOFF: I think it is important to have - to have hearings where we let the people from these various stakeholder groups say, well, you know, we don’t care about that requirement, but here are three others -
SPEAKER: Exactly.
SPEAKER: Absolutely.
MR. HOUSTON: Let me ask you a question - if we are doing this conference in July, isn’t that sort of a surrogate for just that or am I - you don’t think -
SPEAKER: No.
MR. YASNOFF: No, that conference is not a venue where you could get requirements. I mean, it’s more of an action agenda. I mean, there undoubtedly will be recommendations at the conference that say we should get requirements, but you are not, in a meeting like that, going to get any. You might by accident, but it just - with 1,000 people, it’s hopeless, and, actually, the whole issue of generating requirements is very complicated and requires a lot of time and small groups and a lot of recycling of information, because it is easy - I mean, what typically happens in these processes is you work with users and you work carefully, you spend a lot of time, you get the requirements and then you build the system, and you say, one of our key requirements is missing, because nobody thought of it.
So it’s, I think - but in a big meeting like that - I mean, if I thought I could get requirements at that meeting, I’d be doing it.
DR. LUMPKIN: We are adjourned.
[Whereupon the meeting was adjourned at 2:06 p.m.]