Hubert H. Humphrey Building
200 Independence Avenue,
S.W.
Room 505-A
Washington, D.C.
Report of Subcommittee on Populations - Dr. Iezzoni
Second Generation Internet for Health Applications - Ms. Griffith
Information Systems Dealing with Public Health Infrastructure - Mr. Nicola
Quality Improvement System for Managed Care - Ms. Page
Report from the National Center for Mental Health Statistics - Dr. Lurie
Report from the Work Group on Computer-Based Patient Records - Mr. Blair
Report from the Subcommittee on Standards and Security - Dr. Lumpkin
Report from the Subcommittee on Privacy and Confidentiality - Ms. Fyffe
Report on National Health Information Infrastructure Work Group - Dr. Friedman
Report on Workshop on Public Health and Health Services Research - Ms. Greenberg
Future Meetings - Dates and Agendas
DR. LUMPKIN: Good morning. We are going to start the second day of our meeting. Just before we get started with introductions, we have a slight modification to the agenda.
Our presenter for 10:00 o'clock, Bud Nicola, is coming in from the CDC. As I understand it, there are a couple of alternative scenarios that may have happened.
One is that there may have been a major outbreak requiring Bud to stay there. The second is that he had a mechanical problem with his airplane.
I think the mechanical problem is what the deal is, and so, he has told us that he will be late. If it is agreeable with the various committee chairs, I will ask for committee reports starting at 10:00 o'clock, and we will move those up to that item in the agenda.
Also, depending upon how long it takes us for those committee reports, we may move up some of the other earlier activities, if we have room to do that.
As usual, this meeting is going out into the world of cyber space. So, we are going to start out with introductions, so those who are out there can at least hear our voices and know who is here.
My name is John Lumpkin. I am a member of the committee, and also from the Illinois Department of Public Health.
MR. SCANLON: I am Jim Scanlon. I am executive staff director for the committee, and I am located in the HHS Office of the Assistant Secretary for Planning and Evaluation.
DR. TAKEUCHI: I am David Takeuchi, member of the committee, Department of Sociology, Indiana University.
MS. WARD: Elizabeth Ward, member of the committee, from the Washington State Department of Health.
MS. FYFFE: Kathleen Fyffe, member of the committee, work for the Health Insurance Association of America.
MR. GELLMAN: I am Bob Gellman. I am a member of the committee, and a privacy consultant in Washington.
DR. IEZZONI: Lisa Iezzoni, Harvard Medical School.
MR. STREIMER: Stewart Streimer, Health Care Financing Administration, liaison to the committee.
DR. STARFIELD: Barbara Starfield, member of the committee, from the Johns Hopkins Medical Institution.
MR. BLAIR: Jeff Blair, vice president of the Medical Records Institute, and a member of the committee.
DR. NEWACHECK: Paul Newacheck, member of the committee, from the University of California at San Francisco.
DR. FRIEDMAN: Dan Friedman, member of the committee, Massachusetts Department of Public Health.
MS. COLTIN: Kathy Coltin, member of the committee, Harvard Pilgrim Health Care.
DR. BRAITHWAITE: Bill Braithwaite from Health and Human Service, Office of the Assistant Secretary for Planning and Evaluation, staff to the committee.
MR. HITCHCOCK: Bill Hitchcock, ditto what Bill just said.
MS. ARAKI: Lynette Araki, National Center for Health Statistics, staff to the committee.
MR. CONWAY: Tom Conway, American Medical Association.
[Other introductions made off microphone.]
DR. AMARO: Hortensia Amaro, professor at Boston University School of Public Health.
DR. LUMPKIN: Thank you and welcome. I did want to -- Lisa, what school are you at?
DR. IEZZONI: You mean, the big university in Boston?
DR. LUMPKIN: I don't remember it being pronounced Harvard. I thought it was Hah-vard.
DR. IEZZONI: I guess there might be some dispute about that. I am sorry to confuse you at this hour of the morning, John.
[Laughter.]
DR. LUMPKIN: Is Jerry Sheehan here?
MR. SCANLON: No, Jerry will be here about 9:15.
DR. LUMPKIN: Okay, we are going to perhaps proceed to the reports. Let's see, would you like to start, Lisa?
DR. IEZZONI: I would be happy to go because we finally have a charge that we are hoping the committee will vote on.
DR. IEZZONI: This is the subcommittee on populations. You can see the charge in tab E. Immediately after the charge is our work plan.
It basically has been edited, in a very lengthy process that has gone on for months and months and months.
We would like the full committee to vote its approval of it this morning. Basically, there will be no new surprises in the work plan.
We are continuing our work on Medicaid managed care, finishing our report on the insular areas. We are planning to have a new initiative over the next 12 months on post-acute care, although the exact name of this is still being negotiated.
We are continuing to monitor survey integration, and people saw the letter in I forget which tab it was, recommending that slates, for example, be put forth as a potential vehicle for monitoring the progress of the CHIPS programs around the country.
We are continuing to monitor the race and ethnicity reporting issues, and bringing up population- specific issues relating to the HIPAA standards implementation, to the attention of the full committee.
I would like a motion to maybe vote on our charge and work plan.
DR. LUMPKIN: Actually, that is my job. I would like a motion to vote on that charge and work plan.
DR. IEZZONI: Thank you, for clarifying what my role on this is.
DR. LUMPKIN: If you would like to make that motion, I would be happy to here it.
DR. IEZZONI: May I please make a motion that we vote on our charge and work plan and that we approve it.
DR. LUMPKIN: It is moved. Is there a second?
MR. BLAIR: Second.
DR. LUMPKIN: Second from New Mexico. Okay, is there a discussion on the work plan and charge?
Those in favor say aye?
[Voices heard in favor.]
DR. LUMPKIN: Those opposed, nay?
[No voices heard.]
DR. LUMPKIN: Abstentions?
[No voices heard.]
DR. LUMPKIN: It carries; great.
DR. IEZZONI: What I would like to do, for the remainder of my few minutes, rather than me talking, is to actually ask Kathy and Dan to give us a sense of what is going on in the working groups that are largely related to our subcommittee.
Kathy's is the working group on quality and Dan's is the working group on vision. Dan, do you want to start?
DR. FRIEDMAN: Sure. As members of the committee probably recall, around a year ago, we embarked on a three- fold collaborative process, together with NCHS.
The aim of it was to try to define a vision for health statistics 10 to 15 years in the future, and then ultimately, an identification of how NCHS fits into that vision, and essentially a road map for NCHS to follow in helping to achieve that vision.
The process consists of three parts. One part is a series of commissioned papers. We -- meaning the committee together with NCHS -- has identified authors for four of those papers.
I am personally very enthusiastic about those four authors and those four papers. One is Jennifer Zellmar from the Canadian Institute of Health Information, who is going to be looking at models of health statistics systems in other countries. I think that is going to be extremely useful.
There are an awful lot of other places in the world that does it in a much more coordinated and rational way than we do.
Another paper is going to be authored by Nora Lareusse(?) and her colleagues from the University of Manitoba.
If folks are getting the impressing that I am sort of a Canadaphile, it is because I am, increasingly.
That paper is going to focus on models of the health care system, developing a model of the health care system, that can be used in trying to assess basically what are the pieces that are missing from our health statistics system.
Nora LaReusse and her colleagues, a couple of years ago, wrote an article that was somewhat related to this in Millbank Quarterly, and their paper is going to build upon that.
There is also going to be a paper written by Rick Cronik at University of California, San Diego, Medical School on what were met and unmet health statistics in the health care reform debate.
Another paper will be by Lorraine Clearman on met and unmet health statistics needs in the children health insurance program.
The point of those last two papers is trying to identify what we needed, but what wasn't available, and what we need to build on in the future.
There is another paper that we are still searching for an author on, and I hope to look around the audience and find a volunteer, on what we have learned from health statistics systems that have withstood the test of time; robust systems like communicable disease, like vitals, like HIS, which have been around for 40 to 150 years, and are still providing some pretty useful data, and have, somehow or another, provided that over time. Those are the commissioned papers.
MS. FYFFE: Excuse me, what is HIS?
DR. FRIEDMAN: Health Interview Survey.
DR. IEZZONI: National Health Interview Survey.
MS. FYFFE: A hundred and fifty years?
DR. FRIEDMAN: No, that has been around for around 40 years.
MS. FYFFE: What has been around?
DR. FRIEDMAN: Statewide vital systems in at least some of the states, at least in one state, have been around for 150 years.
So, those are the papers. There are going to be a couple of expert group panels focus group panels, and we are still not sure that we are ever going to come to a real meeting of the minds or consensus about those panels.
I think what we are going to really have is essentially an over-laying of interests. Sort of personally, I hope that my interests in this get laid, if not on top, not at the bottom.
Part of the interests are trying to identify factors in the health care system that we are going to need to be planning for in terms of health statistics five, ten, 15 years out.
That is one type of issue that will be dealt with. Another type of issue that will be dealt with, I hope, is some attention to what is health statistics as a field. Is health statistics a field. Is it just a phrase that the U.S. Congress has conveniently used. Is it part of public health surveillance. Does it stand apart from health surveillance. What are its purposes, et cetera, et cetera.
Another issue that may be addressed in the focus groups is how do we evaluate health statistics systems.
My own interest in this is as somebody who -- I run these things. Essentially, I run health surveillance systems.
CDC has done a lot of work around developing criteria for evaluating health surveillance systems. It is very useful work for people who actually run surveillance systems. There isn't anything like it around health statistics, and I think that would be useful.
The focus groups are going to be held hopefully in January and February. I hope that the membership reflects a broad range of people, both practitioners as well as users, both people in Washington as well as people outside Washington, who actually collect and use the data for program development.
Then finally, there is going to be at least one workshop put on by the Committee on National Statistics that will probably be late spring, early summer.
At this point, I hope that it is going to be early summer rather than late spring.
That is essentially going to build upon the results of the focus groups. It is going to build upon the results of the commissioned papers, focusing on what are the issues that we need to be thinking about, as we think about developing health statistics systems 10 or 15 years out. That is where it is.
DR. LUMPKIN: Questions?
DR. STARFIELD: I have a question. I guess one of the problems is to define the field of health statistics, the activities of health statistics.
We heard that there are over 200 sources of data for the 2010 objectives. I wonder whether it might be useful to have a compendium. The ones in the 2010 are mostly the governmental ones, so to those would have to be added lots of others.
At least, you know, to have something everybody could look at to say, this is what we think are current health statistics. This is where they come from.
DR. FRIEDMAN: I think that is a good idea, Barbara. I always get confused by inductive and deductive.
If we can't abstractly define what health statistics is -- and we don't seem to be able to -- then I think we are left with saying, well, maybe we can agree upon the specifics, if we can't agree upon the abstract. Maybe we can agree on the specifics; I am not sure.
DR. STARFIELD: That list that we were given yesterday seems to be a good start. We certainly can add to it.
MR. SCANLON: A follow up to Barbara, Barbara, they probably will be available by the time of the workshop, the update of the HHS data director, which will include health and human services, all of our major data systems, at least federally sponsored. That may help as a back up.
MR. BLAIR: You may already be doing this, but I would think that one of the directions that we may want to take health statistics would be the direction that would be supportive of the move toward a health care information infrastructure, a national health care information infrastructure.
From that standpoint, if you haven't done so already, you may want to take a look at many of the articles that the health care information infrastructure work group is pulling together from the work of other nations -- the European Union, Canada, et al.
They seem to be focused -- admittedly, their health care is a little different because there is more nationalized health care.
They are looking at statistics and information to support their health care objectives which, in some ways, is a little bit broader than the way we look at it in the United States, because we still tend to think of ourselves as private sector directed. That may be useful, if you haven't done that already.
DR. FRIEDMAN: Jeff, I completely agree. I think the work in the United Kingdom, work in Europe, Canada, Australia, is directly germane.
I also think that, in some ways, the health information infrastructure, as we are beginning to conceive of it on the committee, is where we really need to end up being.
I think the distinctions between health statistics and health surveillance, et cetera, et cetera, ultimately over time, are just going to wash away. I completely agree with you.
DR. LUMPKIN: Other questions or comments?
I just have a brief one. One, I was glad to hear the addition of the concept of infrastructure. I do think that needs to be addressed in anything that looks at the future.
A second is to make sure that the committee begins to evaluate what I will call the third wave of the federal/state relationship with the information systems related to health statistics.
The first wave was, here is a system, and if it is a square peg in a round role, you just make it fit.
The second wave was, here is the money; you build your own system. That is the current wave that we are in. Unfortunately, every state is building their own system differently and the money is being spent over and over again.
I think that technologically we are ready for the third wave, which is, here is a core of a system, and here is the money to make it fit into what you are doing.
Certainly with all this technology and other things, that we ought to be ready for the third wave. We just aren't doing it, and that is something that maybe ought to be looked at.
DR. FRIEDMAN: In my tradition of continuing to shamelessly pander, I completely agree. If we can get down to that level of specificity in this, I think it will be extremely, extremely useful. I think that is where we really need to end up.
DR. LUMPKIN: Great; thank you. We will take the second work group report, and then we will move into our first agenda item.
MS. COLTIN: Okay, that is me. The work group on quality met really for the first time yesterday. We spent our time discussing our charge and primarily our work plan.
Our charge really is to try to identify the data needs and gaps for measuring and improving the quality of health care, and to try to lay out a map for information systems to support quality measurement and improvement.
In all likelihood, we will build very closely on the road map that was developed by NCQA, but not see that as a limiting factor in our work.
As we talked about our work plan, there were four items that we would hope to accomplish over the coming year.
Two of them relate to working very closely with the full subcommittee on two major issues, one which they are completing on Medicaid managed care, and particularly working on the chapter of that report that would relate to what we learned about the data needs and gaps in measuring quality of care for the Medicaid population in managed care, and some recommendations about how information systems, data systems could be improved to try to meet some of those needs.
The second relates to the work that is really just beginning in the post acute or continuing care area, that will be undertaken by the subcommittee this year, and to try to lay out, in conjunction with the full subcommittee's work plan, a series of sessions that would deal specifically with measuring quality in some of these continuing care settings.
It is also not simply looking within the settings, but looking at continuity of care across settings.
Those are the two initiatives that we will be running, really collaboratively, with the full subcommittee.
Then the other two would relate to having a -- I don't know if you would call it a hearing or session, but we would like to bring in individuals who have been involved with measuring quality, to talk with us about some of the limitations and frustrations that they faced, due to either poor quality or unavailable data that would be necessary, or very high cost data collection methods that could potentially be improved with investment in the information systems architecture.
So, we would use that as a sort of springboard for the broader portion of our charge, to identify data needs and gaps.
Then we will try to take the work from those three initiatives and fit them into the beginnings of a road map for improving information systems.
We envision that work on that last piece will take us into some collaborative efforts with the standards and security subcommittee, and perhaps the work group on computerized patient records as well.
There will be a lot of collaborative work, I think, that will go no between this work group and other subcommittees.
DR. LUMPKIN: Jeff?
MR. BLAIR: Could I echo this? I really feel that we have an opportunity here. For the first time, we are focusing it at both ends of the spectrum.
I am going to use a name that hasn't been approved yet, but if our work group is data standards for patient clinical information, yours is focused on quality and the ability to measure performance and quality, in a sense, you are coming down from the top, saying this is the kind of information we need.
Our group is struggling from the bottom up trying to say what kind of standards do we need to meet the needs.
You are, in a sense, one of our customers ultimately, but you are winding up organizing and defining those needs in a way that may never have been done before, but which has long-term implications for the kind of health care information infrastructure that we want to create.
I know our work group is going to be extremely interested in the data that you define as necessary, both in terms of quality, in terms of quantity, in terms of which data elements are needed, in terms of modifiers and specificity of that information that is needed to be able to measure quality and performance. Yes, we very much look forward to working with you.
MS. COLTIN: Thank you.
DR. LUMPKIN: Other questions or comments? Thank you.
We are going to move on. I have one other item that I wanted to raise, that came out of the executive committee discussion on committees and committee membership.
Many of us have interests that go beyond the work groups that we are on.
You may have noticed that we have tended to split almost our membership into two camps, those who are on the population committee and those who are on the standards committee.
People tend to defect from one to the other all the time, but they tend to meet in conflicting time slots.
We are entertaining the concept of what is called a corresponding membership, which means that if there is a committee that you are interested in, you can get on the mailing list and the list serve for, although you wouldn't count as a member for quorum and other reasons.
If there are committees that you believe you want to follow what is going on in that committee, you could notify Marjorie or other staff. So, you will be on the mailing list, get the information, but not necessarily be an official member of that committee.
We are behind schedule but ahead of schedule. For our first agenda item on the second generation internet for health applications, we have Jane Bortnik Griffith from the National Academy of Sciences.
MS. GRIFFITH: Good morning, thank you.
DR. LUMPKIN: Good morning, and welcome.
MS. GRIFFITH: Unfortunately, Jerry Sheehan, this morning, is unable to be here. But I am pleased to have the opportunity to meet with you and to tell you about our new project dealing with medical applications on the internet.
I think it is a very exciting project. We have already had our first meeting, which has been, I think, quite excellent and gotten us off to a good start.
What I hope to do this morning is to provide you with an overview of the project, some information on where we are heading, what some of the key issues are, and then perhaps we will have an opportunity to get some input from all of you, in terms of what you see as key issues.
Actually, I might pass these around. This is a description of the project. The committee membership is listed on the back.
There are some familiar faces here, and I know there are a number of people that Jerry has had an opportunity to work with previously on an earlier study that we did, that I think many folks here are familiar with, for the record.
I think everyone has copies, but just in case, I brought a few extras.
This is really a follow on study to this earlier effort. It has been requested by the National Library of Medicine.
It relates to NLM's interest generally in high performance computing and, in particular, to the development of the next generation internet and the possibilities for using that capability more effectively for medical applications.
Don Limberg(?), himself, has particularly been interested in this effort. The question he always asks is, would the internet be different if the health committee were involved in its development, rather than it being dominated by physicists and computer scientists per se.
What kind of characteristics might it have if, indeed, there were a greater input from the health community into its design.
I might say also that the computer science board did an earlier workshop in 1995, which was the precursor to this effort, for the record. That also has been sort of background for us in terms of this particular issue.
I think another important activity that is going on related to this that folks may be aware of is the President's Information Technology Advisory Committee came out a few months ago on the need for federal investment in basic research in computer science.
They identified a number of areas that they thought were particularly important, including high performance computing and scalable infrastructure for networking and for information, including data bases and the like, as well as a particular emphasis on software.
That, of course, folds in very nicely to some of the kinds of issues that we will be looking at.
The general purpose of this study is to identify what the technical needs are of the health care and biomedical communities regarding the internet and, as I said, particularly looking at the development of the next generation internet, to see what can be done to facilitate more routine use for the medical field. Such things as increased band width, and particularly band width on demand, are important elements that are being looked at.
Another area is quality of service. As we all know, the internet was created absent quality of service.
There is the issue of how we then take this infrastructure and begin to develop audio service capabilities that are so important in certain kinds of applications.
Obviously, security is a particular concern that relates to all of these application areas. Accessibility, on the other hand, is likewise something that is extremely important.
The committee is looking broadly at the provision of health care, public health, dissemination of medical information, biomedical research, medical education, the whole range of issues which come under the purview of the National Library of Medicine and their particular interests.
We are looking at it from the standpoint of the next generation internet pre se, because the next generation initiative is really designed to vastly expand the band width capability, the magnitude of bit rate that is accessible.
Having that expanded band width will now provide opportunities that previously didn't exist.
As I said, one of the interests is how to build in capabilities that will support health care specifically.
To have an influence on that NGI process, it is important to have some very good examples of what the applications are, what the specific technical requirements are associated with those particular applications.
What is needed, for example, for tele-imaging or tele-consultation or collaborative research environments, et cetera.
So, the goal here is to, in fact, identify those applications and then identify the specific technical criteria that need to be built into the network to accommodate them.
There are a number of visions that people have these days of what might be possible, and of course, some of them are already happening in certain respects.
The notion of patients downloading from the internet educational videos, so that when they return home from surgery and they want to make sure that the care they have subsequently is appropriate, that they can have access to that information.
Students practicing surgery in virtual reality is, again, something that is experimental now, but increasingly is a possibility.
The manipulation of reading molecules by researchers, and the possibility of doing this remotely using collaboration among a number of researchers on common instrumentation.
Obviously, consultations of various kinds, sharing images, and things of that nature, allowing for access to telemedicine for remote care in various settings.
In addition, monitoring the patients remotely and things of that sort. Of course, particularly of interest to this committee, is the linking of health records that would be associated with this kind of activity.
Now, if one thinks about those applications, there are currently a number of limitations to the existing infrastructure.
As I mentioned earlier, band width on demand just doesn't exist and priority access to the net doesn't exist.
So, you have to stand in line along with everybody else's messages and applications that are streaming across.
Efforts are underway to begin to provide that kind of ability where you can say, this is a priority application. Shift the band width here for the time being until this is accomplished. That is one of the kinds of things that people are talking about.
Problems with latency, in some applications, latency just doesn't matter. Obviously, in most medical applications it does matter.
Particularly in terms of imaging technologies and capabilities, remote monitoring, certainly anything in terms of using remote instrumentation, latency is a very critical issue that needs to be dealt with.
MR. BLAIR: Could you describe latency just a little bit, just to make sure we understand what that means.
MS. GRIFFITH: The notion that from the time the image leaves one location and may get to the next, there may be a delay in the transmission.
It is not really real time, and the need for real time capabilities is something that is particularly important in medical applications.
I already mentioned quality of service, which again, is critical to be able to know that the system is not going to go down; that there is back-up; that there is reliability; that there is robustness.
Robustness and reliability are not words that one can generally apply right now in many instances in terms of the net.
Interoperability among networks is another issue that is obviously important and needs to be addressed, and also the concern about what, in the telecommunications world, they refer to as the last mile.
You can have all kinds of wonderful capabilities and extensive band width between two points. The reality is, if one wants to actually reach out into communities, into homes, into rural settings, the last mile where you may not have that high band width, you may not have the speed of service or the capabilities that go along with it, automatically means that you can't make use of the high end applications.
If, in fact, health care services are to be provided, as many would envision, to areas that are remotely located to people in the home, the last mile issue is a very significant issue to be addressed.
The project, as I said, has already begun. The committee was put together last summer. I think, as I said, you will see on the back here the list of committee members.
It is a combination of health care professionals and information technology professionals. Ted Shortluft(?) is chairing it from Stanford University. I suspect many of you may know him.
The idea is to bring together the expertise of these different communities to work collaboratively in addressing these particular issues.
We held our first meeting in September, during which we received what we call the committee charge from the sponsoring agency.
Don Limberg came and outlined what he hoped to see out of the study. The committee had an initial discussion and identification of what some of the issues are that they would like to address.
We will be doing -- again, as the handout indicates -- a series of committee meetings over the next nine months ago, and a series of site visits as well.
Some of those committee meetings will have sessions that we call open sessions, where we will have outside speakers and the public is invited to attend those portions of the meeting.
We will be, for example, in the March meeting that will be held here in Washington, we will try to involve people from federal agencies to come and talk to the committee about what their particular interests are.
In December, the committee will be going out to California to do a series of site visits at UC San Francisco, Kaiser, Stanford and NASA Ames, to look at a variety of applications in telemedicine and remote surgery and the like.
What they want to be able to do is get both a lot of input from a variety of people and go around and actually visit and see what kinds of experimental things are being done in various locations.
One of the issues is that there are a lot of interesting experiments going on. They are on proprietary networks. The question is, how can you migrate those things off of proprietary networks and onto the internet or the next generation internet.
How can you make them cheaper if you make use of more universal infrastructure. Also, the goal is to look at what is being done on the internet today, what kind of capabilities people are making on various web sites, and what more can be done in this area.
The committee sees a number of both short term and long term issues. One of the things that they hope to do in the study, in the report, is identify what can be done now and then what will take additional resources in order to do later.
That is one of the things that people commented about for the record, that it had in it some specific recommendations that could be implemented immediately and others that required more long-term effort.
So, that is one thing that they hope to do. The other thing is that they are not only going to look at the sort of big ticket items, the things that require the most extensive capabilities, the highest band width, et cetera, but they hope to look at all kinds of transactions that might be possible using more limited capabilities.
As I said, what we would like to do is get as much input from the community as possible. Jerry's phone number and e mail address is listed here on the handout.
Also, I should mention that on the National Academy of Science's web site, which is www.NAS.edu, there is something called current projects, and you can get updates on the study by checking the current projects site.
I welcome the opportunity now to get some feedback from the group.
MR. BLAIR: Help me understand a little bit. Right now, when people refer to the internet, sometimes they are referring to internet technologies, and sometimes they are referring to the internet as the network.
There are many organizations that have developed intranets, which use internet technology, but it is a controlled network where you could have greater band width, where you could have greater security.
Could you clarify, sort of break off, the topics that you listed as problem areas that the second generation internet would address.
It included everything from security to performance to reliability to accountability, on and on. What portion of these issues are pretty much solved by intranets, and which ones, even with intranets, do we have internet technological deficiencies, where just going to an intranet won't solve the problem.
MS. GRIFFITH: I think that some of the areas such as security and controlling access to information, for example, and designing certain specific capabilities into the system can be done through intranet technology.
It was actually one of the interesting things at the first meeting that was brought out was that, as people were talking about examples that they were aware of everyone said, yes, but isn't that on an intranet.
The notion in part is that it may be more economical to move away from having proprietary intranets and making use of more, as I said, generic capability.
Also, the notion that one could probably -- it would probably be rather expensive to have all the capabilities that would be built into the backbone of a next generation internet in an internet kind of configuration.
I think that some of the capabilities, certainly, can be addressed in the context of keeping it internal, to so speak, but obviously, when one gets to such things as delivery to patients at home, making things more publicly accessible, then that need to rely upon the internet per se, the more public internet, becomes more of an issue.
MR. GELLMAN: Good morning, Jane.
MS. GRIFFITH: Good morning, Bob.
MR. GELLMAN: Is this going to be another one of those gee whiz studies, proposing all kinds of privacy invading technologies and data linkages with a paragraph in the back that says, gee, we ought to do something about privacy?
MS. GRIFFITH: Again, at the first committee meeting, this was clearly one of the top items on the agenda.
I should mention that they don't want to do this all over again. Obviously, they are going to rely on the record as the baseline for the privacy issues.
One of the things that I think there is a lot of focus on, which may apply specifically to privacy is security.
That gets back again to the internet question. One of the reasons that a lot of people mention they stick with internets is the security issue.
The desire to be able to move beyond that requires the ability to have security capabilities that will assure privacy and will control access by individuals, in terms of limiting it only to people you want to have access to it.
There is a great deal of sensitivity, I can assure you, on the part of the committee to these issues.
Also, we do have one committee member who has served on both of these studies, who is participating in this one as well.
MR. GELLMAN: With respect to security, given all the wars that are going on today -- the political wars -- going on today and the limitations on the use of encryption technology, do you anticipate that this group is going to suggest that we need higher encryption standards for medical information than for other kinds of information?
MS. GRIFFITH: I can't prejudge what the committee's recommendations are going to be a year from now. That is going to be up to the committee, to make that decision.
All I can say is that I am sure that they will address all the technical capabilities that are required to ensure protection of the information.
MR. GELLMAN: One last question. How do you think you are going to address priority usage on the internet without setting off a range war?
MS. GRIFFITH: People are actually already looking at that issue, because it can be done on an economic basis. In other words, if you are prepared to pay, you can get it. There are firms that are beginning to offer that service.
DR. COHN: Actually, thank you for the very nice presentation. I actually, on Monday, had the opportunity to share the podium with Ed Shortluft. I was talking about the national health information infrastructure and he was talking about the internet issues.
In that presentation, and as I was preparing for it, and as he was talking about sort of the visionary next generation, it occurred to me that this committee has actually been working on something as mundane as EDI standards for the last couple of years.
The reality is that that doesn't even go over the internet, much less anything space age like how we do surgery.
Normally these things are done by value added networks, for a whole variety of reasons.
It did occur to me, as I looked at this charge, that I wasn't sure that -- is that too mundane to be evaluated by this panel or joined by this group?
MS. GRIFFITH: No, I think the committee, as I said, is interested in -- the expression that was used was not just hitting home runs, but in base hits.
What they definitely want to do is look at sort of the whole range and not just the gee whiz. In fact, there was some concerned expressed, that they don't want this to be that kind of thing.
DR. COHN: I am not familiar with this committee per se, mostly with Pete Hack and things like that.
As I looked at the membership, I think it is a wonderful membership. I do think it is a group of academic medical people plus some very good technologists.
What that means is that you are going to have to really go out of your way to really extend yourself to the health care business community.
MS. GRIFFITH: Right.
DR. COHN: Tom Glaser was there, but that is the only one.
MS. GRIFFITH: There was, again, discussion of that at the first meeting. In addition to the site visits, they went through a whole exercise of identifying individuals they would like, and communities and different points of view, and institutions that they would like to be briefed by.
That is one thing that I would really welcome, and I know Jerry wants specific names of organizations or individuals that you believe would be very helpful in that regard.
DR. FITZMAURICE: I, too, want to thank you for a very nice introduction to the committee, and pick up on your comments on the economics.
In the 1970s, when we had an energy crisis, the Federal Government came out with miles per gallon regulations and emissions standards on cars.
During that time, measuring devices got better and better and computers got better and better. You could measure the flows of little bits of gas going through lines without having a big meter and a dial on the top of it, and computers could look at valves in a carburetor so that none of us could work on carburetors any more, like maybe we used to.
I have no doubt that the internet is going to find people with better and better meters so that we can measure the bit flow rates, and that we are going to be charged by maybe the thousands or hundredths of bits that we consume.
We will probably dial up like on 10-10-359 or 10- 10-459, to get the band width of how fast do you want that picture downloaded and that you will pay for it.
Where we see this coming is in efficiency. How can we allocate the growing net, the most efficient uses, and I think that is the priority uses that you were talking about.
We also have a notion of equity. That hits us pretty hard in health care, because health care is more close to a right than access to bits.
Still, as the internet can improve our health care, we have to be sensitive in terms of haves and have nots, in terms of a universal services pool, where we tax those in an urban area to supply band width to rural areas.
Is the committee going to get into not just what bells and whistles will be very good for us in the future, but also how they might be efficiently and equitably allocated to the population, so that we give the population access to the best and the fastest computers and the broad band width where it has high priority uses, and then, can those people afford to pay for something that is very beneficial, but beyond the range of income and assets.
MS. GRIFFITH: I think that clearly one of the areas the community has indicated as an issue to address is the access issue.
There is a lot of concern about that, and that relates in part to sort of the last mile issue. It also relates more generally to issues of equity, as you indicated, and there is certainly a lot of sensitivity to that on the part of the committee.
In addition, I would say that there is an interest in looking at some of the business models. That is one of the reasons they want to hear from information service providers, network providers, a whole range of people of that kind, to find out what the economics will be that will allow different kinds of services to be offered, and how feasible that is to happen, and what time frame.
DR. FITZMAURICE: That sounds like a great committee. How long is your charge? When is the end of your committee?
MS. GRIFFITH: It is 18 months.
DR. FITZMAURICE: Thank you.
DR. MC DONALD: A couple of comments on other comments. One is that EDI, as was just commented, both in X12 and HL7 there is an e mail internet proposal with encryption built in.
In fact, the HL7 is now an internet proposal in conjunction with them.
The second thing is that health care has been sort of the poor step child, health research, in terms of network such of things.
NSF has their own network, DOD has their own network and NASA has their own network. The NIH is one of the biggest research organizations and does not, and isn't really sort of sensitive to what might happen.
The third thing is that communication technology has been disproportionately held expensive. You know, if anybody has talked to any human being on the phone in the last couple of years, you are probably lucky, because it is all chips now.
Chips, we know, get real cheap because computers cost almost nothing. So, the cost is not anywhere what it should be. They double the capacity on fiber optics every year so we can get like billions of bits on something that they put in five years ago to get a million bits across.
The net result is that if we can really figure out how to do all this, I think we could change the dynamics and the economics very radically in terms of computer utilities and access of all kinds of tools to all kinds of people, and it should almost cost nothing for the communication.
I kind of cheer you on and hope you can get through some of the tangles.
MR. BLAIR: You indicated that you anticipate that you will be able to have your conclusions in about 18 months.
I know that you haven't made the conclusions yet, so I am kind of asking for a little bit of speculation.
I believe that, for the most part, the technology enhancements that you want to add to the internet are technologies that, for the most part, already exist.
They are being used in value added networks and in intranets and in network technologies that are locally controlled.
You are just trying to see what balance you need to add for the characteristics that you mentioned for the internet, which is very open.
I don't see a delay caused by the need to develop new technologies. I think it is going to be the process that, once you finish with your conclusions, what will it take to be able to move forward and to implement this.
Do you have any feeling for whether you expect this to be two years away or five years away or 10 years away or longer?
MS. GRIFFITH: I think that my suspicion -- and again, I can't prejudge what the committee is going to say, but my suspicion is that the committee will identify a number of things that can be done in different time frames.
In other words, identify those applications or various enhancements that are near term. It is a matter of finding a way to apply existing technology in those that are longer term.
I suspect that it will go across a range of time frames.
DR. NEWACHECK: We are a committee on vital and health statistics. I am wondering to what extent vital or health statistics might be included within the purview of the committee.
The title is medical and biomedical applications, but clearly, there are many data sets and applications in the vital and health statistics area that benefit from the internet.
There is some slow movement in that area. It is not particularly user friendly at this point. I am just wondering to what extent the committee might consider some of those health services applications as well.
MS. GRIFFITH: There is certainly an interest in looking at a range of areas. I would see no reason why this wouldn't be a part of that.
There is an interest in looking both at biomedical research, which obviously is a major user of these statistics, and also public health opportunities.
DR. STARFIELD: Maybe I can just take that opportunity to ask you to clarify what the title means, medical and biomedical. What does it exclude?
MS. GRIFFITH: What does it exclude?
DR. STARFIELD: You have biomedical, but you don't have bio-psycho-social.
MS. GRIFFITH: I think it probably reflects the National Library of Medicine's request to us in terms of the way that they have framed it.
DR. STARFIELD: Oh, they framed it, then.
MS. GRIFFITH: Well, in terms of the biomedical research per se, that they have --
DR. LUMPKIN: My guess would be that it is to make sure that the research community knows that it is included.
MS. GRIFFITH: Right.
DR. STARFIELD: Okay, so it is medical and biomedical research applications. That is really what it is?
MS. GRIFFITH: Right.
DR. MC DONALD: I would really guess -- I mean, with further encouragement, and make them aware of all the public health infrastructure issues.
It isn't that much of a stretch to think about -- NLM is housed in NIH, so there is going to be a bias. But there is not a whole huge difference in terms of the issues and the data collection issues between a collaborative multi- center clinical trial and trying to get the public health data from a whole state or a whole country. So, I think there is not a stretch at all to get there.
MS. GRIFFITH: There clearly is an interest in looking at public health applications.
DR. LUMPKIN: Perhaps it might be useful, either at the Stanford session, which is in Simon's neck of the words or in Washington, that we could have a presentation perhaps by this committee, someone on behalf of this committee. I think that may allow us at least to have some input.
MS. GRIFFITH: Certainly.
DR. LUMPKIN: Okay, great. Thank you very much for coming. As you know, our 10:00 o'clock speaker was going to be late.
Just to show you, he is not even reliable about being late. Do you need some time to get ready?
Okay, I guess we can take a five-minute break in place. I warn you, this is in place of our 10:45 break.
[Brief recess.]
DR. LUMPKIN: Before we get started, I would like to call everyone's attention to tab G. For those of you who may not have a tab G in the audience, there are additional copies that are available of the presentation.
MR. NICOLA: Thank you very much, John. I have been asked to come and share with you some thoughts on a presentation that I made recently to the HHS data council about how CDC would like to proceed in looking at a system of information dealing with the public health infrastructure.
What I am going to talk about today really is a follow up of a study that was done some year and a half ago by Lewin and Associates, which outlined different strategies for gathering information about the public health infrastructure.
What I am going to suggest is that we can't really do the whole thing, echo the whole vision, because it was very broad, very large.
We do think that we can start with part of that and then proceed from there. So, I am not here to really gather money, but more to talk about, are these ideas valid and how to proceed from here.
DR. LUMPKIN: That is good, because we don't have any money.
MR. NICOLA: I know I am at the wrong place if that is the case.
As you can see, I have been to other places where it might have been thought that I did come to gather money.
Let's first start maybe talking about the definition of infrastructure. What are we really talking about when we think about public health infrastructure.
This is a definition that comes from our work with Healthy People 2010. We have a chapter that CDC helped develop, in which there were some 120 different organizations represented in public health, looking at the issue.
We came up with this definition and this is actually the one that comes from the Lewin study also.
When we think about systems, we are talking about protocols, processes and programs, that are in place in order to carry out essential public health services.
When we are talking about competencies, we are talking about abilities of individuals, organizations and communities.
Relationships, we are talking about formal and informal collaboration. Finally, resources, we are talking about human and capital resources, financial resources.
Let me just tell you what the Lewin strategy was - -
DR. LUMPKIN: I hate to interrupt you, but you skipped a line on your slide, where you talk about the essential services.
MR. NICOLA: I would be happy to.
DR. LUMPKIN: Some of us know what those are, but others may not be at all familiar with it.
MR. NICOLA: Let me give you a little history maybe of how we developed some thinking about essential public health services.
In 1988, the Institute of Medicine did a study called the future of public health, where they defined three core functions: assessment, policy development, and assurance, as three of the core functions of public health.
A number of investigators thereafter then went into communities and tried to measure these things, and did so by spelling out different sets of public health practices that were based on those core functions.
In about 1994, there was a consensus conference considering all the work that has been done to that point, and attempting to come up with a working definition of essential public health services.
They did, in fact, come up with a list of 10 items. Again, this was really just reached by consensus.
Some of those items were ones that had been used before, and there was field work to really validate those items. Others were new items.
This was the list that was arrived at as the consensus of the public health community as to how we should define the activities of public health.
This is one of those things, if you go out into the public health community and you ask, what is it that public health does, most often you hear the three core functions that the Institute of Medicine talks about.
We have really been working off this list of 10 this last three or four years.
DR. LUMPKIN: We will get out a handout to the committee after the next break.
MR. NICOLA: Sure, and interrupt at any point.
Let me tell you a little bit about what was suggested in terms of a strategy that might be pursued to gather this information about what is happening in public health.
The first item they talked about was national surveys. There, they are really talking about descriptive type of information.
We currently have had some national survey work done. For example, the National Association of National and County Health Officials put out a profile of local health departments.
The Public Health Foundation has done a number of national studies looking at expenditures. Most recently, the National Association of Local Boards of Health did a profile of their members, boards of health in the country.
So, we do have some national surveys. These are usually done at both the state and the national level.
The Lewin study actually went into fairly great detail, suggesting the types of information that might be sought and proposing a major national survey.
They also talked about case studies. Here they are really talking about detailed, complex qualitative data. This is information on the scope and the nature of the infrastructure.
Then finally, they had a component that was describing the research agenda. They actually went into some detail and described different elements of a research agenda that should exist.
One of the main points of this, though, is to identify what are the best practices out there, and what are standards that we can come up with by looking at this practice.
They had a number of other types of recommendations. They talked about having a lead federal agency.
They talked about having a steering committee, such as the public health function steering committee, or some other body that would help guide this effort.
They said that local and state reporting should be linked to the funding stream, and that this particular effort needs to be integrated with other data efforts that are going on.
Finally, they said, we have been using this essential public health services as a framework. We need to really test that out and see how valid that is as a framework. So, this would be an effort to test that out.
So, we come to the question, why should we measure infrastructure. Let me stop and give you an example here of something that happened last summer when some of us tried to fax something to all local health departments in the country.
We had an initiative we were working on and we needed information about infrastructure. So, we faxed a communication -- this was our intent, to fax it to all local health departments in the country.
We went to our records and actually found fax numbers for about two thirds of the 2,888 local health departments in the country.
Then, when we actually attempted to hit the batch fax button and send it out to all of those places, only about half of those telephone numbers really worked.
This is really a statement about our infrastructure. One of the reasons you want to measure is to really document how well is the system really working. What is there and what isn't.
Obviously, there are a lot of reasons why our information was inaccurate, but it does tell you something about where we are at this point.
There are several other types of reasons, such as considering important policy questions and considering current initiatives. Let me go through those just briefly.
If you look at other types of information we have about the system, you can find other examples, in fact, where we really need to pay attention to how strong is our infrastructure.
For example, 78 percent of local public health agency directors have no formal public health training.
Now, many people in public health get there by various routes. This isn't to say these aren't professionals who know what the field is about and how to do their job well.
It just says something about the training that schools of public health give, and the people who actually end up in the field practicing as directors of local health departments.
Actually, when I presented this before, it got us into several other discussions. You can imagine.
We have anecdotally heard about the closure of a number of different local health departments across the country, but we don't really have a data base that is watching this issue.
This is a pretty critical issue for us. We are in fairly turbulent times and we need to know what is happening out there.
Finally, just the communication and computer capacity of the system, just as in the example I just gave you. We really need to know what is happening there.
We also want to know about policy questions. An example, what kind of structure or resources are needed to deliver essential public health services.
Here, for example, we could think about, is there an effective drug surveillance system in place. When we think about skills, knowledge and competency for public health professionals, you might take as an example, do the public health workers in this jurisdiction have investigative skills for outbreaks. Do they know about cluster investigation techniques and interviewing methodology. Do they have qualitative survey skills.
You could think about organizational competencies for public health agencies. For example, what percent of environmental programs in this health department are supported by new revenues.
In addition, there are a number of initiatives that we have going on nationally. The first three that you see there -- the Secretary's infrastructure initiative, the Healthy People 2010 infrastructure chapter, national performance standards for local and state public health agencies -- these all help define infrastructure and outline goals and objectives on a national basis for infrastructure.
So, we need some way to measure how well we are doing in those areas.
The other initiatives that you see on this page have a very strong infrastructure component. We need to be able to evaluate, again, how well we are doing with these.
It takes a lot of partners, really, to develop a system like this. Really, the way we would be thinking about it, these are the partners that we would be looking at.
These are especially important when you are talking about data that is as abstract as infrastructure is. It is somewhat removed and it is frequently difficult to describe to people.
So, how are we planning to do this? Well, we think there are a number of different steps involved, but we really would like to start by working on a system of sentinel sites of local health departments across the country.
By sentinel sites, what I am talking about is really we are thinking eventually of having a full, representative sample of sites selected, places that we could work with longitudinally over time, rather than the spot survey work that we have done in the past.
Part of the problem with national surveys in the past is the denominator has always been changing. So, we are not sure if the same local health departments or local boards of health or state health departments are the ones that have been responding.
So, we see, at least to know what is happening on the ground level, having a group that we would work with over a period of time doing these surveys, doing particular case studies and focus groups, using them to really find out what is happening in the world of practice.
One of the reasons that I have been going around talking is just mainly to get some recognition that this type of information is really worthwhile collecting. We really need to understand this. This is really one of the bases of work that is done in public health.
So, we need to have a system that collects this information and analyses it. We think the place to start is with sentinel practice sites. We would like to move ahead and do that. So, that is one of the reasons I have been going around.
We believe that this type of data system will lead to successful initiatives, to improved policy, to improved resources. That will really give us the improved capacity to deliver services, and will lead to the improved health outcomes that we all want.
DR. LUMPKIN: Thank you. Questions?
DR. FRIEDMAN: At a relatively early stage I participated in one of the Lewin focus groups. I am really pleased to see where you ended up.
I am particularly pleased by the sentinel health department approach, because I think some of the prior efforts to measure infrastructure, which seemed to be very broad state efforts, on both the data collection as well as the results, were not particularly useful. The data were suspect, certainly at the local and state levels.
Having said that, I just wanted to check my perception of how you are defining public health infrastructure, which seems to be local, state public health agencies?
MR. NICOLA: Actually, the way we are thinking about infrastructure is those items that it takes to perform essential public health services in the community, the elements that I listed up front, the system, the relationship.
Those don't necessarily have to be done by the local health department or the state health department, but the local health department and the state health departments need to assure that those things are happening.
So, we are starting with local health departments, because that is, we think, where the assurance function lies and we can eventually see other partners where we might want to measure what is happening in a country.
We think that is where a lot of the monitoring and measuring should go on, and that is what we are starting with now.
DR. FRIEDMAN: Let me just give a couple of responses. As I am sure you know, the role of the local health departments vary greatly from state to state.
In some states they have a wide range of functions. In other states they have got, in fact, very few functions, and the state has a much more active role.
Secondly, I think in states with really high managed care penetration -- 30, 40, 50 percent -- the role of certainly local public health agencies is changing.
The division between public health activities and private health activities is really blurring. As managed care penetration increases, I think that when we think in terms of the infrastructure, we are really going to need to take that into account.
I think it might be particularly problematic in talking to local public health agencies as opposed to state.
MR. NICOLA: Good point. I think there are certainly a number of states who basically perform the functions of local health departments, where there are basically no local health departments per se, the state basically runs the local functions.
Those agencies also have the responsibility for assurance. I think we need to document that, no matter who is actually providing that.
When we think about actually selecting 75 sites, we want to pick a state where the state is actually the agency performing this.
We are really trying to think now about what are the selection criteria you would use. Actually, managed care penetration is one of those factors that we have been thinking about.
We really want to know, in fact, how are those communities different where there is major managed care penetration versus one where there isn't.
This has been such a changing environment in health care that some health departments have basically gone out of business.
Some have -- and I am talking about local health departments now -- have responded actually by rising to the challenge and becoming a fairly strong competitor, especially for Medicaid managed care. That has been one of the major factors involved.
This is really one of the trends that we need to be monitoring and we are not doing as well as we should in that.
MR. BLAIR: I live in a world of information systems and health care. Sometimes it is not always completely engaged with other public health activities.
My question, if it is too far advanced, or too far information systems focused, just let me know.
The question that I have is, as you begin to look at the health care infrastructure or the health infrastructure from a public health standpoint, did the discussions begin to include how that might change, as we begin to move toward a health care information infrastructure, where there would be more telehealth, where there would be more ability to have continuity of care, where there would be more ability to be able to apply decision support, not just retrospectively, and monitor things and monitor quality after the fact, but actually be able to have practice guidelines and clinical protocols concurrently with the delivery of care, and the monitoring concurrently with the delivery of care.
Would these things that were included, were they just considered futuristic, or did these enter into the discussion?
MR. NICOLA: I think you are describing a lot of the types of advances that we would all like to see happening.
In fact, there are pieces of work that contribute to the types of advances that you have described.
For example, in the recent emergency funding for bioterrorism that was passed, there is an effort called the health alert network.
It will, in fact -- its purpose is to connect local and state and federal public health agencies together, to be able to have rapid communication about diseases and about risks.
We see that really as building broader infrastructure that is needed for whatever health risks are out there, not just bioterrorism. That is the kind of thing where that is happening.
Where we see initiatives like that fitting together somewhat hand in glove with the type of data collection effort I just described, to really build a system where all the local governmental entities are communicating together, we need to have some information about them first.
So, the baseline information that we collect is certainly part of the data system that I am talking about.
Actually getting something done, building the system as part of other initiatives that are going on, this infrastructure data system will help us be able to evaluate how successful have we been in building a health alert network. That is an example of how we would use it.
DR. STARFIELD: This question is a variation on a theme of what Jeff addressed, and it is really trying to get at what you mean by infrastructure, which to me means structure. It is sort of what is there before you do anything.
We hear the words 10 essential services, which sort of means doing something, not the structure. So, I am confused about that distinction you used, in monitoring and measuring. But you know, what, the elements.
Do you envisage the system as part of a national health data system. That is sort of what Jeff asked. What are we talking about? Are we talking about the structure or the services?
MR. NICOLA: That is interesting. Talking about infrastructure is somewhat like giving a Rorschach test.
People basically have their own mental images and mental model of what I am mean, usually, when I am talking about infrastructure. Those are the questions I get back.
We do have some definitions. We have this consensus statement. What we would actually like to do, and what we have started to do, is operationalize that somewhat, so we can tell you what it is that we are measuring when we measure each of those elements of the 10 essential public health services.
Yes, and we tried to use different analogies like the bridge and road analogy. We are basically talking about the people, the buildings and what it actually takes to get the work done that public health needs to do in communities to keep them healthy.
Until we actually get this operationalized and describe it -- we have an effort going on now. One of the lines you saw up there was the national public health performance standards project that we are working on.
We do layout. We are doing this with the National Association of County and City Health Officials and State and Territorial Health Officials.
It is standards for state and local public health, where we basically define, for each of those essential public health services, what are the elements that should be in the community and measure how well we are doing it.
That is when I think there will be a better grasp of how well we are doing. The definition itself is kind of like coming up with a behavioral risk factors systems. You first have to get started in doing the work. Then that helps you define what you are really talking about. I think this is the same kind of situation.
DR. AMARO: One of the things that one of the subcommittees has been involved with is looking at the public health infrastructure data systems in what we call the insular areas.
I see that you do mention territorial health officials, so I was happy to see that. I would hope that you really think about not only state and local departments, but really think about the public health infrastructure issues that are faced by people who work in public health in those other areas.
They are very different and they have always been excluded. The report that will come from our subcommittee is really going to be making recommendations about envisioning a public health infrastructure data system that really extends to those areas.
I am sure you are familiar with them, but you might be interested in looking, when our report does come out, some of our recommendations.
I think it is really important that we move toward more inclusion. They are part of U.S. territories and affiliated states.
The other point that I wanted to make is that another very important initiative is the ONDCP national drug control strategy, which lays out a 10-year strategic plan and performance objectives, for both demand and supply reduction.
A lot of those objectives in performance measures really don't have any place to hang themselves right now in our data system.
I would suggest that you might look at that. That is a very important 10-year plan that has been articulated out of the White House.
MR. NICOLA: Thanks very much. You have asked the right person about insular areas. I am the coach here of the CDC's Pacific Island advisory committee. I am sorry I couldn't make the meeting where you had the representatives here. I certainly heard about those.
CDC has felt a strong need to really help those areas develop. In fact, that is why we have one to two staff people out there, to really work on the ground with folks.
We will be looking at that closely, and we will be happy to take a look at what is in the national drug control strategy.
DR. AMARO: It might be interesting to make one of your sentinel sites to be one of those sites.
MR. NICOLA: That is an excellent idea.
DR. AMARO: To really start getting a sense of what development issues would be for them.
MR. NICOLA: Good idea.
DR. MC DONALD: As one who likes to go to islands, I think I would support that.
I just want to I guess reinforce, you know, your direction and comment. There really has been a lot of activity within CDC in terms of data standards and data movement and immunization and surveillance. I guess you are going to have some hearings in June, and recently on cancer reporting.
You have an interesting dance. There are the states and the organizations like the SDE for surveillance reporting.
I think so far you have danced the dance well. I mean, they are all engaged in working at it. Some of the states are really sort of leaders in this area.
I am real impressed by New York. I don't know if it is running yet, so maybe I shouldn't be impressed. Ivan has got a neat system in New York that is about to go up. Every single public health service site is going to be on the network using web technology.
Along that line, a lot of times when federal agencies decide to do this thing, then they go out and contract it and it becomes hard coated in some other thing, and it never glues together very well. I am sure you are not going to do that.
MR. NICOLA: No, we are going to be goosey loosey.
DR. MC DONALD: And it can be glued together, and the web has those nice properties if you can go that way.
DR. LUMPKIN: Other questions? I have a couple and a comment. First, I think it is a very important step that the CDC is making.
It is too often that we, in information systems, when we think about infrastructure, we think about the initiative to improve the information systems that are out there.
What Bud is talking about is a system to measure what is actually out there.
Greene County in Illinois is a small county. Its capitol is Carrolton. It has a population of about 17,000.
When you go into Greene County and you talk about infrastructure and you talk about environmental health, you get introduced to the director of environmental health. You get introduced to the chief sanitarian, and you also get introduced to the chief food inspector. They are all the same person.
The information systems that they have are their file cabinets and their pieces of paper. The only computer that they have in there is one that the state put in in 1985 to develop an information system that was designed to respond as a dial-up system after our outbreak of salmonella.
It is run by a 286 computer which will die on January 1, 2000.
MR. SCANLON: Or before.
DR. LUMPKIN: No, we keep those babies running. This is the state of the public health infrastructure and it is one which basically has no measurement, because we don't really know what that system is.
I think we are beginning to actually go out and identify these sites and look at the transition.
On the average, the local health department in Illinois, two-thirds of its revenues come in from personal care, which means that when managed care comes in, it is not the fact that their character changes and they are now competing. It is the fact that all the other population- based activities that they do, the nurse that does the immunizations and does the outreach and does the health education, it is two thirds of her funding to get her to work in that local health department comes from working with the home health agency that they run.
When the home health agency goes away, how do you continue to have this nurse. So, all these sort of measurements of this public health infrastructure are, in fact, a very crucial component.
One of the pieces that we found -- and we participated in the infrastructure study that was done by the public health foundation, is that the funding at the local level, by and large, is about a one-third, one-third, one- third in Illinois; one-third local resources, one-third state resources, and one-third federal.
My only concern about the rolling out of this system is that, by looking at local health departments only, the assumption is that there is no value added by the state structure, because we are not measuring that.
In Greene County, when they have an outbreak of a food-borne illness, they don't have the resources to be able to fully investigate that.
They don't have the technical resources to know whether or not this new bug that they are seeing is something.
They send it to the state lab. The state epidemiologist goes there and talks to them on the phone, helps them to conduct their investigation.
That is all value added material that will not show up on an infrastructure study that is only based on sentinel local health departments.
I am not saying -- I don't want the perfect to be the enemy of the good, and this first step is a very important one.
I think we also need to look at next steps, to make sure that we don't miss an important component in that public health system.
The final comment I have is related to the ability of this system to actually measure what it is that you want to have.
Sometimes 75 sites, if they are well chosen, can do that, especially if you pick sites -- in Iowa, for instance, there are only 10 counties that have local health departments. The other ones don't; they are run by the state.
So, you want to have states that play that role versus states that may be like Florida, where they own and operate the local health departments, and then others where there are independent local health departments. So, a very broad selection.
There may be an opportunity to, in fact, roll out this system at a much greater rate than you would expect.
My guess would be, if you were to come to Illinois and you were to say you had a model of this system, we would look at that and look at other expenditures to roll it out to all of our 92 health departments, because the same sort of data that you want to collect is very important to us in our mission.
In many ways, we consider the mission of our agency to create the conditions where local health departments can be successful.
As we begin to roll out the system, there may be certain states which would be willing to participate in this project and replicate the sentinel sites much more rapidly than you would expect.
MR. NICOLA: We will need to talk a little afterward. Thank you very much; I think it is a great idea.
MR. SCANLON: Bud, in addition to the seminal sites, I remember that part of your framework was the idea of the survey that would be done on a recurring basis, of all the state health departments and related agencies, as well as federal, at the national level as well.
So, these are envisioned as part of the framework in addition to the sentinel --
MR. NICOLA: The sentinel sites was only one piece. We are going to continue to look at national surveys that have been going on.
The work that people like the Public Health Foundation and others have been doing, we are certainly not trying to discourage that. That needs to go on and be part of it.
There has been some talk and just some thinking about do we need a sentinel network of state health departments, too.
How do we document the state role. I think it is the same question that you have raised, at this point.
DR. LUMPKIN: If I can respond to that, a key component of what you are doing is determining what to measure.
Once you have determined what to measure, whether it be on a state level of local level, the states in many ways are interested in the same issues. It becomes something that can be replicated.
By developing a system and the standards for the data interchange of that system from a local to the state, and therefore from the state to the federal level, identifying the data fields you want to collect, I think it may engender a greater propagation than just perceiving that you are going to implant these systems in various state localities.
A lot of the thought work is going to be very crucial because I think it may precipitate more data gathering than you may expect.
DR. FITZMAURICE: A question about the logistics. I see how it fits together, but I don't know how it is linked.
Are we talking about putting high tech in local sites so there is very rapid monitoring, very rapid communications?
The surveys go out over a wire that comes up on the screen, they fill them out and send them back in; case studies ask questions and you accumulate them?
Are we talking about studying them as they are, as they currently do their work? Maybe it is a mail response; maybe it is a telephone, not infusing them with technology, but studying them as they are and then formulating, what would be good for all the local areas, based upon what we learned about some have technology, some don't have technology, some are linked up with the states.
MR. NICOLA: Good point. What we are really talking about is measuring them as they are at this point.
There are other initiatives that are attempting to improve the infrastructure, to connect everybody, to give them the high tech tools that they need.
Those tools will go on. We will obviously be working with them. I think our intent has been all along to document what is there, just to measure what we have in the system.
DR. FITZMAURICE: What a neat controlled study. Here you have got 75 sites you are studying as they are, another 75 sites where you infuse them with the technology, and see what happens. It means double the budget for this; right?
MR. NICOLA: Right; absolutely.
DR. LUMPKIN: We are willing to double our funding to this project. [Laughter.]
Any other questions? Thank you very much for coming.
As I mentioned, we already had our break, so we are going to move to our next item on our agenda, Ann Page.
MS. PAGE: I was asked to speak about quality improvement systems for managed care. Also, I am going to be speaking about it from Medicaid's perspective, although as you know, QISMC is a joint Medicare/Medicaid activity.
Just a brief review of it, we began this initiative back in 1996, again, to try to come up with what are the standards that Medicaid and Medicare, as purchasers, wanted to require of their managed care plans to promote stronger quality.
So, we convened a group, through the National Academy for State Health Policy. It was to review existing standards, both existing Medicare and Medicaid, as well as private sector standards, like NCQA and the Joint Commission.
That produced a draft set of standards that came out in January. There was a Federal Register notice. We got extensive public comment, held an additional public meeting back in May, and the standards were released in September of this year.
Again, what we were attempting to do with the QISMC standards, was to update Medicaid standards. In 1993, HCFA had disseminated a set of quality standards for managed care plans. It went by the name of QARI, the Quality Assurance Reform Initiative.
We needed to update those Medicaid standards, but also take the opportunity to make good on a promise, I think, that the industry had asked of HCFA for a number of years, which was to achieve some consistency across Medicare and Medicaid standards.
One of the things I am really proud about with respect to HCFA and QISMC is that we did make good on this promise. These are standards that are used both in Medicare and Medicaid purchasing.
Also, we wanted to use them as a tool for HCFA Medicare and Medicaid approaches to value based purchasing.
The HCFA document, the QISMC document that was produced and is available on our web site actually has three pieces to it.
There is an introduction section that really gives some history and places it into a context and describes what it is all about.
Then there are the standards themselves, and I will go through these in detail in this presentation, and a set of guidelines that accompany the standards that describe our intent.
The standards themselves -- let me just make one important point. With respect to Medicaid, like our QARI standards that were released in 1993, these are advisory to states.
HCFA is not requiring states to utilize these standards. We are very confident that they will be used by states based historically on what happened when we released the QARI standards back in 1993. Most states have used them because they appreciated their merit as a tool.
States really aren't interested in re-inventing the wheel. They do appreciate ready-made tools for their use.
There are two further strong incentives for states to use these. One, the BBA regulation that we put out has content that mirrors these standards.
We have communicated to states, and our state Medicaid director, that to the extent that they use these standards, they will be found to be compliant with the BBA rule.
That is another strong incentive. Then the third and final one is it makes them a better business partner.
They now can say to their health plans, these are the same standards that you are having to adhere to for the Medicare program. These aren't an unusual set of standards; these are pretty consistent.
So, we expect that if QARI back in 1993 received a pretty good reception and use by states, that we expect the QISMC standards to receive the same.
The standards are labeled interim standards, and that is because we do have two rules out, proposed rules. One is our Medicare interim final rule. Another is a notice of proposed rule making on Medicaid, which does have content on quality improvement standards.
If, as a result of the comment process, we do have to make changes to those rules, we will make sure that QISMC does not have any provisions that are inconsistent with those final rules. That is the reason they are labeled interim.
Our standards really address four things. I wish item one and three were switched, just because I think logically it makes better flow, but quality assessment, performance improvement is the one that people have the greatest interest in, so it turned out as domain one.
Basically, we thought long and hard about what were those things that we thought were important from health plans.
What is important about health plans is that they, indeed, manage their care, they do ensure the protection of certain enrollee rights, that they have strong mechanisms for assessing and improving quality, and a small standard, but important one, is on delegation.
Basically, you can subcontract out a lot of things, but we expect that a health plan is still responsible for them.
So, just because there is a subcontract in place, that does not remove the health plan from the responsibility of making sure that certain things are done.
I want to go through each of these four sets of standards pretty quickly.
The first domain, quality assessment and performance improvement, has three basic requirements. The first is that the health plan will measure its performance using standardized performance measures, and can achieve minimum performance levels that will be identified either by states for Medicaid or by HCFA for Medicare.
It will be undertaking performance improvement projects, and it will correct systemic problems that become obvious, either through these processes, or through other mechanisms, like individual enrollee grievances or complaints.
With respect to the performance measures, MCOs -- that is a new regulatory word, managed care organizations -- will be reporting using standardized measures required by states.
What this typically means in states is HEDIS or a HEDIS-like tool. Some states modify the HEDIS measures, some state add to the HEDIS measures, some states use a subset of HEDIS measures.
In our guidelines that accompany the standards, we do recommend to states the use of the HEDIS document.
They are to achieve any minimum performance levels that the state would require. The guidelines do call upon states to review historically where health plans have been performing on certain performance measures, and to begin to set some minimum performance expectations.
If you do know that most of your health plans have a 70 or 80 percent immunization rate, that if you have got a health plan that has got a 50 percent immunization rate, you can identify what is the minimum level of performance that has been achieved historically in the past, and that it is expected that health plans will try to raise that.
So, our standards actually do two things. They try to pull from the top up and they try to push from the bottom up.
Then the QISMC standards do say that states may set any plan-specific minimum performance levels. If there is a health plan for whom the state has some concerns about, say, behavioral health care that has not been the same as other behavioral health practices, that it could direct a health plan to undertake a study and measure its performance specifically in areas that might be of concern to a specific plan.
Again, I am sure everyone around this table knows it, but we do actually have to define this for people.
What we mean by performance improvement is that there will be the measurement of performance in one or more focused area.
Based on that baseline measure, we do expect that plans will undertake system interventions.
So, we really are trying to distinguish between one-time blips in performance, versus underlying systemic change that will result in sustained improvements in care, and that there is an evaluation of the effectiveness of those interventions. So, we do expect that there will be demonstrable improvement and sustained improvement, and we actually do define those things.
We do identify those areas that we think are appropriate for performance improvement projects, and we do identify both clinical areas as well as non-clinical areas.
These have not been as specific as perhaps some groups that commented on the QISMC standards. We originally had certain subpopulations identified. We had children; we had institutionalized elderly.
One of the results of our public review comment is that that very short list of some priority subpopulations pretty quickly grew to a very long list of lots of subpopulations.
We had children, pregnant women, teenagers, teenagers with substance abuse, aged populations. We very consciously did not try to identify specific diagnoses or specific subpopulations.
Our standards do call for health plans to identify those health concerns that are prevalent for the population that they serve.
It does assume some demographic and epidemiologic knowledge of the population that they serve, and for the health plan to pick topics in these categories that are appropriate for serving that population.
We actually do have standards on what we consider to be an appropriate methodology for performance improvement projects.
You may not find this -- actually, I have to go back and look in our guidelines. You may not find pre and post research design in our guidelines, but I think that is what we are calling for.
We are expecting that there will be a baseline measurement. We are expecting that there is an intervention to improve upon the baseline measurement. Then we are expecting it to be measured again.
A comment that we have consistently received is, why are we specifying research standards for performance improvement projects; that quality improvement is not research.
There has been concern that HCFA is being unduly stringent in trying to apply research criteria to performance improvement.
Our response to that is that whether you choose to label these performance improvement projects as research, or whether you want to call them quality improvement, what it is all about is measurement.
What we really need is reliable, valid, accurate measurement. Again, I don't want to get into a debate on whether this is research or whether this is quality improvement.
I think in order to take action, in order for a health plan to take action, they need to have a certain level of confidence.
So, our methodology does call for collection and analysis of valid, reliable data. We have standards calling for random sampling as appropriate.
They have to have face validity; that if you show an improvement in childhood immunization rates, but you can't really provide evidence that the health plan did anything, but rather, there was simultaneously a statewide initiative to improve childhood immunizations, you may not really have that kind of validity.
We also called for the health plans to achieve demonstrable improvement. By this, we have meant that you may show demonstrable improvement either by meeting a national bench mark -- for example, that HCFA may have set for the Medicare program -- or a state bench mark that the state has set, or that you can achieve a 10 percent reduction in unsuccessful care.
I have to explain that one. It is a little bit confusing here. When we say a 10 percent reduction in unsuccessful care, we don't mean that if you have a 60 percent immunization rate, that you go from 60 to 66 percent. That is not what we mean.
You actually have to state it in the negative first. If you have got a 60 percent immunization rate, that means you have got a 40 percent unsuccessful rate, and 10 percent of 40 percent is 64 percent.
Stating it in the negative actually has a couple of desirable attributes. It means that, as bad as you are, we expect a greater improvement, and as good as you are, we have less expectation of improvement.
So, if you have a 20 percent immunization rate, we expect to see that come up by eight percent points. If you have a 90 percent immunization rate, we are only expecting a one percent increase.
It does recognize that the better you are, the more difficult it is to achieve any additional gain through your quality improvement initiatives.
We do require that, if you are using a sample as opposed to a census, or using 100 percent administrative data, that this be significant at the P=.10 level.
We do have some structural standards in our quality assessment and performance improvement project pertaining to health information systems, as well as administration of the quality assessment and performance improvement project.
These administration standards are not greatly different from those that you are probably very familiar with seeing, in the NCQA standards or Joint Commission standards.
It basically says that your organization has to have leadership, it has to have a structure, it has to have committed sufficient resources to enable you to do this.
Our information systems standards actually are not very detailed either. They do not specify hardware or software.
It simply says, you must have the capacity to achieve the preceding standards. You have to have enough capacity to measure your performance, to conduct performance improvement projects in accord with the methodologic standards that have been set forth.
It is basically a back door way of saying, don't say you can't do these things because your information system doesn't allow it. We expect that information systems will have the capacity to conduct performance improvement and performance measurement.
With respect to enrollee rights, which is the second domain, the standards say that the organization really needs to have policies in place to protect them.
We detail specific rights, which look a lot like the consumer bill of rights from the President's advisory commission.
We have detailed information that enrollees need to have, and a fairly detailed set of instructions for how complaints or grievances or issues related to prior authorization need to be addressed.
With respect to the policies, that there will be written policies in place, and that the MCO is responsible for communicating these to enrollees and staff, and that they do monitor them and show a compliance with already existing statutes.
Very quickly, these enrollee rights -- and I will go through these just very quickly -- are dignity and privacy and confidentiality and non-discrimination, the right to accessible services.
One of the things that I think makes the QISMC standards different from standards that might be used in the private sector is our attention to individuals with different cultural backgrounds, or individuals with complex medical conditions, vulnerable populations.
So, you will see in a few instances -- not a lot, but you will see specific provisions targeted to vulnerable populations.
One reason that has been defined for vulnerability is related to cultural, ethnic, social conditions and not necessarily medical status, and then the adoption of the prudent lay person standard for emergency medical services.
Sort of the usual standards on the ability to choose primary care provider and the right to refuse care; rights to participate in health care decision making; then the rights to receive information, sort of the non-gag rule provisions, to access medical records, and to prompt resolution.
Enrollees are to receive written information on their rights and responsibilities, and the networks providers ability to choose.
Then, how can MCO evaluates new technology for benefit coverage, and what are the policies for referrals for specialty care and out-of-network services, and other services not to be provided by the MCO's primary care provider.
Authorization requirements, this second provision is one that is unique to the Medicaid program. The Medicaid statute mandates that all Medicaid beneficiaries, whether enrolled in a managed care program or not, always have the right to receive family planning services from any provider, whether or not they are part of the health plan's network or not.
Information on provisions and termination and changes in benefits, again, information on how to resolve complaints or recommend changes.
Then they are required to be notified that they have the right to receive summary information upon request.
Also, in addition to what information is required, there are specifications or standards on how this information should be made available, that it needs to be readily available and easily understood, in languages of major populations.
A companion to this in our BBA proposed rule, we require that states have a methodology for determining what are the major population groups and major languages spoken within their states.
This information, then, would be shared with the managed care plan, so that this information that the health plan has could be used to inform them as to what kind of languages.
This is a significant problem nationally, as well as much more intense problem in certain areas of the states where we have very, very different ethnic and immigrant populations and people speaking different languages.
The standards have a pretty detailed set of procedures for how enrollee issues should be resolved, whether there are complaints or grievances or issues related to service authorization.
The third domain on the management of services addressed these components:
That managed care organizations are expected to make their services available and accessible -- and I will go through what the standards are for each one of these categories;
To assure continuity and coordination of care, authorization of services, the utilization of clinical practice guidelines and new technology;
Usual provisions for provider qualification and selection, and then practices pertaining to enrollee health records and communication of clinical information.
The availability and accessibility standards, the first one really pertains to the provider network. The MCO is supposed to maintain and monitor and have a methodology for constructing the network that includes both primary care providers as well as specialty providers.
It does have a provision for assuring direct access to women for women's routine and preventive health services.
This is the standard, I think, that has received a lot of attention and has reassured groups about HCFA's commitment to serving individuals with special or complex health needs.
The standards require MCOs to have some mechanism in place to identify those individuals. We aren't saying how that has to be done. MCOs could do that based on diagnostic categories. It could be done as part of an intake screening program.
There need to be some procedures in place to begin to pay attention more carefully to the populations with special needs, and that there are mechanisms in place to assess medical conditions and to address and monitor them, as well as the formal development of a treatment plan that does allow for a certain number of direct access visits to specialists, consistent with a treatment plan.
The access and availability standards also address continued access to specialists in the case of an involuntary termination of a specialist for something other than cause.
Again, the hours of operation and the provision of culturally competent services, which we actually don't see a whole lot on culturally competent services. We have, as a minimum, said that this should include the provision and attention to languages spoken by individuals for whom English is not a primary language.
It is, I think at this stage of the game, more of an intent to say, well, HCFA's acknowledgement of cultural competency as an issue, but we are not quite ready yet to say what that means other than the attention to language.
With respect to continuity and coordination of care, the standards say that there should be a designated health care professional responsible for care, including ongoing source of primary care.
As non-controversial as that might seem, it is one that actually we have received a fair amount of comments on and it is one that we are expecting to receive comments on, on the Medicaid rule as well as the Medicare rule.
The expectation that there might be a designated provider within the MCO who is responsible for coordination and continuity of care is one that we will have to be looking at, I know, again.
Procedures for timely communication and then mechanisms to inform enrollees when there is a need for self care or follow up, or if there are difficulties with compliance.
There are standards for service authorization, that the MCO does have its own policies and procedures for initial authorization.
Decisions are based on medical evidence and consensus, that there is the involvement of a clinical peer for all denials, and notification of adverse, the existing statutory prohibition on financial incentives, and the requirement that providers be able to advocate on behalf of enrollees.
With respect to practice guidelines, we are requiring that the MCO adopt -- not develop, but adopt -- practice guidelines that are based on medical evidence or consensus, that reflect the needs of the enrolled population, and that this be done so in consultation with providers.
We do not, in these standards, specify any particular set of clinical practice guidelines that are to be used. I think avoiding a charge of cookbook medicine, but we do recognize the need and sort of the widespread endorsement of the use of clinical practice guidelines.
DR. FITZMAURICE: Do you monitor? Do you inspect a plan of theirs, a book that has something called guidelines in it? Do you ensure that they have it, regardless of what it says?
You don't pass judgement on what it says, but you are sure that they have something that relates to medical services?
MS. PAGE: It is a little bit premature. Protocols to monitor for compliance with these standards are being developed now. I haven't seen the particular provision that is going to address how we would monitor for compliance with these.
I think a reasonable expectation that I would have is that we do see somewhere these guidelines, and that there is background evidence tracing why those particular standards were adopted, where did they come from, were they from a national consensus body, or were they developed completely in house. What was the medical evidence review that was performed as part of coming to these.
I think we will expect, in monitoring for compliance, somebody will need to look at these and figure out why they were adopted, and were they adopted consistent with these, based on medical evidence or consensus, and in consultation with providers, and that there are practice guidelines that actually do reflect both the needs of the population -- that sort of match up the needs of the population with those practice guidelines that have been developed, for which there is large consensus and support.
The requirements for new technology is that managed care has policies and procedures for evaluating new technology, or the application of new uses for existing technology, and that these actually do reflect the consideration of Medicare and Medicaid coverage policy.
Okay, the provider qualification and selection standards are probably not anything that is real new here.
They look a lot like, I think, NCQA's credentialing standards. We do have standards about the construction and maintenance of enrollee health records.
One of the provisions that has received an awful lot of attention and is found, again, in both the Medicare and Medicaid proposed rules is this initial assessment of enrollee health care within 90 days of enrollment.
What we have meant by that is not that this is a face-to-face physical examination and health history, but that there be some outreach to new enrollees soon after their enrollment in the health plan, that seeks to identify ongoing or emerging health needs.
So, whether you have enrolled somebody who does have -- this could be one of the ways to fulfill that identification of who has a serious or complex medical condition.
This could be telephone contact, this could be post card information. It is to identify some mechanism for not just waiting for that contact, but some prospective contact with enrollees to identify what might be needs that require sooner rather than later intervention.
Then sort of the usual standards for maintenance of enrollee health records.
Again, continuing, the MCO has a QI process for enrollee records, and that it does have standards for confidential and appropriate exchange of information under a couple of different scenarios.
What is the mechanism for ensuring appropriate exchange of information when an employee exercises a point of service benefit.
What about when an enrollee chooses a new primary care provider within the network. What about when an enrollee enrolls in a new managed care plan. What are the mechanisms. What are the standards a health plan has to assure appropriate exchange of medical records and clinical information in each of those different scenarios.
Our last standard, again, pertains to delegation, because this is a pretty widespread practice.
Although a state may contract with an entity to provide Medicaid managed care, that entity may also, in subcontracting with groups or with credential verification organizations, or with UM services, or a lot of different activities that get subcontracted out, this standard does say that the MCO is expected to oversee and be held accountable for the functions that it delegates to another entity.
This would require some prospective attention be paid to this delegation, so that there be a written agreement pertaining to this, that the MCO would evaluate the ability to perform the delegated function before deciding to make that delegation, and that there be at least annual evaluation of the ability to perform the functions that were contracted out, and special provision pertaining to the construct of the provider network.
Okay, with respect to how this is going to play out in Medicaid, again, we did have a document that came out in 1993 called QARI, which was called the health care quality improvement system for Medicaid managed care.
The second and third chapters of that four-chapter document included standards which were recommended for states to use in their managed care contracts.
The QISMC document will replace that second and third chapter.
Again, we do not require HEDIS, but we recommend its use. In the accompanying guidelines for the implementation of the standards, we really see that as a real strong candidate for the requirement that the state specify standardized performance measures.
We note that a number of states already do this. This is not something that is a surprise, or that many states are unfamiliar with.
These standards do not require the use of a consumer survey anywhere. Our proposed rule doesn't require it and QISMC doesn't require it.
We view this as a way to address those non- clinical areas that are appropriate for quality improvement studies.
So, the ways to assess improvement on availability and accessibility and client satisfaction with care would be through consumer surveys.
QISMC, we like to say, is really just one part of the state's quality strategy, and I am going to talk about that a little bit more.
States actually have other tools, other requirements that they must use. One of those is that states use an external quality review organization to annually review all of the MCOs that they contract with for quality and accessibility and the appropriateness of care that is delivered by the MCOs.
One of the questions, actually, that we receive sometimes is why in the world did HCFA even bother trying to come up with QISMC standards. Why didn't it just go ahead and deem standards that are already used in private sector.
I think deeming in the absence of standards is a little bit like cart before the horse. How could we deem something if we had not identified, to ourselves and to the at-large public and to our beneficiaries, those things that we thought were important.
So, in this sense, I think having QISMC standards is really the first step toward an appropriate use of deeming by the Federal Government.
Again, with respect to Medicaid implementation, these standards are just one part of the state's quality assessment and improvement strategy.
The balanced budget act required -- and I think it was a wonderful requirement; it is something we have been advocating for a number of years, and to find this put into statute, I think, is a great step forward.
It requires states to have a quality assessment and performance improvement strategy for its managed care organizations, for its contracts.
In the past, states were really hit with, okay, here are these quality standards, here is HEDIS, here are consumer surveys. Here is a whole bunch of things that your external quality review organization should do; now go use them.
The real challenge for states was to be able to articulate how those things were going to work together in an efficient, non-duplicative, very effective way.
So, this is a requirement that says states, figure out how you are going to use these things in concert, in a way that makes sense, in a way that is efficient, in a way that is not duplicative.
Again, to underscore, however, that these standards are voluntary, although they mirror quite a bit the provisions of our proposed rule, and that we do need to consider the compliance monitoring.
The documents that we have set up so far do not have mechanisms for how states would monitor for compliance with the standards. Those are being developed now.
We have received requests and suggestions that we pay a lot of attention to technical assistance, both to states and to managed care plans, realizing that both of those entities vary in their expertise and knowledge.
To an extent they are already doing this. Some states are already doing this. Some states are already ahead of these. For those states, there is not a need.
There are some states that are beginning prepaid capitation contracts, and for whom the concept of measurement of performance and identifying a set of performance measures that they want all their health plans to report, and what to do with that, is going to be a new challenge.
Just to back up a little bit, the quality and assessment improvement strategy that the BBA required made three requirements, and we have put these in our proposed rule.
This is what we, at a minimum, have said to states, when you put together your strategy, here is what it must have.
You must have access standards and other quality- related standards. This is where the text and the reg mirrors a lot of what is in QISMC. QISMC is more detailed than the regulation.
The strategy must have mechanisms for monitoring for compliance with those standards, and you have to have a mechanism for integrated these two activities with the work that the external quality review organization will be doing for you.
One other good thing about QISMC being voluntary, because oftentimes we just hear the negative; oh, my gosh, it is voluntary; nobody is going to use it.
The good side is QISMC, right now, can be used immediately. If it was part of a proposed rule, our proposed rule that is out there now won't be required for like another year and a half, because we need to go through the review and comment process, we need to promulgate it again as a final rule.
It will take 60 days after that final rule. Then we have a provision in the proposed rule that says that states can further take up to a year to incorporate these provisions.
That recognizes that states already have contracts in place and they can't just immediately amend their contracts in a mid-contract year.
So, if QISMC were sort of a regulatory process, you may not see it beginning to be implemented for two more years.
So, the fact that QISMC right now is voluntary means that states can begin now to integrate this as part of their quality improvement strategies.
Again, we looked to how states utilized QARI, to give us some idea of how we think states will use the QISMC standards.
We can conclude sort of two things here. States, we believe, are likely to use this for the reasons that I mentioned earlier, and states are likely to phase it in.
That is what a number of states have done with the QARI standards. They look to see, here are both standards; here is what we are already doing; is this going to be too big a leap forward to sort of wholesale adopt these. What can we use now; what is the next set of steps we need to do.
This is just to underscore another difference between QISMC and the BBA. Medicaid does not regular HMOs directly through its regulations.
We regulate states and what they have to do to receive 75 percent FFP. Our BBA sets forth standards for states.
Now, indirectly it says, now, you must have contracts that have the following provisions. But the difference, one of the differences between our rule and QISMC is that QISMC really is standards for MCOs, and the BBA specifies standards for states.
The way that these two things come together is that if states are looking for tools, mechanisms to help them fulfill those requirements in the rule, they can look to the QISMC document as translating that rule into standards.
We have said in our proposed rule, however, that states may take QISMC and throw it out the window. They have to come up with some mechanism for meeting the requirements of the BBA rule, and we think this is a good one and here, use this, and we think, again, that is an attractive appeal.
If states say, no, we have got a better way of doing it, a whole different way of doing it, they can do it their better, whole different way.
Again, the QISMC has more detail and greater specificity than the BBA rules. A good example of that is the quantitative thresholds for demonstrable and sustained improvement.
We simply say that the state needs to require that quality improvement projects show demonstrable and sustained improvement, and that they should do this through some numerical threshold that the state adopts.
A state may say no, I am not going to ask for a 10 percent improvement; I think that is too rigorous; I will make it a five percent improvement. That is fine.
The other nice part about QISMC is that it is a whole lot easier to update QISMC than it is to update a reg.
With the way the industry is changing and the way in which quality improvement is changing, we need to have a vehicle for making changes and communicating standards for quality improvement.
We will, again -- we had a competitive procurement. The BBA required HCFA to contract with an external independent quality review organization, to help us to develop the protocols that will be used as part of external quality review organizations.
We identified some working assumptions, areas that we want those protocols developed for. We have identified that protocols will be developed for auditing performance measures, for verifying quality improvement projects, and for determining compliance with the other structural standards of QISMC, those found in the second, third and forth.
We had a competitive procurement. The Joint Commission was awarded that contract in partnership with two other entities, and they will be developing protocols for us in these areas.
Protocols for monitoring for compliance with QISMC will be available by March of next year.
With respect to the last slide, technical assistance, we have begun an initiative to give technical assistance, again.
The first part of that was, we had a two-hour satellite broadcast on QISMC that was targeted to states, regional offices, managed care plans, advocacy organizations.
We believe it was probably, I think -- the number is so high that it is almost unbelievable. But HCFA has been effectively using satellite broadcasts as a way to target large numbers of people for technical assistance and training.
We are now sort of embarking on phase II. Now that we have sort of communicated those standards, what is next.
As part of the Joint Commission contract, there is a training component that, once the protocols are developed, that they are to participate in ongoing training.
We also have three other contracts out that will complement the QISMC standards. One is that the BBA requires that states communicate information around quality and other areas with Medicaid enrollees. We know that health plans will be doing this, too.
We have let a contract for developing guidelines for states, incorporating all the good work that has been produced through projects like CAPS.
What do we know about communicating with enrollees around health and quality information. Jim McGee, who I think may be known to a number of you around the table, is putting together that technical manual for us.
We have another technical project on network adequacy, where we are helping to identify for states what methodologies are already used to assess the adequacy of provider networks, and to help states figure out how to implement that function.
We have a third contract out there as well. So, we are looking, now that the standards are out there, what is the mechanism for training, what is the mechanism for continuing to update these standards as well.
That is our quick run through QISMC and I would be happy to take any questions you might have.
DR. LUMPKIN: We have time for a few questions.
MS. COLTIN: Ann, I had a question regarding the BBA rule. You said that it set standards for states. Does it set standards for states just regarding managed care, or regarding all the mechanisms through which they deliver services to beneficiaries?
MS. PAGE: The BBA rule actually creates new acronyms, which is going to take a lot of getting used to.
Managed care entities are one new acronym, and that encompasses both primary care case management, as well as capitated forms, or traditional HMO forms.
So, there are provisions for state programs that pertain to both fee for service with case management programs, as well as MCOs.
The provisions, a lot of the provisions I just went through are in a special section of the BBA rule that talks about HMO contracts.
What is striking, what is just again a tremendous effect of the BBA statute, prior to the passage of the BBA statute, there was no provision in statute addressing a health plan's quality.
So, the entire statute, 1903M, for those of you who are familiar with that section, that talked about the rules that would govern how states had to contract with managed care organizations, the word quality was nowhere to be found in that statute.
As a result, the Medicaid regulations were quite slight and quite skimpy. There was a provision that talked about external quality review organizations, which was sort of analogous to the use of PROs on the Medicare side.
There were no statutory provisions saying how quality was supposed to be addressed.
MS. WARD: Related to your cultural competency and those pieces, how clear are you now, or going to be, related to access to professional translation and interpretation services, and how you evaluate the providers of that.
MS. PAGE: We do, I think, in the BBA language, we do say that the health plan is to assure culturally competent care.
At a minimum, it should provide languages -- written material -- in languages appropriate to the major population groups.
Then I think there is another provision somewhere that says this would include translation services.
That is it. We certainly are aware that there is a much, much, much bigger definition of cultural competency.
At this stage, in the writing of these standards, we are not able to identify objective sort of those that lent themselves to monitoring approaches, and those that we thought were reasonable for all areas of the country, all health plans.
It is a real challenge to figure out how to translate the wealth of information that is sort of growing up around cultural competency, how to translate that into standards that you could then monitor for compliance.
MS. WARD: Yes, I think that is another area where there is hopefully science and some more research.
I keep getting lots of anecdotal stories about the provider says to the plan, you are supposed to pay for this translator.
The plan says to the provider, you are supposed to include it in your costs, and nobody gets translation, because they are fighting over who is supposed to pay for it.
I was wondering if you are more clear about it, particularly in capitated states, is there an expectation that administrative capitation must include, when the person can't speak English, that they explained what is going to happen to them.
MS. PAGE: I think the conclusion that would be drawn, since we have standards that are applicable to the managed care organization, and the managed care organization has to meet the standards, that there is an obligation on the part of the MCO to do something to make sure that it meets that standard.
Whether it has addressed that area in its contract with its individual providers, I think, is up t the plan.
One way or the other, when it comes time for HCFA or states to monitor for compliance, we are not going to go to the individual provider and say, did you do this.
We are going to go to the health plan and say, show us the provisions that you have made to make sure this happens.
MS. WARD: Thank you.
DR. MC DONALD: I guess the question is, are there provisions which would encourage or facilitate sort of, I don't know, academic collaboration with some of the data and the research of Medicaid?
We had sort of a bad experience in Indiana, in that the public health department gave a grant to Bill Tierney, one of my colleagues, to do a study of what happens in the introduction of a Medicaid managed care program.
They would never let us have any of the data, which made it kind of a little bit harder to do the study.
There really seemed to be antipathy. I shouldn't be talking about my state; this is on the web, isn't it.
DR. LUMPKIN: Too late now.
MS. PAGE: There are pretty strict requirements for the degree to which state Medicaid agencies have to protect the release of data.
DR. MC DONALD: I know, but that, I think, works - - that is fair and right. It seemed to us, one could perceive that it is a way to keep from having new discoveries made that might not be -- I don't want to say this wrong -- it seemed that it was self indulgent rather than it was protecting the patient.
MS. PAGE: The state didn't release?
DR. MC DONALD: It is different from Medicare. It was just very uncooperative, and this was with the other part of the state having funded a study to see the deleterious or positive effects of the managed care plan.
It would be nice if there was something in the regs that would kind of encourage a good exploration of things.
MS. PAGE: As you can imagine, conversations around data and patient data, the sharing of patient data --
DR. MC DONALD: That is not an issue. There are proper safeguards in many other venues for the safeguard of it. It seemed like a dodge to me, perhaps.
DR. STARFIELD: I don't have any questions, but I just want to congratulate you on what you are doing. I think you have pushed the field of quality way ahead.
MS. PAGE: Thank you. That is good to hear.
DR. IEZZONI: I agree, Ann, and it is wonderful to see your enthusiasm. You obviously are really excited about this.
I would just like to raise a cautionary note, though, and that is that our subcommittee on populations at the NCVHS over the last year, has gone out to Phoenix, Arizona, has held hearings in Boston, we have held three hearings in Washington about Medicaid managed care.
As I listen to your vision, it bears no resemblance to the capabilities of what we saw out there out in the field. Hortensia, do you agree with me?
It is really striking how this looks great, but the capacity to be able to pull this off, it may exist in certain venues, but we did not see it, and we did not hear about it out there, hearing from people out in the community.
I don't have a specific question. I just wanted to point that out, and especially raise an example of a care provider that we heard about from the middle of Massachusetts.
She came and gave a presentation in Boston last April when we had our hearings. She hardly has a computer kind of in her office. Yet, she is a major care provider for Medicaid recipients.
She was just talking about, okay, do I spend the money to buy the computer, or do I spend the money on these other things that she really needs to be able to provide the care.
I just think there is going to have to be some way for your organization to do your own monitoring to see whether your own standards -- I mean, you are asking states to look at this 10 percent improvement.
For you to really go out and kind of visit within the community and really figure out where the technical support and resources need to be put in to achieve the vision that you described.
One other piece is that we heard repeatedly throughout our hearings is that, even though you are giving satellite transmissions and informing state Medicaid folks, there is not the technical expertise out there of analysts and well-trained people in the field to be able to do the research, to do the quality improvement, however you describe the studies that you are describing right now. There is just not the staff out there to do this.
Our subcommittee has been trying to think about, what kind of training programs, additional grants to students to attend schools of public health or undergraduate degrees or whatever, to try to build a body of people who will be analysts and able to do the kinds of studies that you are describing.
DR. AMARO: I just wanted to say that it sounds wonderful, but there is a huge gap between what this will require and what we saw out in the field.
MS. PAGE: Are you talking about the gap at state Medicaid agencies or health plans that contract with Medicaid or both?
DR. LUMPKIN: Provider level.
DR. AMARO: We talked to all those people, including the state.
DR. IEZZONI: Right, including the state.
MS. PAGE: So, it is not that the health plans don't typically have the capacity; it is the state that doesn't have the capacity? I just want to make sure which level we are talking about.
DR. IEZZONI: I think it is variable, but I think it is both. It is all of it.
DR. AMARO: An example is, we asked a lot about the collection of data on race and ethnicity, for example, very simple.
I think for the most part we got the answer that this was not something available to them. Even the standard around non-discrimination, it would be hard right now, with the current system, to do any analysis of whether people receive different levels of service, which was something that we were interested in seeing, whether that was something that plans did or that the state monitored.
The other area that came up a lot was this issue of delegation. I was glad to see that, especially with respect to behavioral health areas, substance abuse and mental health services.
It just seemed that once the subcontracts went out, it sort of fell in some black hole, and it was very hard to get any reporting back to assess at all what was being done.
It is not clear what sort of practice guidelines and how those have come up, and whether it is really based on scientific evidence, those standards of care for those, and the authorization issues are immense in those.
I was glad to see that was included as an area, especially with mental health and substance abuse. It needs a lot of work.
MS. PAGE: I think that is one of the reasons that we have stressed to make this voluntary. It does therefore set out a course of action.
If states are in a predicament where a lot of this is new to them or they have not -- I think the biggest contribution that QISMC can make to the states is to help them figure out how these things fit together.
It is a yard stick by which they could assess, okay, here is what we are doing now and here is what HCFA is telling us is a good thing to do. How much more do we need.
It is the kind of thing that can be used for legislative requests, the fact that some of this is translated into counterparts in the regulation that states what they now have to do.
Some of the ways in which HCFA is trying to provide more flexibility, we have another rule coming out.
There was a portion of the balanced budget act that addressed external quality review organizations. Prior to the BBA, there was never any definition as to what external quality review was to consist of.
The statute said who could do it but never said what the heck it was. So, in the BBA we are charged with saying what it can do.
The BBA, however, has therefore provided tremendous flexibility. One, it has opened up who could be external quality review organizations. It is no longer a PRO or an accrediting body.
It could, for example, be University Health Services Research Centers. We are providing a 75 percent match now to all of those functions.
So, for external quality review, states only have to pick up 25 percent of the cost. There is greater flexibility in the rule -- I can't exactly say what we think that rule is going to look like, but I think HCFA is intending to recognize, we do know what states use their EQROs for.
We actually did another survey to verify what we think states use them for. They use them to validate performance measures or sometimes to calculate performance measures, to verify studies, but sometimes to do studies.
One option open to HCFA is to say, these might be all appropriate functions. So, if the health plan doesn't have the capacity to do this and you, state, are limited in your capacity, use your EQRO, and you have only got to pick up 25 percent of the cost.
There is, I think, some tremendous flexibility put into the BBA, that will allow a greater federal commitment of dollars to support these kinds of activities.
DR. LUMPKIN: Just one last quick question, and then we are going to have to move on.
Did I hear you, that this only applies to Medicaid and will not apply to Medicare?
MS. PAGE: My presentation primarily was talking about how it would work in Medicaid, but all these standards are identical for Medicaid and Medicare.
DR. LUMPKIN: What is the time frame for that? Is that tied in with the BBA regulations?
MS. PAGE: No. QISMC -- I hate speaking on Medicare because I am on the Medicaid side of the house -- but Medicare did have their counterpart published as an interim final rule.
Medicare has said that they would apply these as a contracting requirement, which I believe would become effective January 1. Kathy, can you tell me, since you are on the receiving end of it?
The intent is these standards, plus/minus however they get modified through the comment process on the rule making, would go into effect for Medicare January 1.
DR. LUMPKIN: And they would be enforced by the delegated contracting agencies, by the 1864 agencies, or by a single state agency?
MS. PAGE: For Medicare, they would be enforced by the Medicare oversight process, the regional offices that go out and review, and the central office, HCFA staff that review contract compliance.
For Medicaid, they would be overseen by the state Medicaid agency or its agent, which could be any QRO.
DR. LUMPKIN: Thank you. We are going to have to move on because we are 25 minutes behind schedule and we do have out next speaker here.
Dr. Lurie, we welcome you in your new capacity.
DR. LURIE: Good morning; thanks. Thanks for the opportunity to come and talk to you. As some of you know, I have been here now for all of two months now, so I am still getting my hands around all the moving parts of this job and how it relates to the really critical work that the National Center for Mental Health Statistics has, and the role of data in general.
Those of you who know me from before know that I come from this philosophy of data is power or, as one o my health services research friends wrote to me last year when I was particularly upset about something, said, don't get mad, get data. That has subsequently become my working motto.
Having said that, let me share with you a little bit about where some of the focus of our office is.
As I think all of you know, Dr. Satcher has articulated quite well what he talks about as his evolving set of priorities.
I think those are things that are all familiar to you; is that right? Let me see if I can do them without notes.
He has really articulated six areas, including a healthy start for every child and the various things involved in that, and I can answer questions about any of those, mental health, eliminating disparities attributable with race and ethnicity, global health, and engaging the public and individuals in creating a climate that encourages responsible health behaviors, broadly defined.
That has really become very much -- those areas have really very much become the focus of most of the activities in our office.
In that regard, one of my major responsibilities and one of my major efforts now is really on the effort to eliminate disparities.
As you may know or you may recall, a lot of the mechanisms for doing this has always been through the Healthy People process.
Healthy People 2000 is just winding up and we are in the process of evaluating our progress toward meeting the Healthy People goals.
At the same time, as you know and discussed yesterday, we are very much engaged in the Healthy People 2010.
One of the major differences, aside from the number of objectives and all these other things, is really the move for a single target for all populations, rather than different targets for different populations.
This will be key to some of the strategy for eliminating disparities.
As I have come into this and looked at what the plans have been and the mechanisms have been to think about how we are going to eliminate disparities -- and the disparities initiative focuses again on a handful of clinical areas which are infant mortality, diabetes, cardiovascular disease, HIV/AIDS, and cancer prevention and treatment. I think I got them all; is that right, Jim?
As we do that, one of the things that has just been crystal clear to me is that our capacity to measure, other than at a very national level, if incredibly uneven.
Yet, if we are going to pull this off, I believe very fervently that we have to have ownership of problems and ownership of data at a state and local level, and as close to a community level as possible.
I would really love to engage you in some more discussion about how we get there. Some states can do it, some communities can do it. It is very uneven.
Some are very far from being able to do it, and obviously, we don't have an infrastructure in this country that will connect what our national needs are down to a state, local, community level, in order for us to do that.
This includes both being able to sort of measure where we are with any of these disparities and then obviously, beyond that, then, start to approach the kind of measurement and data collection that we need in an ongoing way to look at the root causes of these disparities.
Somewhat connected to this and to Healthy People has also been, and will be, the anticipated IOM report on recommendations for a small set of sentinel health objectives for the country.
As you know, Healthy People has now grown to 500- some-odd goals and objectives. The office had asked the IOM to come up with two or more recommended very small sets of sentinel objectives, so that we could really get our hands around some more focused goals and be able to communicate with each other and the American public more broadly around a set of focused goals that everybody, ultimately, ought to be able to know and identify with. That is going to take some work.
One of the struggles that I know that group is having, when I spoke with them a couple of weeks ago, is again this same issue about data.
Do we pick out things that we can measure already, all the way along this continuum, or do we use the sentinel health measures and objectives to really drive us and our data systems to make that commitment, to be able to measure all the way down to a community level.
That is something that I think we will be hearing more about as we see what the group comes up with, but something that I know you are thinking about and I would like you to think more about.
The other needs that I have really seen, and I know again, that you have discussed some of these, just since I have been on this job, is both the capacity and the need to really expand our capability with regard to I guess what I would broadly describe as geocoding.
The need for us to do this, both to understand better the epidemiology of different kinds of health problems, and to be sure that our federal and non-federal resources sort of track with that epidemiology is really critical.
It also, ultimately, I see from my position now, is sort of a set of coordination and accountability tools for government and for us more broadly. Again, I would love to engage you in some more discussions about that.
You just heard from HCFA about QISMC, which I think is a very, very exciting development, and I think we are all very pleased with it.
I think it opens up a whole host of other questions about the data needs and data interface of managed care and integrated health systems, and other public program interfaces, other government public program interfaces, in terms of helping us to do our job better down the road.
We heard very briefly just now, for example, about even the difficulty that Medicaid programs and managed care programs have now, getting data on race and ethnicity.
If you now bend that down a few more steps into thinking about, for example, where my consortium of managed care organizations want to work with a school system around immunization, or treating asthma or any of these other things, the set of both data and data interface needs, and data privacy needs, obviously strike you in the face.
It is again a place where we have got a lot more thinking and clarifying to do, and a place that I have particular interest in wanting to move the dialogue along further.
Then finally, obviously, the need to do program evaluation across the board, whether it be CHIP, which I know you have had a lot of discussion on, or other evolving programs are really key.
Part and parcel with that will be obviously the development of the new tools that we need to do that. I know that obviously there is a lot of discussion about measuring for CHIP, for example, child health status and child health outcome measures.
I think I just caught the tail end of a similar discussion, I think, about cultural competence and how it is that we measure and monitor that as time goes on. So, the new tool development is sort of part of our focus and part of the interface that I would like to have with this group over time. It will be key.
That is sort of the short list of what I see as sort of my priorities, and in particular needs in the data area. I thought I would use the rest of our time to see what kind of questions you had or what discussion we might engage in.
DR. AMARO: I think that the focus on eliminating racial and ethnic disparities is really going to need to push the data system limitations.
The issues are huge. I feel like there is great resistance. I think we have been talking about this for years. I think at least for 20 years I have gone to meetings with other people talking about this.
You know, the usual answers throughout time have been, well, we don't have money to do this. So, either systems are going to have to reprioritize what current dollars are used for, or there are going to have to be additional dollars.
I am not sure how this initiative is going to push on that, but clearly, without really changing the system, the data systems that we have, we are not going to be able to measure, to track.
Of course you know this, when we looked at the Healthy People 2010, which is a great improvement over the previous one and over the 1985 Secretary's report, you know, we have seen some progress.
Basically, with the current methodologies we have, we aren't able to get to certain populations. There are a number of issues, that being one of them.
DR. LURIE: I can't agree with you more. Since I have come and really thought about, in the couple of years that I am here, what can I accomplish, one of the most important things seems to me to be to move forward with a system of data collection that gets so embedded in our public health system that when this initiative goes away or has a different level of priority, we still have the capacity to shine light on areas that are problematic.
I agree with you entirely on re-prioritizing and a new set of investments in this. Some of that has to come from inside, quite honestly. Some of it, I think, has to come from a new kind of community-based advocacy for collecting this kind of data and reporting this kind of data.
Some of it also has to do with engaging partners in a very different way, in their willingness to look at this.
Even as I have started to have discussions with a number of managed care organizations, a number of them have really expressed a strong desire, at this point, to have this.
Some of them are collecting race/ethnicity data post-enrollment, and there have been a lot of pleas to really explore what it will take to sort of turn the key as such, to be able to connect, particularly Medicare and Medicaid enrollment and data on race/ethnicity.
You know, one of the other things that probably should have been obvious to me before I started here, but wasn't, is also the other parts of the health care system that are really disconnected from the department and, thus, our work there.
So, for example, large populations are obviously cared for within the VA and the Department of Defense.
Their data issues and data needs and data systems are very different. There is not any agreed-upon uniformity about how we collect and measure even things as basic as race and ethnicity.
I think that is another area for work, if we want to talk about reaching the whole population.
DR. STARFIELD: This committee has been interested in not only the race/ethnicity disparities but also the SES disparities.
We heard at one of our hearings -- I can't remember whether it was the subcommittee or the whole committee -- that HCFA does not want to collect data on income, for example, because they think that might interfere with people's willingness to receive services, or their sensitivity about divulging their income. Do you have any comments about that from your own clinical experience?
DR. LURIE: I guess from my own clinical experience and my own research experience, people are often very reluctant to divulge other than in broad categories.
I agree with you, that collecting this data is key. It is key to understanding some of the other kinds of disparities issues, and it is a whole set of disparities issues in itself, that requires a lot of attention.
I wonder some still about how we could get creative with pushing on some of our existing tools to get to somewhat better definitions of income, again, exploring further whether there is other potential in geocoding, or whether we can identify some sentinel areas and sentinel communities and sentinel populations where we really push in this regard.
Beyond that, I agree with you. I think I am in the same place that this committee has been in, that you are, Barbara, in terms of feeling a little stuck in how to move forward, but it is clearly important.
DR. FRIEDMAN: I do think that Barbara's point is well taken, and what you mentioned about the possibilities of sentinel communities or sentinel data systems for collecting those kinds of data.
It does seem, with the increasing emphasis on geocoding, particularly geocoding in order to provide economic position data, small area data, it is a very indirect means of addressing the problem.
The data certainly have proved extremely valuable in the United Kingdom, and they have got a long history of being able to collect the data. I think it is really worth giving it a shot.
DR. LURIE: I agree with you. One of the things I have been listening to and learning about since I have been here is sort of the CDC's early plans for developing a monitoring capability, again, from a set of sentinel communities and a set of sentinel health practices.
I think it is really a place to push in terms of exploring the feasibility in doing this, and also confirming its usefulness.
Certainly when we talked in the data policy committee, it was a set of discussions that came up, and I think will continue to come up, and the more quarters it is heard from, the better.
DR. IEZZONI: One area, Nikki, where I am obviously interested is in disability. One of the categories that Healthy People 2010 is looking at is disability, and how does one define that.
We do not have anything comparable to ICD-IX CM diagnostic information for uniformly categorizing functional impairments or deficits.
Is that something that your group will be thinking about, maybe, how to go about uniformly categorizing functional impairments that you could use to look at disability status?
DR. LURIE: I think it is a set of issues that we would use in a moment if we had the tools. Our office isn't necessarily set up to do that, but we would certainly encourage and promote any and all parties who could contribute in a meaningful way to this.
We don't need to talk about the importance of this. I think everybody is convinced and it is just an area that really needs to move forward.
DR. IEZZONI: I guess a specific question is about ICIDH. What the title now is, international classification of impairments, disabilities and handicap, has been used around the world but never in the United States.
It is currently undergoing testing, after having had a substantial revision. I have some questions about aspects of it from having reviewed it, but I nonetheless think that it is something that we need to look at very seriously, as a basis for us to fill that place holder that I understand does exist in some of the data sets for a functional status measure.
MR. SCANLON: Our office, Lisa, as you know, and ASPE, our long-term care and disability policy area, is doing some research in terms of measures and their use, and giving comparable estimates of ADLs and this sort of thing, as well.
Maybe we could arrange briefing for the subcommittee, maybe, on where the research is heading in this area.
DR. IEZZONI: That is a good idea. We should do that.
DR. LURIE: Would you invite me?
MR. SCANLON: We will invite Dr. Lurie
DR. LURIE: I agree with you. One of the things I have been listening to and learning about since I have been here is sort of the CDC's early plans for developing a monitoring capability, again, from a set of sentinel communities and a set of sentinel health practices.
I think it is really a place to push in terms of exploring the feasibility in doing this, and also confirming its usefulness.
Certainly when we talked in the data policy committee, it was a set of discussions that came up, and I think will continue to come up, and the more quarters it is heard from, the better.
DR. IEZZONI: One area, Nikki, where I am obviously interested is in disability. One of the categories that Healthy People 2010 is looking at is disability, and how does one define that.
We do not have anything comparable to ICD-IX CM diagnostic information for uniformly categorizing functional impairments or deficits.
Is that something that your group will be thinking about, maybe, how to go about uniformly categorizing functional impairments that you could use to look at disability status?
DR. LURIE: I think it is a set of issues that we would use in a moment if we had the tools. Our office isn't necessarily set up to do that, but we would certainly encourage and promote any and all parties who could contribute in a meaningful way to this.
We don't need to talk about the importance of this. I think everybody is convinced and it is just an area that really needs to move forward.
DR. IEZZONI: I guess a specific question is about ICIDH. What the title now is, international classification of impairments, disabilities and handicap, has been used around the world but never in the United States.
It is currently undergoing testing, after having had a substantial revision. I have some questions about aspects of it from having reviewed it, but I nonetheless think that it is something that we need to look at very seriously, as a basis for us to fill that place holder that I understand does exist in some of the data sets for a functional status measure.
MR. SCANLON: Our office, Lisa, as you know, and ASPE, our long-term care and disability policy area, is doing some research in terms of measures and their use, and giving comparable estimates of ADLs and this sort of thing, as well.
Maybe we could arrange briefing for the subcommittee, maybe, on where the research is heading in this area.
DR. IEZZONI: That is a good idea. We should do that.
DR. LURIE: Would you invite me?
MR. SCANLON: We will invite Dr. Lurie.
DR. LURIE: Thank you. Thank you for the opportunity to converse.
DR. LUMPKIN: Thank you very much for coming. I am going to make a slight change in the agenda. Jeff, I think -- what time is your flight?
MR. BLAIR: It leaves at 2:55. If I can, I would like to be done at 1:30, if possible.
DR. LUMPKIN: In that case, then, we will take the report from the computerized patient group now and then take your report after lunch.
MR. BLAIR: To be succinct, we had four topics that we endeavored to pursue. One was for us to review the letter that Michael Fitzmaurice has led, and prepared to go out to invite attendees to the hearings on December 8 and 9.
There were a number of suggestions to clarify the intent and to help us focus a little bit better. Michael has included that in the letter that would be going out.
The second topic was whether or not we needed to clarify what our mission was, what our charter was, in terms of modifying the name of our work group.
There were a few suggestions on that. There was the decision to defer that decision until after Don Detmer could be part of that discussion because he had a special interest in that.
One of the things we did decide to do was eliminate any reference to the name of our work group in the letter that goes out, so that it wouldn't be confusing to those folks who were going to be testifying, or preparing their testimony.
The third area was, we took some time to review the profiles of standards and data sets and code sets that were in the inventory of standards, so that we had a little better understanding of what value they might have as a resource, and what limitations and weaknesses they might also provide, so that the rest of the feeling would have a feeling for what we might need to do to analyze that material in the future or enhance it or build upon it.
The last topic we did not get to. We were going to try to focus a little bit more on our ultimate objective of the nature of the recommendations or the format of the recommendations that we would be preparing by August of 2000.
I think that, for the most part, the work group felt that we had at least indirectly addressed a lot of those issues, just in the preparation of the letter, and in the consideration of the name change for the work group.
Before I close, Michael, did you have any other comments?
DR. FITZMAURICE: No, Jeff, I think you covered it very well.
MR. BLAIR: Simon, are you here? Oh, he had to leave.
DR. LUMPKIN: You mentioned the hearing on December 8 and 9.
MR. BLAIR: Correct. The purpose of the hearings on December 8 and 9 will be to solicit feedback from a diversity of groups and organizations on whether our focus for our work plan for the next 18 months is on target.
DR. LUMPKIN: Okay, thank you. Are there any questions?
At this point, maybe I can give just a brief report from the subcommittee on standards and security.
DR. LUMPKIN: I think that everyone is familiar with the status on the update of the HIPAA regulations. We had that in full committee.
We did have a presentation on the claims attachment standards. It appears that the 277 and the 275 standards, the 277 for a request for information and the 275 standard for a claims attachment has been prepared by the SDO, and they expect those to be published in draft form within the next week.
After that process, the development of an NPRM will begin, and will begin to go into the department clearance within the next few months.
We had some discussion about the need for a hearing. We have asked the work group to discuss whether or not there is a need for hearing.
There will be some six content attachments that were discussed. I only have four of them. Do you have them? You can read your list because my notes aren't as complete.
MS. FYFFE: Okay, ambulance, emergency room notes, rehabilitation, lab results, medications, and the sixth category was other types of notes.
DR. LUMPKIN: That is really narrative notes. Those will be the initial ones. There was some concern about whether or not the people who might be most closely involved, such as emergency physicians and ambulance companies and those folks had had adequate input into the SDO process.
So, we have asked the work group to re-evaluate that. If there is an assessment that that has not occurred, then we may suggest that there be some hearings by the subcommittee, to at least give them some chance to have some input and discussion on that.
We discussed the issue of maintenance and upkeep on transaction standards. Certainly that still is under development.
We also discussed the issue of enforcement and felt that it was a little bit premature to begin to hold hearings, since it is not clear how or whether or not enforcement will be a major mechanism to implement these standards.
That is the report of the subcommittee. Are there any questions on that?
Perhaps if we can move ahead to -- in case you haven't gotten the impression, I think we are moving fairly rapidly through the agenda.
My guess is that we can probably finish up by 1:00 or 1:15 at the latest. Do people want to take a lunch break? No, I didn't think so.
For the privacy meeting, Kathy?
MS. FYFFE: The subcommittee on privacy and confidentiality met yesterday. Much of the meeting was a presentation by two people from the National Association of Insurance Commissioners, Wendy Pello from that association, who is legislative counsel in the federal health affairs area, and also Jennifer Cook, who is assistant counsel for health policy.
They reviewed a document called The Health Information Privacy Model Act, which is a model that has been approved by the National Association of Insurance Commissioners.
This means that it will be a model potentially used by all the states for introduction of state laws pertaining to health information privacy.
The states, at their discretion, can adopt the whole model or they can adopt parts of the model, or modify it, or at their discretion, may do nothing in this area.
There was discussion after the presentation by these two folks about some of the problems or deficiencies in the model.
A point has been raised as to whether or not NCVHS might be interested in making formal comments or send a letter to the National Association of Insurance Commissioners.
What I am going to suggest here is that the subcommittee on privacy talk through a conference call, perhaps, over the next couple of weeks, to determine whether we want to make a recommendation to the whole committee on that issue.
The other things that transpired during the subcommittee meeting was a discussion of our next meeting in February and what the activities might include.
There is a possibility of having panel discussions with representatives of consumers, and also representatives who could talk about prescription of pharmaceutical processing. Is there anything you would like to add to that?
MR. SCANLON: Possibly employers, I think.
MS. FYFFE: Employers, yes.
MR. SCANLON: Employer use of identifiable health information. That could be done on the same day.
MS. FYFFE: The details on all of that have to be worked out.
MS. GREENBERG: That would be February 2; right? This is what was tentatively agreed at the executive subcommittee, that the full committee meeting will be the 3rd and the 4th and the subcommittee on privacy and confidentiality would meet on the 2nd.
There is also the possibility of a half-day meeting of another subcommittee on the 2nd as well. We had blocked out the three days.
MR. SCANLON: I think the one other point was the EU directive.
MS. FYFFE: Yes, some discussion of the EU directive. Bob, would you like to say anything about that?
MR. GELLMAN: Yes, there was discussion of the EU directive.
MS. FYFFE: Yes. I am done.
MS. GREENBERG: I just wanted to remind you -- I wasn't able to sit in on that subcommittee, where I did sit in, I know that I did mention this.
I know that a lot of these subcommittees and work groups are thinking in terms of conference calls to try to move their jobs along, for a lot of reasons.
If any of these conference calls are going to be used for a deliberative process, such as deliberating about whether you want to make recommendations or comments, then we will want to announce them, if we have sufficient time, in the Federal Register. Otherwise, we will do it on the web site, and make provisions for the public to participate.
MS. FYFFE: I will seek guidance from the subcommittee on all of that.
DR. LUMPKIN: Any questions or comments for the subcommittee. Jeff?
MR. BLAIR: There is an e mail box that you all set up, so that any time we send e mail messages to each other, we could have that go to -- there was a document set out.
I just wanted to indicate that I think that is a very constructive thing to do, so that we have a record of all e mail notices that are going around from the standpoint of having that record for anybody that might be interested.
DR. LUMPKIN: I just want to emphasize, though, that no one monitors that e mail box. It is an archival system, not for communication.
MS. GREENBERG: If anyone needs refreshing as to what the e mail address is, it is in tab I, the very last page, under 12.
DR. LUMPKIN: Dan, did you want to comment on the infrastructure work group meeting yesterday?
DR. FRIEDMAN: Very briefly, we had our first non- virtual meeting of the National Health Information Infrastructure Work Group.
Mary Jo Deering has really provided absolutely super support, has drafted a charge based on the concept paper.
We basically reviewed the charge and she is going to redraft it and she may have already done so. As a matter of fact, I think she did, because I got an e mail from her last night before she left for England. We will review that on January 6.
There were a series of activities, potential activities that were delineated. Essentially the first activity, I think, that we all pretty much agreed on -- I am looking at Jeff and John here since they were at that meeting, and Barbara was there, too -- was going through that paper and trying to set down some of our own alternative definitions of some of the phrases that we put on there.
As we were discussing the paper, it became clear that on some of them we really weren't exactly sure what we were talking about, and it was going to be kind of hard to make any real progress until we could, if not reach agreement, at least pin down where the disagreements were.
The next activity would be developing a matrix of activities relating to the national health information structure, and then analyzing the matrix to identify progress and areas that need refocusing.
We also discussed about trying to assemble material relating to health information infrastructure activities in other countries.
DR. LUMPKIN: Thank you. Questions?
Okay, report on the workshop on public health and health services research.
MS. GREENBERG: I will just give kind of a brief summary and then ask any of the members who participated to chime in, or give your assessment of the two-day meeting.
This is a meeting that I have been briefing you on, I guess we have been planning it for over a year. So, we were very pleased that, in fact, it did take place on November 2 and 3 here in Washington, D.C.
We had 83 persons who participated. There were, I believe, six NCVHS members, and I really appreciate all of your participation.
In addition, I think two members were able to facilitate their organization facilitation, someone at Harvard Pilgrim, Dr. Platt, and also somebody from Kaiser. So, we really appreciated the support of the committee.
The agenda is in H, and this was essentially the final agenda, so it pretty much reflects what took place those two days.
We had several objectives and I think we felt that we made progress in those objectives. One of those objectives was really educational, to try to begin or continue discussions to the extent where people were on the spectrum of understanding about what HIPAA is and what its implications are and could be for public health and health services research.
In sort of a broad framework, also, the whole area of developing health data standards, of which the HIPAA process has brought light to that, but many of these activities in trying to standardize health data, both on encounters and clinical data obviously preceded HIPAA, and many of the activities that are taking place around the table.
I think we had like a broad educational objective and I feel that we, you know, made some progress in that area.
It certainly was very obvious that this type of educational effort was and is needed, and much more is definitely needed, both on the potential implications of what is happening under HIPAA as well as on the whole standards development process.
One of the things that we did to try to advance the educational agenda was to develop some background papers, both on the possible impacts of HIPAA on public health, as well as related standardization issues that impact on health services research.
Those papers at this point are all draft discussion documents, but we are going to be putting them, as well as all of the slides or power point presentations, or however people made their presentations -- we did have a number of panels as you can see.
We are going to be -- there is also background material. There is a lot of material. We are going to be putting that all up on the Lewin web site. The Lewin group was our contractor for running the meeting.
At least in the short term, while that contract is still in place, as we are preparing final recommendations and reports coming out of the meeting, that is www.lewin.com/hipaa.
So, we are sending letters to everyone who participated, everyone who intended to participate but didn't get there, people who weren't able to participate, and people who don't even know they wanted to participate but they would have participated, maybe, if they had known about it.
We are trying to let people know about this, in other words. While the main purpose is mainly to make these all available electronically to the people who participated in the meeting, we hope that the word will spread and others will also look at them, and provide feedback, because they are still draft discussion documents and they can still be modified before they are finalized, at least as part of this contract. So, I wanted to let you know that.
Another objective was to begin to start identifying data needs. We did a little bit of that in the background papers, both by calling attention to some of the comments that were made through the comment period on particularly the transactions, MPRM and also some work that has been done comparing the well-known NCVHS core data elements to what is currently in the relevant transactions.
I would say that we just really sort of nibbled on the edges of this. Part of the problem people saw was that a lot of them really found it very difficult to understand what is in the standards now, so that how might you want to improve them or how might you want to expand them.
Although there are pieces of this, the implementation guide is up on the web site, they are not all that accessible to people in the sense of being really understandable and user friendly if you are not familiar with these transactions.
There are things that NUCC has done and NUBC has done, but there is really a need for a user friendly -- I don't necessarily want to use the word data dictionary, but explication of what is in these standards currently, at least that might be of interest to public health and health services research.
This is a need that we knew about and it was many times mentioned at the meeting, and is something we are looking to how we would like to fulfill that.
As for a third objective, it was considering representation or expanding representation in both content committees and standard development organizations.
There was support for that. There were some recommendations on how that might be done. This is something that we will be pursuing with the participants.
Also, this is the key word of this morning, and it certainly fits this report, and that is the whole issue of an infrastructure to support this, to support both the identification of data needs and then the communication of these, the representation of these into the standards process.
Right now, I think one of the most useful panels we had -- and I have gotten that feedback from other participants -- is that we had a panel of all the standards, of the NUCC, the NUBC, HL7, X12, and we also heard from HCFA about the ongoing discussion about how these standards would be maintained.
People found that very informative. There was a great deal of encouragement from the HL7 and X12 representatives for more participation.
We recognize realistically we are probably not going to ever get enormous numbers of people from public health or health service research communities to be participating in these processes.
We felt that if we can organize -- this came out loud and clear the last afternoon -- with a recommendation for some type of a consortium to be formed to both identify needs and to organize the representation to these standards organization to try to begin to get some of these needs met, through the standards, both through the current transaction standards as well as separate, perhaps, claims attachment standards, and also possibly what is already going on in immunization and a few other areas, developing separate public health transactions, but in a standardized way using HL7 and X12.
So, the two organizations, I would say, that really stepped up to the plate at the end of the last afternoon about really wanting to participate in helping to organize this consortium, were the National Association of Health Data Organizations and the National Association of Public Health Statistics and Information Systems.
So, we are going to be continuing discussions with them. We very much appreciated AHCPR's participation, and support for the meeting, and we are working closely with them.
We hope to bring in AHSR. They are undergoing new management, so we will be communicating with them on that.
CSTE expressed an interest. In fact, any of the organizations that were there that are interested, we are going to try to involve them in this consortium effort, and those who weren't there who might be interested.
So, it is a very broad based effort, but very much focused on not just the national needs, but state and local needs as well, which the two organizations, NAHDO and NAPHSIS reflect some of that.
That is what I have to report. I would really welcome additional comments or input from others who participated.
DR. FITZMAURICE: A couple of comments. One is that I think Marjorie is really to be congratulated. Not only did I think it was a good idea when I heard about it, and I worked hard to get AHCPR to get some of the credit that is due, and NCHS, but it was a good opportunity to be among people, not all of whom knew what HIPAA was.
I know Bill Braithwaite goes out and talks a lot, and it is common when we talk, how many people know HIPAA, well a year and a half ago, it was maybe 10 percent in an audience of maybe 180, raised their hands. Now it is commonly 70 or 80 percent.
Well, 70 or 80 percent of the hands wouldn't have gone up if we had asked at this meeting, but they were interested in finding out how they could get better data for their purposes, whether it be public health or health services research.
The other thing I was impressed about and enjoyed at the meeting was that they were doers. They wanted to get together.
They thought, after learning what HIPAA was about, that there ought to be representation on the content committees, the people who determine the data content of these standards, from public health, from health services research.
Because they don't all have the funds to travel to these standards meetings, form a consortium that NAHDO and NAPHSIS, when they get together, to try to provide a consortium of input from people to say, here is what we need. Here is what we need for our own purposes, of public health or health services research.
Those two points, informing people of what is going on and how it can benefit them, people who really need to know how to leverage resources, because they don't have an awful lot of resources, and from the point of view that, having seen it, they acted to begin to form a consortium to apply that lever. It was a very good meeting, Marjorie.
MS. GREENBERG: Thank you, Mike. The participants are the ones who made it good.
DR. STARFIELD: Marjorie did a great job with the meeting and also with the presentation. I don't have anything to add to that, except the observation that health services researchers were hardly represented. There were more presenters from health services research than there were participants in the meeting.
The president was supposed to come from AHSR and wasn't there. Is there anything we can do to stimulate interest among that community, to take part in this activity?
MS. GREENBERG: This is an area we have to work on. We have some plans. Those of you who are active -- I know we have several members on the committee in AHSR -- we really welcome your encouragement here.
I think there is going to be new direction there and I hope that we will be able to bring them in.
One thing, I know Ann Alexhauser, who wrote the paper on the standards and relevance for health services research, she said it was crystal clear to her at the meeting -- which was another one of the objectives -- that public health and health services research had very overlapping and comparable needs.
They might look at information somewhat differently, but definitely, there was a lot of ground for collaboration.
DR. FITZMAURICE: Barbara, in response to your comments, I will make a call to make sure that cooperation and attendance will be more positive in the future.
DR. MC DONALD: I have to reinforce all the other good statements. It was also a cozy meeting. It was highly subscribed. So, it was a good thing those health service researchers didn't crowd in on top of those other bodies in the room.
MR. SCANLON: There would have been a food fight.
MS. GREENBERG: I intentionally didn't mention that part.
DR. MC DONALD: Actually, it adds energy to a meeting, or heat; I don't know which.
I wanted to also just comment, those breakouts, in our breakout session there was a strong interest in doing public health with or without HIPAA.
You might have mentioned that already, but there was a clear public health mission, some stuff that they could get on the coattails of HIPAA, and some stuff they just ought to do. It kind of rang with this infrastructure thing a little bit, too.
DR. FRIEDMAN: Again, I think it was an excellent session. I think you really did a terrific job, Marjorie; I really do.
I think that it is going to be crucial, whether it is NCHS or CDC or whoever, but to follow up both with those individuals as well as on that consortium idea. I thought that was just a terrific development.
MS. GREENBERG: John was actually on the program, and we appreciated that as well.
DR. LUMPKIN: Well, ditto. I thought particularly the panel on the first morning was superb. [Laughter.]
Any other questions?
Next meeting?
MS. GREENBERG: Do you want me to just review what we are talking about for the agenda in February?
DR. LUMPKIN: Sure.
MS. GREENBERG: The next full committee meeting is February 3 and 4, as we said, with the subcommittee on privacy and confidentiality meeting on the 2nd and possibly one or more further subcommittee working sessions.
One of the areas that I think John raised at our last meeting, our September meeting, and we made some additional progress on and we are planning to put together for the February agenda, is probably two panels related to public health surveillance, the standards for public health surveillance.
One will be more broadly kind of covering the general area of public health surveillance, and Dan could comment on that if he wants to, and then another one more specifically on the standards that have been developed around immunization and the experience of several states, including Illinois, working with a vendor, et cetera.
I don't know if either of you want to say anything about that.
MR. BLAIR: I expect that our work group, our CPR work group, will probably want to have hearings as well, more focused hearings, in that February session.
We will probably be able to determine exactly what the focus is after our December session, but if it is possible for you to include a block of time for us on the agenda, for February the 2nd, 3rd or 4th?
DR. LUMPKIN: Is that for hearings before the full committee or hearings for the subcommittee, or I am sorry, the work group.
MR. BLAIR: The work group.
MS. GREENBERG: How many were you thinking about? Generally, we aren't able to accommodate, on the two days, more than about a two hour, probably, session for the subcommittee or work group break out session. Were you thinking of something on that order, or something more extensive?
MR. BLAIR: To be honest, Marjorie, we hadn't discussed it in detail. If you could allow two hours, we would be grateful for that.
I will be back on the 19th or 20th. Will that be early enough for me to confer with you?
MS. GREENBERG: Are you talking about November?
MR. BLAIR: Yes, November, in other words, about a week from now. Maybe Simon and Michael and maybe Bill Braithwaite could kind of -- we could have a conference call in terms of what we envision.
I am just anticipating that we will probably want to take advantage of that date.
DR. LUMPKIN: I think you will be able to have a two-hour time slot. I think you will have to discuss whether or not it would be better to spend that time in committee deliberations or to do hearings.
MR. GREENBERG: Do either of you want to say anything about the surveillance panels?
DR. FITZMAURICE: Sure. What we had talked about was starting out with essentially a general overview of public health surveillance.
Denise Coo, who is the director of the division of public health surveillance and informatics at CDC is going to start out.
I am not exactly sure what she is going to be addressing. She and I have had a number of communications and she and I will be meeting with her in early December.
She does have a talk that she has been peddling on the emerging role of informatics and public health surveillance.
There is also going to be some general discussion of what is it and what are its functions.
Then, in addition to that, there is going to be someone from CSTE, Council of State and Territorial Epidemiologists, talking about communicable disease surveillance.
They have been doing some conceptual work on a national public health surveillance infrastructure.
Then, in addition to that, we wanted to spend a little bit of time on other than communicable disease surveillance, particularly from the state perspective.
One possibility is occupational health surveillance and another possibility is vitals, but vitals in terms of its changing functions in at least several states, changing from a more passive statistics system into an intervention system.
DR. MC DONALD: Is the die cast on the presenters?
DR. FITZMAURICE: No.
DR. MC DONALD: There are a bunch of implementations. There is a lead surveillance going on in Pennsylvania. There is activity in Georgia that has been going on two or three years.
There is a process in Maryland. There is a subcommittee of CSTE with about 14. They call them the eastern, but Denver and Texas are on it, or Florida. I don't know how they get away with calling themselves the eastern group. It must just be because it gives them more credit.
MS. GREENBERG: Is it all around lead?
DR. MC DONALD: No, no, Pennsylvania has probably been doing it the longest, and they started with just lead.
The labs all ship in the results automatically. I would have to go back to some lists and get some of the names, but there is a lot of activity.
DR. FRIEDMAN: If you could give me a call or send me a note on that, I would really appreciate it, Clem.
DR. STARFIELD: Does that lead stuff, does that mean that environmental health surveillance is also included in what we are interested in?
DR. FRIEDMAN: Sure. This session was really intended not to be comprehensive, but to be illustrative.
DR. LUMPKIN: Again, we are talking about one panel in that one day, one hour.
DR. FRIEDMAN: Yes, we are talking about an hour of presentations leaving perhaps a half hour of discussion.
DR. LUMPKIN: Then the second panel will be essentially a case study of the implementation of the HL7 standard, electronic data interchange standard for immunizations.
There will be three presentations, one from the CDC perspective, which has pulled together a work group. The second will be from a state. I cast about and picked Illinois, for implementation of that standard and also to describe about some of the agreements that had to go on amongst the states to extend the standard, for information that is beyond the HL7 standard.
Then the third would be a vendor who has been participating in the process who will be selected, who will hopefully talk about the kinds of issues that need to be settled before they are willing to start incorporating such a standard into their information systems.
MS. GREENBERG: Other items that have been identified, the subcommittee on populations has two reports it is working on. It may be that one or both will be presented.
DR. IEZZONI: And Marjorie, Kathy has sent you a paragraph and justification for a panel that we might be able to put up to deal not specifically with, but addressing the item that is in tab M of your book.
Medicare has a brand new data gathering mandate to support risk adjustment for capitating managed care plans starting January 1, 2000.
It is a big data collection mandate, in the context of other efforts to try to risk adjust capitated payment. So, we wanted to hear a little bit from the industry and others about the implications of that and how they are viewing in and the whole kind of goal of data production for risk adjustment.
MS. GREENBERG: That is the very last page.
DR. IEZZONI: It is tab M, I think.
MS. GREENBERG: Yes, tab M, but also the very last page of your NCVHS work plan. By the way, it is sort of a new and improved format that was endorsed by the executive subcommittee, but we welcome comments on how it can be made even more useful to you.
Apparently, I know Lisa and Kathy were going to do something on that. So, we are going to try to set up a panel of really health plans is what you are thinking in terms of?
DR. IEZZONI: No, I think we also need to hear from people who want the data. Kathy wrote a nice kind of motivating paragraph or two about it, and then kind of a sense of what the questions might be, which should be on your e mail if you haven't pulled it off yet. It will be there when you get home.
MS. COLTIN: I think it would be a gap for us to miss an opportunity to also hear from HCFA about what the plans are, not just around using the data for risk adjustment but around the data itself.
This becomes a resource, a data resource, of information that they will be collecting from managed care plans.
Have they thought about how they intend to use that data resource and make it available for research or for any other purposes. I think this is an opportunity to hear a little bit about that as well.
MS. GREENBERG: I will work with Stewart on that. Those, I think, were the main areas of presentations that we discussed. I might want to entertain other proposals.
I know we are now trying to balance the work groups. We have an expanded structure. We are trying to make time for the work groups and the subcommittee, to use the time of the full committee meeting to meet.
I know I was frustrated yesterday because I wanted to be at all of them and I couldn't be, and I am sure others were as well. As Don Detmer has told me, live with it.
DR. MC DONALD: You can always listen to it on the web.
MS. GREENBERG: Afterwards; that is true.
DR. LUMPKIN: Okay, any other items that people have that they want to put into the queue for upcoming meetings?
Okay, at this point then --
DR. STARFIELD: Do you want to go over those subsequent meetings so we all have them on our calendar? I am not sure we all due.
MS. GREENBERG: All right, you have the February meeting, and we don't actually have another meeting after the February 3,4, until the third week of June which is June 22, 23, 24, are the three days.
Again, probably one will be used for subcommittee meetings. I would anticipate there would be a number of subcommittee meetings between the February meeting and the June meeting, subcommittee meetings and other kinds of meetings.
I encourage you to start thinking about those, so we can start getting those scheduled, because they will happen before we know it.
DR. LUMPKIN: Just to reinforce that, with that expectation one would think that we would have more things to do as a full committee at that meeting because of that work.
Don't put off doing stuff for that June meeting, because we may have less time for work groups and subcommittees than we normally have, if we are going to get all our business done.
MS. GREENBERG: That is possible. When is our next? September 27, 28.
MR. SCANLON: And November 3 and 4.
MS. GREENBERG: I don't know why that one fell off my calendar. November 3 and 4, September 27, 28, June 22 through 24.
Oh, right, January 7, the executive subcommittee will be meeting in Washington also. January 6, the work group on NHII. We have January 22, we have the subcommittee on populations is going to be discussing post-acute care.
DR. LUMPKIN: All that information is on the web page, or it should be, I think, the future meetings section should be up there, since many people don't have their calendars here, but we do have the dates.
Okay, the business having been completed, do I hear a motion to adjourn?
MS. FYFFE: So move.
DR. LUMPKIN: Is there a second
MS. WARD: Second.
DR. LUMPKIN: All those in favor say aye.
[Voices heard in agreement.]
DR. LUMPKIN: Opposed, stay in your seat.
[Whereupon, at 12:55 p.m., the meeting was adjourned.]