Hubert H. Humphrey Building
Room 303A-339A
200
Independence Avenue, S.W.
Washington, D.C.
Committee Members:
Don E. Detmer, M.D.
Hortensia Amaro, Ph.D.
Jeffrey S. Blair, MBA
Simon
P. Cohn, M.D.
Daniel J. Friedman
Kathleen Fyffe
Kathleen A. Frawley,
J.D.
Richard K. Harding, M.D.
Kathryn L. Coltin
Robert M. Gellman,
J.D.
Lisa I. Iezzoni, M.D.
John R. Lumpkin, M.D.
Vincent Mor, Ph.D.
Clement
Joseph McDonald, M.D.
Barbara Starfield, M.D.
M. Elizabeth Ward
Liaison Representatives:
Robert Moore
Harvey Schwartz, Ph.D.
James Scanlon, HHS Executive
Staff Director
Marjorie S. Greenberg, Executive Secretary
Call to Order, Welcome and Introductions, Review of Agenda -- Dr. Don Detmer
Recognition of Dr. Gail F. Fisher
Update from the Department -- David Garrison
Panel Discussion --
Dr. Lisa Simpson,
AHCPR
Dr. Edward Sondik, NCHS
Ms. Betsy Humphreys, NLM
Dr. Steven
Jencks, HCFA
Update from the Department -- Bill Braithwaite
DR. DETMER: I am Don Detmer, chair of the National Committee, and I would like to start the way we typically do by us going around the room and introducing ourselves.
We have an exciting meeting, I think, an interesting and important meeting today and tomorrow. But I think part of what is exciting about it is we have new members as well and I think as hard as all the committee members have been working, it is important not only to see competent people come on to the committee, but it is also help. So, we are grateful at many levels.
I would like to just read a brief introduction about the three new people coming on and then -- not all of them will be here with us the next couple of days. They have to get their photos and get through all the paperwork, but I would like to just briefly introduce the people and if they are here, they can add more to it when we go around the room.
First is Dan Friedman and Dr. Friedman, since 1986, has served as the assistant commissioner for the Bureau of Health Statistics at the Massachusetts Department of Health, where he directs the Division on Health Statistics and Research. I am particularly pleased to get this additional kind of expertise on the board.
Activities he is responsible for in Massachusetts include the Registry of Vital Records and Statistics, the Massachusetts Cancer Registry, data management and software engineering, health resources statistics, Occupational Health Surveillance Program, the AIDS Statistics and Evaluation Program and the Sentinel Injury Surveillance System.
He has been a leader in that state in the development of public use data and methods for data dissemination and prior to that, he was employed by Blue Cross and Blue Shield. He is an active member of that National Association for Public Health Statistics and Information Systems. He served on the National Task Force to Redesign the U.S. Death Registration System and worked with the American College of Obstetrics and Gynecologists on improving quality of data available in both medical records and birth certificates.
He did his undergraduate work at Overland College and received a Ph.D. in political science from Chapel Hill, University of North Carolina.
The second new individual coming on board -- taking these in alphabetical order -- is Kathleen Fyffe. Kathleen is the federal legislative director at the Health Insurance Association of America. She is responsible for issues including health insurance operations, privacy of health information, electronic data interchange, computer-based patient records, provider audit guidelines and fraud and abuse.
Ms. Fyffe is a member of the National Uniform Billing Committee, the National Uniform Claims Committee and -- the Executive Committee, actually, for the Work Group on Electronic Data Interchange. She has had 18 years of experience in the health care industry. Her career experience includes nine years at Arthur Andersen as a senior manager implementing automated systems in health care organizations, director level positions within acute care hospitals and managed care organizations and as a commissioned officer in the U.S. Army Finance and Medical Service Corps.
She holds a master's in health administration degree from Duke and a bachelor of arts degree from Wake Forest University. So, we have a new ACC member.
The third individual is Paul Neuachek(?). Paul Neuachek is professor of health policy and pediatrics at the Institute for Health Policy Studies, School of Medicine, University of California at San Francisco. He is a professor in the Health and Medical Sciences Program at the School of Public Health at the University of California at Berkeley.
Dr. Neuachek is a health services researcher, who has worked for many years in the area of health care for children and has published extensively on related topics in major journals. One of his primary focuses has been on health care and access issues for children with special needs.
In addition, he has done considerable work involving federal survey data and statistical resources on children and families and is a consultant to several public health agencies. He did both his undergraduate and graduate work at UC-Berkeley and holds a master's degree in public policy and a doctorate in public health.
So, I think we have three very good people coming on board and I guess, Dan, we will welcome you officially for all three.
[Applause.]
With that, what I would like to do is just start if we could and we will just go around and introduce ourselves and then also through the audience and get onto our business.
Lisa.
DR. IEZZONI: I am Lisa Iezzoni from Beth Israel Deaconess Medical Center in Boston.
DR. MOR: I am Vince Mor from Brown University.
DR. GELLMAN: I am Bob Gellman, a privacy and information policy consultant.
DR. FRAWLEY: I am Kathleen Frawley, the American Health Information Management Association.
DR. BLAIR: Jeff Blair, Medical Records Institute.
DR. STARFIELD: Barbara Starfield, the Johns Hopkins University.
DR. FISHER: Gail Fisher, National Center for Health Statistics.
MS. GREENBERG: Marjorie Greenberg, the National Center for Health Statistics and executive secretary to the committee.
MR. SCANLON: Jim Scanlon, ASPE and executive staff director for the committee.
MR. MOORE: Bob Moore from HCFA, staff to the committee.
DR. SCHWARTZ: Harvey Schwartz, Agency for Health Care Policy and Research, liaison to the committee.
MS. COLTIN: Kathy Coltin, Harvard Pilgrim Health Care, Boston, Massachusetts.
DR. COHN: Simon Cohn, Kaiser Permanente.
MS. WARD: Elizabeth Ward, Washington State Department of Health.
DR. HARDING: Richard Harding, a child psychiatrist from South Carolina.
DR. AMARO: Hortensia Amaro, Boston University School of Public Health.
DR. FRIEDMAN: Dan Friedman, Massachusetts Department of Public Health.
MR. GARRISON: Dave Garrison, principal deputy assistant secretary for ASPE here at HHS and chair of the Data Council.
MS. SEALANDER: Karen Sealander(?) with McDermott, Law and Emory.
MS. CARTER: Gail Carter, Anthem Blue Cross and Blue Shield.
MR. DAY: Derwin Day, Blue Cross and Blue Shield of Illinois.
MS. WARDEN: Gloria Warden, Blue Cross and Blue Shield of Illinois.
MR. WATKINS: Larry Watkins, Medic Computer Systems.
MR. KRAMER: Mike Kramer, National Center for Health Statistics.
MR. MAYS: Bob Mays, Health Care Financing Administration.
MR. EPSTEIN: Mark Epstein, National Association of Health Data Organizations.
MS. GUILFOY: Helene Guilfoy, Catholic Health Initiatives.
MR. HALLIDAY: Dennis Halliday.
MS. ARAKI: Lynnette Araki, National Center for Health Statistics.
MR. DICKINSON: Jerry Dickinson, Health Data Sciences.
MS. BALL: Judy Ball, HHS.
[Further introductions off microphone.]
DR. DETMER: Okay. Great. It is nice to have everyone here.
The agenda that we have before us really includes hearing an update from a variety of perspectives and then a selected set of updates that we asked various agencies that relate to this group to talk about things that they plan for the coming year.
One of the things that we will be doing after we have our breakout sessions in this meeting is having our Executive Committee meeting and we want to get your input from the committee, as well as these agencies, so that when the Executive Committee meets and puts together the work plan for the coming year, we have the benefit not only of where the agencies are planning to go, but also what you folks would want us to particularly focus on.
So, that is going to be a lot of our attention actually at this meeting. So, we will have those briefings and updates and then also our subcommittee breakout sessions and then tomorrow before we leave, we also have a couple of, I think, really worthwhile, exciting things that will be reported to us.
One, we had talked about putting together some public education materials. Elizabeth Ward actually has accomplished at this point, working with colleagues, and we will have both a presentation, as well as a power point set of slides that we will be able to get to use, to talk about the committee and its work and so forth. So, I think that is making nice strides and then the last thing we will also be doing before we adjourn is talking about the issue of unique personal identifiers as well and where do we want to go in terms of next step strategy on that important issue.
So, that is a very brief run-through.
We also have our first annual report to the Congress on the HIPAA implementation process and that is going to be handed around to you folks. I would like for you also to take a look at that if you could, so that, in fact, tomorrow we could even get some -- if you do have additions or corrections and such, I would like to see us approve that in principle, get your additional thoughts so the Executive Committee could sign off on that when we have our meeting.
So, that is also not currently in your agenda, but will be coming around.
Are there other items that I have missed that you would have me have before we move on?
[There was no response.]
I am particularly pleased that Gail Fisher is with us and I am going to stand for this. Gail, I would like for you to do as well, if you would please.
MS. GREENBERG: Shall I stand?
DR. DETMER: Yes, why don't you as well.
We are very delighted to have Gail with us today. We have made some nice comments about her when we had a prior meeting, but we wanted to get her back and make sure we do this appropriately and formally.
Obviously, I know I speak for all of us on the current group, but I also am happy to be able to read to you a letter that came from a prior colleague of ours. This is from Carol Weigal(?) at the Mayo Clinic and what she has said -- and I would like to read this and then we have a presentation we also wish to make.
"Dear Gail, I reviewed the agenda for the November National Committee on Vital and Health Statistics and noted that the committee was going to recognize you. I didn't want to let such an occasion pass without taking the opportunity to send along my thanks and very best wishes.
"Gail, your contributions to the National Center for Health Statistics, in general, the National Committee on Vital and Health Statistics, in particular, are significant. The legacy you leave to those who follow is one filled with the commitment to forging the needed partnerships between the public and private sectors in matters of health data policies. 'Getting it right is a talent,' but the ability to do that with diplomacy is but one of your consummate skills.
"I enjoyed the opportunity to participate on the National Committee for Vital and Health Statistics from 1986 to 1991. As is so often true, those years were marked by controversial issues." -- Happily we don't have any of those today.
"I especially appreciated your gentle guidance as our subcommittee struggled with the inevitable compromises. It was and is my privilege to have learned a great deal from you. I remain grateful for those lessons, as I find use for some of those same diplomatic skills in my current endeavors.
"My very best to you as you retire from active service on the committee. Although as you turn that page, we recognize it lands on top of all the pages that chronicle the professional life and times of Gail F. Fisher, remarkable woman, whom I consider it a privilege to know and respect as both a mentor and a friend. Best personal regards, Carol Weigal."
Now, we also have for you as a token, certainly, of our appreciation a couple of things. What this says is "With appreciation to Gail F. Fisher, Ph.D., from the National Committee on Vital and Health Statistics for the wisdom and dedication you have brought to the role of the committee's executive secretary..." -- this is amazing -- "1981 to 1997. Thank you very much."
[Applause.]
We also have a nice certificate that Ed Sondik has signed as well from the Department, presented to you for grateful appreciation of services to the committee. So, thank you very much.
I don't know if you would like to make some comments, but we would be delighted if you did.
DR. FISHER: I would like very much to thank you for this presentation and also for those very nice remarks. They genuinely mean a lot to me because I have always thought the work of this committee was very, very important.
And it has been one of my better professional experiences to have worked with you and it certainly was controversial over the years.
People used to tell me when I was younger, why are you in health statistics. It is so boring. It has never been boring.
I would like to leave a comment with you of how very positive it has been for me this year to monitor the progress of the work that you are doing. My career now spans 40 years in public health statistics and to evaluate what you are doing, I go back approximately 35 years ago when I first heard Dr. Carl White proclaim that we were going to move in the direction of a comprehensive system of population-based health statistics in sufficient detail to be useful at the program and the community level.
His comments fell on very fertile ground with me because I had spent six years organizing data to present before Congress to argue for new programs in public health, which were the health effects of air pollution, what we called in those days accident prevention and chronic disease. And I worked in the areas of diabetes, arthritis and obesity.
And I can't tell you how crude the data were that we used in those days. So, I felt he was absolutely right. I had no idea how long and how controversial it would be to move in those directions.
And I want to thank all of you because I am retiring feeling that this activity is in very solid hands with this committee and with the staffs that you have brought both from the Center and from throughout the Department. I really feel very positive as I review these comments. And that is not to negate the complexities and the problems you will have and the very checkered path I am sure we will have in implementing this. But I really do think we are going to implement a system that will mean a great advance for public health programs.
[Applause.]
DR. DETMER: You are welcome to stay or leave, but I think that as you can, I think, tell, we really are in your debt and we actually expect you to keep an eye on us and weigh in as we need your help. Okay? So, thanks very much.
Okay. Moving then to rest of the agenda, I think, as we heard, David Garrison is here. He chairs the Data Council. We appreciate your being here. And you are going to give us an update, we hope.
MR. GARRISON: Yes, sir. Thanks, Don. Thanks, everybody. Welcome to HHS and good morning to the folks who are sitting behind me.
I wanted to take a chance, as is our tradition here, to update you on what has occurred since the last time we gathered. And in doing so, I want to again express appreciation to all of you for the excellent work that you and the committee have been doing here, especially as regards to new requirements in the Health Insurance Portability and Accountability Act or as we fondly know it, as HIPAA.
I also want to take the opportunity, Mr. Chairman, to welcome new members, especially my Bay State colleague here, Dr. Friedman. I appreciate your mentioning the ACC nexus here. We will have to take that into account here in the future when we consider candidates for your committee.
As Don said, I am here in my role as the co-chair of the Data Council. And for the new member, for Dr. Friedman, the council serves as the Department's focal point for data policy and privacy issues and we have three main roles. We advise the Secretary on data, policy issues. We provide a forum for the development and coordination of data policy within the Department and we support -- our objective, certainly, is to support a more integrated and coherent and cohesive information strategy across HHS.
The first item I want to mention is that the Secretary has implemented a policy to improve data on race and ethnicity within HHS. The policy was recommended by the Data Council and it requires inclusion of information on race and ethnicity in all HHS data collection systems with a couple of exceptions.
While many of the Department's data systems include information on race and ethnicity, not all do so and no clear policy existed until now. The policy reaffirms the Department's commitment to the appropriate inclusion of data on racial and ethnic minority groups in our data systems. The policy also requires that the minimum standards for race and ethnicity reporting be employed, including any subsequent revisions of that policy.
The policy went into effect on November 1 and the Secretary has instructed agency heads to implement the policy in accordance with normal agency data planning, clearance and data collection cycles.
The Data Council is also the departmental focal point for the administrative simplification requirements of HIPAA and that is certainly one of our top priorities. You are going to hear a report shortly from one of our staff, Bill Braithwaite, on our progress in addressing the administrative simplification provisions and, so, I will leave it to Bill to make that report.
In the area of privacy, my colleague, John Fanning, who is the privacy advisor to the Secretary, is unable to be here today, but I can report a bit on the status of the HHS privacy recommendations. The Secretary forwarded the Department's recommendations on medical record confidentiality to Congress on September 11 and on that same day testified before the Senate Labor and Human Resources Committee.
In doing so and in subsequent discussions, the Department has offered to work with the Congress in drafting a bill and our staff have already met with Senator Jeffords' staff to begin this process. On the 28th of October, the Senate committee held a hearing on medical records privacy. The witnesses included Senator Bennett and Senator Leahy, who are working on bills of their own, as well as representatives from the National Research Council, the AMA, the AHA, the American Association of Health Plans, the Health Care Leadership Council and the privacy community.
Senator Jeffords, the chair of the committee, indicated that he plans to develop legislation that would establish national standards to protect medical information and to further the quality of care for all Americans. So, that process is continuing to unfold.
Finally, I wanted to report a bit on the subject matter of the Department's strategic plan to Congress. As those close watchers of our federal scene know, the Government Performance and Results Act required that all federal agencies submit by September 30, a strategic plan, which went to the Congress.
We have copies of that plan here for you today. I think they must around and on the table as well. Some of you have seen some press reports about the various stages of this process. Many of the departments, including HHS, produced draft plans earlier in the year and then went through an extensive public consultation about the elements of the plan and then revised the plans. That is the process that we followed here at HHS.
So, we have completed this first stage of this process and it is now in the general body politic here and we certainly welcome comments and suggestions for subsequent rounds of review of the strategic plan that would go on in years to follow.
In the meantime, the attention now shifts to the annual performance plans, which each of the agencies are required to submit as part of the President's budget for fiscal 1999, which will be released in late January or early February. Those annual performance plans are to be consistent with the strategic plan. They are to establish quantifiable performance goals that define the level of performance to be achieved during the year and they describe the processes and resources required to meet those goals.
These plans, as I say, will be available as part of the President's budget. Beginning in the year 2000, agencies will also be required to issue annual performance reports describing how well they did in actually meeting the performance goals that were specified.
Now, this process introduces performance-based planning into our procedures in a forceful way and, obviously, data issues play a large role. In the strategic plan you will note that we discussed some of the data challenges that the Department has, which shouldn't be surprising to anybody on this committee.
We are, obviously, concerned about areas where we lack data. We are concerned about the extent to which there are limitations on our ability to use current administrative data. We are concerned about the need for geographic and subpopulation detail. We are, obviously, concerned about the importance of having timely data as part of the process of trying to determine performance and we are certainly concerned about the difficulty in attributing program causality to changes in complex outcomes.
Now, the plan that we -- the plan also describes some of the interim data sources and strategies that the agencies will employ and you will see those in our document and we conclude that the focus on performance measures and public programs is a reflection of a broader shift in thinking towards accountability, results, information and evidence-based decisions. And it indicates that new investments in data will probably be needed to address those needs and that is certainly an area of concern and constant discussion for the Data Council.
So, we have a number of tasks ahead of us, both relating to the strategic plan, as I have just mentioned, as well as the various issues associated with HIPAA. And as always, we look forward to the back and forth with this committee and to the participation that your leadership has in our Data Council meetings monthly.
So, again, I appreciate everybody's time and attention and I am grateful for having the opportunity to give you this status report, Mr. Chairman. Thank you.
DR. DETMER: I want to thank you for the work that I think you do as -- generally, but particularly I think on the data council. It has been very satisfying and I have appreciated the way in which actually the views of this group do get hearings and I think really solid hearings at that council. I think when I am not there, Kathleen Frawley, I think, has been representing as well.
I also just want to expression for that. I think that it is making nice progress and I think your leadership is appreciated.
Are there questions or comments for David at this point? We will be hearing later from Bill Braithwaite. So, we appreciate that.
Questions or comments?
[There was no response.]
All right.
DR. DETMER: We are pleased to have Dr. Janet Corrigan here, who is executive director for the President's Commission on Quality and Consumer Protection. We particularly wanted to have her come to not only hear what is moving forward on that so that, hopefully, we can be of use to you, but I think it also underscores something that we have been so busy with our Kassebaum-Kennedy HIPAA work that we maybe have lost track of a little bit in the shuffle is the NCVHS's history and historical legacy related to issues assessing quality of care and tracking it.
This is something that the committee actually has quite a bit of history and I just want to reflect on a few of these markers from the past. And, Gail, you can correct me if I miss something here, but the previous Subcommittee on Ambulatory and Hospital Care Statistics followed these issues on a regular basis. That subcommittee received reports on hospital data needs for peer review organizations and outcome research, uniform clinical data sets and evaluating and monitoring quality and managed care organizations and large group practices.
In fact, a major subcommittee meeting in September of 1993 addressed this issue. The full committees also received presentations on the uniform clinical data set and reports from HCFA and AHCPR on data issues related to quality of care. There have been a number of discussions around health care reform and data to monitor quality.
In March 1995, the full committee agenda included a panel discussion with NCQA, FACCT, JCHA and others on data needs for performance measurements, as related particularly to the Core Data Elements Project. So, clearly, there has been a history of this.
I had the pleasure of speaking before John Eisenberg at the Institute of Medicine meeting, the fall meeting, last week and John also spoke to the committee's work, Eisenberg, and I think what is coming out, at least, from a lot of the discussions that the Quality Round Table that the IOM has had is that we really do know how to measure care these days. We do know that unfortunately also there is tremendous variance in quality of care around the country.
So, I think what I would like to do as I turn the floor over to Janet to hear what they are doing is also leave you with the clear sense that this committee is interested in this and, in fact, is a resource, I like to feel, to help move, perhaps, some of the work that you are working on forward.
So, nice to have you here.
DR. CORRIGAN: Thank you very much. It is a real pleasure. I appreciate the invitation.
I also want to thank you. I know I was a little bit later on the agenda today and I appreciate your switching it around a little bit because I had a conflict later on today.
This committee is definitely a resource to the commission. In fact, as I look around, several of you have already testified before the commission or its various subcommittees on different issues that are currently being deliberated.
I thought what I would do is to kind of give you sort of a quick overview of the commission, how it is organized, what its mandate is, the time frame we have within and then provide you with a little bit of a progress report on where we are at with our first product that we expect to be bringing to a close and putting out a little bit later this month, the Consumer Bill of Rights.
Then I wanted to spend a couple of minutes talking about the second part of our mandate, which really is to develop a quality framework for the health care industry and I think it is really that part of the commission's mandate that you probably have the greatest interest in.
I did bring a few slides.
For those of you who -- I know you are probably somewhat familiar with the commission, but it was created last March by President Clinton and the advisory commission is very much a response to, I think, a couple of things; in particular, the concerns that are being voiced by consumers, but also concerns that are being voiced by health care professionals and workers.
In addition to that, I think the commission reflects what is an ongoing concern that the pace of change in the health care industry may be having some negative impacts on patient and on quality, but also that many of the changes that are underway, most of the changes underway really present a wonderful opportunity to be able to address some of the quality issues that we have before us.
This is a large advisory commission. There are 34 members in total and it is co-chaired by Secretary Shalala and Secretary Herman. The other 32 members really come from very different backgrounds. At any rate, as I was saying, the commission is a very diverse group with 34 members in total. They are drawn from the business community, both large Fortune 500 companies, as well as business coalitions, representatives of small business. The provider community
-- Tom Reardon chairs the AMA board, is a member of the commission. Beverly Malone from the ANA. We also have representatives of the home health community and long term care.
In addition to that, there are health care insurers in health plans of all stripes. There are group and staff model representatives, IPAs, indemnity insurers. There is a state insurance commissioner, an individual who used to be in the San Francisco Department of health. She is now with a private foundation. But you certainly get a flavor for this group. It is really very diverse and in many ways it is kind of a microcosm of American society.
DR. DETMER: And, of course, Sheila Leatherman, who is well-known to this group.
DR. CORRIGAN: Yes. Sheila Leatherman is a member of the commission as well.
We have only one year to accomplish our objectives. When this commission was originally announced by the President, it was thought of as an 18 month effort. It took a little while to get the commission appointed and up and running and the time frame was shortened to 12 months because it was felt that it was particularly important to begin to move forward with this agenda.
I think one thing that should be kept in mind is the commission is very definitely intended to look towards incremental reform and incremental change. That is the approach that has been taken, that there are just many, many efforts underway out there. There is a lot of creativity and a lot of innovative developments underway.
The commission wants to build on those kinds of efforts and undertake incremental change that would afford some degree of consumer protection, as well as begin to address some of the more systemic issues related to quality.
In general, the commission meets every month for two days. On the first day, there are four subcommittees that operate in parallel and then the full commission meets on the second day. We will be producing two reports. The first is the Consumer Bill of Rights and Responsibilities and we have completed a great deal of the work on the Bill of Rights and we anticipate that that will be finalized at the commission's meeting later this month, on the 18th and 19th.
Then we will move into the work on our final report, which has already had a lot of work done actually at the subcommittee level and that we will be producing at the end of March.
A couple of things that are important to note about our operating process, which really speaks to the kinds of reports that will likely come out, this large group of commissioners -- we are operating by consensus in terms of decision making. We are going to be moving forward with a document that everyone on the commission can agree with and can support.
Given the diversity of this group, that, by definition, or it implies that this will be more moderate, mainstream kinds of recommendations coming out of the commission.
The commission is also doing all of its work in public. Our full commission meetings, as well as the subcommittee meetings, are open to the public. We have a Web site, which includes full transcripts from all meetings. It also includes all of the even early draft papers from the staff. Everything that is forwarded to the commission goes onto the Web site a few days before the meeting.
So, it has been a very, very open process. We have had over 80 individuals come in and testify before the commission. We have received an extraordinary amount of written communication that is often times sent directly to commission members or distributed to them as part of the meetings.
As I said, we really have a two-pronged mandate. There is the whole area of consumer protection and then developing a quality framework. These two are interrelated. A good deal of our work on the consumer protection side has focused on the right that individuals should have to certain types of information in order to be able to make the marketplace drive towards quality improvement and for them to make good decisions about selecting health plans or providers or selecting between treatment options.
That whole area of information disclosure is one that relates directly to the issues that we are dealing with as a part of our -- the second part of our mandate, the quality framework, where we get much more extensively into issues of standardized quality measurement and reporting.
There are four subcommittees that were established right at the beginning of the process. The first subcommittee is the Subcommittee on Consumer Rights, Protections and Responsibilities. That is the subcommittee dealing with the Bill of Rights. It has received most of the attention so far and certainly most of the media focus has been on the subcommittee.
It is chaired by Peter Thomas, who is an attorney with a private law firm here in town and has extensive experience with the disabled community and the consumer groups. We also have a Subcommittee on Performance and Quality Measurement and that is the one chaired by Sheila Leatherman. They are working a great deal on issues of standardized quality measurement.
And there is a subcommittee called Creating a Quality Improvement Environment, which is chaired by Mary Wakefield and they are looking at a whole set of issues related to the incentives that health care organizations face and whether or not those incentives are consistent with quality improvement.
They are also looking at issues related to the internal operations of health care organizations and whether or not those are promoting quality improvement.
The last subcommittee is the Rules and Responsibilities of Public and Private Purchasers and of Quality Oversight Organizations. That is chaired by Gail Warden from the Henry Ford and also Sandra Hernandez, who was from the San Francisco Department of Public Health.
We thought that one was particularly appropriate to have co-chaired by someone with a public sector background, as well as a private sector background because they are grappling with issues of public/private partnership, as well as how do we encourage public purchasers, like Medicare and state governments and FEHB to emulate some of the value-based purchasing practices that have really been perfected to a great extent by the large private purchasers.
They are also looking closely at how to better coordinate and link public and private oversight responsibilities, whether it is crediting responsibilities or those that are carried out through federal qualification and certification activities of the Federal Government, as well as state licensure.
Let just turn to sort of a brief summary of where the commission is at with the Bill of Rights activity. At the commission meeting that we had about three weeks ago, the full commission gave preliminary approval to seven of eight chapters that will be in the Bill of Rights. They are going to be returning to the eighth one at our meeting in two weeks.
There is also one remaining issue that we have been asked to do additional work on and that is an ombudsperson program, whether individuals should have a right to consumer assistance and more specifically to assistance through an ombudsprogram.
At any rate, the chapters that there has been reasonable agreement, sort of at the core of the Bill of Rights is this right to information and information includes both comparative data on quality and we mean technical quality of care, comparative data on satisfaction measures and comparative data on certain aspects of service, waiting time, interpersonal skills. And those types of data are intended to apply to not only health plans and all types of health insurance products, but also to individual providers and facilities.
So, part of the effort here is to begin to establish a framework and establish a precedent or a right that individuals should have access to a good deal more comparative data on quality and satisfaction and service than they currently have and it begins to speak to the need for those types of comparative data to not only be applicable to health plans, as they currently are to a great extent with the widespread adoption of HEATUS, but also begin to move down the quality measurement and to make information more readily available at the provider and the network and the institutional levels.
That is the general thrust of the information chapter. This is a particularly important one. It is probably the component of the Bill of Rights that will likely have the greatest cost implications, but at the same time, it is very consistent with what I think is widely viewed as an important area for investment and that until we build stronger clinical information systems, we simply cannot advance the state of the art of quality measurement and if we can't measure quality, we probably can't improve it. So, this is really the linkage with the broader mandate in terms of quality framework.
Other areas that are spoken to in the Bill of Rights as it currently exists -- and I have to emphasize everything I am saying as far as sort of consensus is a preliminary approval of these chapters. Nothing is final until this goes out the door. So, it will really be a couple of weeks before anything is final.
At any rate, some of the other areas that are addressed in the Bill of Rights include the right to choice of plans and providers and the commission thus far in its preliminary findings have not established choice of plan as a right, but we are particularly concerned about the potential of requiring choice of plan to increase the cost of providing insurance to small employers.
So, they have identified choice of plan as a very desirable thing, but focus primarily on choice of providers and provider networks with adequate numbers for people to choose from. These recommendations maintain the integrity of networks; issues like any willing provider were taken off the table very early on. What this focuses on is the adequacy of a network and the ease of access to providers within network once you are in that.
There are specific recommendations that apply to the chronically or terminally ill and their need to have ease of access to specialists through either standing referral mechanisms or direct access to specialists. There are also a variety of recommendations that pertain to direct access to obstetricians, gynecologists or other qualified professionals for the receipt of routine women's services.
There is a chapter that relates to access to emergency services and the advisory commission in its preliminary findings is recommending that individuals have access to emergency services without prior authorization under a prudent lay person's standard, which is consistent with the Balanced Budget Act recently.
There are also fairly extensive recommendations related to treatment decisions and the right of individuals to receive full information on all treatment options, advanced directives and to participate in making treatment decisions.
Then there are chapters on confidentiality, respect and non-discrimination. Another area that has been particularly, I think, ground breaking is the right to an external appeals function in the event that an individual is denied services on the basis of medical necessity or experimental treatment.
So, that kind of gives you a flavor of the commission's work on the Bill of Rights.
Let me turn now for just a couple of minutes on the other subcommittees that we have in place. As I said, we have the Subcommittee on Quality Measures and this is the one that is chaired by Sheila Leatherman. This subcommittee has been looking at alternative models for what they call rationalizing quality measurement activities.
They heard extensive testimony from just about all of the organizations, I think, that are involved in quality measurement from NCQA and the Joint Commission and FACT(?) and state governments and others. And they have tried to identify the areas where we have a particularly rich system of quality measurement, as well as areas where we fall short in terms of the types of measures, as well as just the lack of activity in those areas.
They have taken a close look at some of the needs in the area of measures that relate to chronic illness, as well as measures related to mental health and substance abuse and sort of holes in the current typology of measures that are available.
They have also looked pretty closely at different units of analysis and the interrelationships between measures at the community level, measures at the health plan level, measures at the provider and the institutional levels. That has led them to now take a look at models for coordinating the activities, primarily activities in the private sector that relate to health plan measurement and provider measurement.
I don't know where they will come out. They are still fairly early on in their deliberations. We expect that they will be reporting up to the full commission probably in December or January with some recommendations about how to begin to coordinate better some of those activities.
They are also looking closely at clinical information systems and at vulnerable populations and whether or not the current quality measurement activities adequately cover the care provided to vulnerable populations. That is a theme that runs throughout the commission's work. We have tried to devote special attention to vulnerable populations and really for two reasons; one, because they are most vulnerable especially in a health care system that is changing, but also because there is a belief that if the health system is caring well for vulnerable populations, it probably does tell us something about how well it is doing for other populations that are perhaps easier to address their needs.
So, they are kind of viewed as a sort of a bellwether of other developments.
That particular subcommittee has also taken a look at severity of illness and whether we need better systems for adjusting for severity of illness and Lisa came and testified and produced a paper for them as well at our last meeting.
So, they are getting into the some of the -- many of the technical issues and some of the areas that probably need to be addressed in terms of a research agenda if we are going to advance the quality measurement area.
Our third Subcommittee on the Quality Improvement Environment, they are taking a look at what type of leadership is required both at the national level, the regional level, the local level within the public sector and the private sector, to try to advance quality as an important priority in the health care industry.
They have devoted considerable attention to sort of review of the literature and testimony on where we fall short in terms of quality. And the commission as a whole has heard testimony from Bob Brook and David Blumenthal and they are going to be hearing more at their meeting in a couple of weeks, not only about the variability in practice geographically and within communities, but also sort of a review of the many studies that have been published in recent years on specific conditions where we do appear to fall significantly short of where we should be in terms of quality.
So, that has been a theme running throughout the work and there seems to be a growing sense that we are at a point where it might be very appropriate to develop some national aims for improvement that target specific areas, whether they are error rates in hospitals or whether they are specific clinical areas that we think there really is a good deal of opportunity that would help to provide some direction and, hopefully, some coordination and synergy for all the efforts that are undertaken both in the public and private sector.
This subcommittee is also taking a look at a variety of work force issues and they have heard some testimony and will be hearing more about sort of the attitudes and perceptions of both physicians, nurses, as well as other caregivers, nurses' aides, and I think will likely be coming forward with a set of recommendations about how to develop stronger organizational processes and management techniques that will involve all types of workers, both professionals and non-professionals, in the quality improvement process of the organization; a very real concern that we have an unhappy and dissatisfied work force that really has implications for how well we can move this industry forward.
Lastly, they are going to be hearing additional testimony on research and innovation and dissemination. In fact, they have spent considerable time talking about ways that we might try to encourage more rapid dissemination of innovative techniques and practices.
Then lastly we have this Subcommittee on Roles and Responsibilities of Purchasers and Quality Oversight Organizations. They have taken a look at group purchasers, both public and private, and on the private side, they have separated the purchasers into large companies versus smaller ones, tried to examine their capabilities to engage in value-based purchasing. Do they have the appropriate expertise? Do they have access to information on quality? Do they have the leveraging, bargaining power with health plans and providers to obtain comparative quality data? What systems do they have in place to begin to disseminate that to employees and to begin to move comparative data and quality data out into communities and into the hands of individual consumers.
They are coming forward with a set of recommendations about how to encourage better purchasing practices, especially on the part of small private purchasers and also identifying some impediments to the public sector practices.
They are now moving on to consider a variety of issues related to individual consumers and how best to present comparative data and report card data to consumers and whether or not the current set of quality measures that we have are the ones that are most informative to the kinds of decisions that individual consumers need to make.
That is sort of where the commission is at. And I would be pleased to any questions you have.
DR. DETMER: Yes. And I would like to see us have a little dialogue with Janet, if we could, on this because if I hear you right -- first of all, I guess, I want to express my appreciation to the President and to Secretary Shalala for doing this. I think it is going to be very useful to the country and I am glad that you are also staffing that because they are fortunate.
DR. CORRIGAN: Thank you.
DR. DETMER: So, let's open this up.
Simon.
DR. COHN: Janet, I actually just had a question. Maybe you can help clarify this for me. I have not been that familiar with the work of the commission, but I was surprised by your beginning comment that every decision is made by consensus. I know this committee has had some very tough decisions to deal with over the last year, not all of which have come by consensus but with dissenting opinions.
Do you feel that there are going to be substantive results of the committee despite having to get everyone in agreement or is it -- I mean, is that really what happens or is it just some people are abstaining from the final --
DR. CORRIGAN: Well, this, I think, has -- it has been particularly important to our work on the Bill of Rights. As you might imagine, with the kind of issues that are addressed in the Bill of Rights, I mean, there are clearly those at the table who would like to go much further than where this draft Bill of Rights is currently at and then there are those at the table, who don't want to go quite as far.
We decided -- we have had extensive discussion of this as to whether this commission would have a greater impact by having majority and minority reports or whether it should attempt to maintain a decision-making process by consensus. The latter approach was chosen and I know both of the Secretaries, Secretary Herman and Secretary Shalala, feel very strongly that for this commission to really provide a clear policy direction to the President and to Congress and to leaders in the private sector, that it is important that we attempt to identify the things that we can agree upon.
As I said, what that means, though, is that this will be a more moderate mainstream product that comes out in terms of the Bill of Rights, but I don't think anyone could say that the Bill of Rights doesn't include some very fundamental and important consumer protections. For example, the expansive right to information and to comparative data as well as to an external appeals process, which is currently not present to a great degree -- it is in the Medicare Risk Contract Program in a few states, but it is not widespread across the U.S. So, there are some very important components of the Bill of Rights as it is currently drafted.
So, we are going to continue down this road and attempt to maintain a consensus around the document. I think it also means that no one will be entirely happy with the final product. I mean, it is just inevitable, but that really is what this process is about. That is what the President asked the commission to do, is to provide a policy direction. And it was our sense that it wouldn't be as useful for the commission to simply have a series of minority and, you know, majority reports.
We know that there are differences of opinion in American society. The purpose of this group was to bring them together and decide what they could actually agree upon and where there would be broad-based bipartisan support for moving forward in terms of establishing some basic consumer protections.
DR. DETMER: Lisa and then Barbara.
DR. IEZZONI: Janet, I enjoyed my opportunity on October 21st to present in front of the committee, chaired by Sheila Leatherman, the Subcommittee on Performance Measures, and was impressed by the thoughtful approach that they are taking.
They are very reality-based, which I was pleased to see and the reality hurdle that immediately hit them in the face was the lack of data to be able to do adequate performance measurement. And then there started to be this little scuttlebutt around the table, like, oh, we should think about standardizing data reporting among health care providers. And I was like, Sheila, remember when you were on the National Committee and we were talking about HIPAA, and it was obvious to me that none of the commissioners were aware of HIPAA, were aware that HHS and Shalala and the Congress are thinking about standardizing data elements.
I think that it is going to be very, very important that the commission make sure that they are at least aware of the activities that are ongoing around data standardization. At the same time, Risa Laviza-Morey(?), a geriatrician from the University of Pennsylvania, who serves on the commission, asked me a really good question.
Don, I think it is a question that we need to keep asking ourselves, and that is whether, as we talk about HIPAA and the data standards, whether we are keeping in mind the need to use data to evaluate quality. So, I think that that is something that we need to constantly remind ourselves of, you know, as we are continuing our work around data standardization.
DR. DETMER: Great.
Barbara.
DR. STARFIELD: Janet, I have lots of questions about the work of the committee. You haven't been very specific about the information, the discussions of information. So, I can't ask any specific questions, but I wanted to echo what Lisa said. For example, is the commission going to take into account the core data elements, to what extent they are perceived as important in ongoing data systems to monitor quality of care.
I have another question after that, but you may want to answer that one.
DR. CORRIGAN: This particular subcommittee, the one chaired by Sheila Leatherman, is at its meeting in two weeks, on the 18th and 19th -- I guess, on the 18th, a full day on the 18th -- will be receiving a background paper on clinical information systems that begins to raise those issues. So, I am not sure where they will come out.
I guess I would be surprised if they didn't speak in some way to the issue of core data elements. I wouldn't anticipate that they would get into great depth on that issue because as you can see from the time frame that we have and the breadth of issues, the commission's contribution in its final report will, hopefully, be one of providing more of a framework in addressing how these various pieces fit together, as well as organizational structures and partnership arrangements that need to be in place to advance the field.
They will not be able to delve deeply into very specific issues, but this is one that is coming up at the subcommittee level in a couple of weeks.
DR. STARFIELD: I think it is really important for our work that the commission come out strongly for the principle of you need certain data in order to look at quality of care.
But the main question I wanted to ask because you were most specific about the Consumer Bill of Rights, is it fair to say that the framework of the commission's work doesn't really deviate from what Richard Saltman(?), the noted political scientist, describes as the weakest form of input by consumers; that is, the focus on information, the focus on satisfaction and on complaints; that is, reactive stances by consumers, rather than proactive stances by consumers, which is really in his view a rather paternalistic view of consumer input into quality decisions? I mean, he has got a really very nice paper in the International Journal of Health Services, which clearly characterizes the different forms of consumer rights. In fact, he calls it the most democratic, the least democratic. He describes this as the least democratic.
DR. CORRIGAN: I guess I wouldn't characterize it that way, which isn't to say that complaints and appeals systems and things of that nature aren't very important and that satisfaction isn't important as well. But the primary emphasis is on how to provide consumers with better information about the technical quality of care and comparative data on the technical quality of care that can inform their decisions in selecting health plans and providers.
So, one would anticipate that that would begin to drive the market towards quality improvement to the extent that people are selecting providers and plans on quality as opposed to cost or the recommendation of a friend or a family member, which might be quite appropriate in some instances, but probably doesn't tell you a whole lot about the technical quality of care.
So, the emphasis has been more on how do we get an appropriate array of measures that carefully examine the process and outcomes of care and how do we open up that type of information to the marketplace at large. So, I am not sure I would characterize it quite the same way.
DR. DETMER: Bob and then Richard.
DR. GELLMAN: This is sort of in some ways a follow-up to what was just asked, this issue -- I want to ask about the borderline between what might be called the patient's right to know, the information about the health care system, about providers, about physicians, and what may also be termed a provider's interest, perhaps, in keeping some aspects of its operations confidential.
Has there been any substantive work done on the borderline between that? Because it is an issue that may interest us here.
DR. CORRIGAN: The commission has heard quite a bit of testimony on that and Don Berwick, who sits on that third Quality Improvement Environment Subcommittee has spoken to this issue pretty extensively. It is a tough one because right now the push is towards empowering consumers with information. At the same time, it has been very clear from some of the testimony that in some instances, to the extent that you open everything up, it is hard to get providers to accurately record and report certain types of instances, as well as to engage in quality improvement activities.
So, the work that has been done so far acknowledges that we have got a bit of a dilemma here and it is a balancing act and that there will need to be careful protection and some confidentiality certainly afforded within organizations. But at the same time, it speaks very boldly to the need to provide more comparative data externally, though, to inform the decisions in the marketplace, because we have moved from a system -- I mean, the direction of the health care industry is towards competitive marketplaces and we run a very, very high risk if you don't have information on quality available in the marketplace.
That has been an overarching theme that is there, but there has been fairly extensive discussion of the dilemma that that poses to health care organizations and providers in terms of quality improvement incentives. We don't have the answer yet. If you do, we could -- we would like to hear more on it. They do recognize the problem.
DR. HARDING: Barbara and Bob have kind of asked the question I was going to ask. So, I will ask just a little bit different clarification.
One of your slides, you had "rationalizing" in quotes, quality measurement activities. What is the rationalizing? I just didn't understand that point. What is the base of that?
DR. CORRIGAN: That is actually a term that Sheila came up with. It came out of the subcommittee and what they are saying is that there are numerous activities going on through both the public and the private sector. If you look at activities of NCQA and the Joint Commission, in fact, as well as the Pacific Business Group on Health and other various regional and community-based groups and the state governments and then some of the activities that HCFA has underway, what they are trying to do is to say is there a way to coordinate some of these or facilitate greater communication across these organizations and various programs, so that we get more out of it.
In some areas where we have got overlap or perhaps competition that isn't particularly fruitful or appropriate, are there ways to try to encourage these groups to have complementary activities and to share information when appropriate. And I guess one example would be if you have got the CDC promulgating measures at the community level and some of those are the same kinds of measures that might be in HEATUS or the same kinds of measures that might be in a hospital reporting system or a provider reporting system. How do you get the coordination so that people use some common definitions, common specifications for measures, so that you can then begin to fit different pieces of the data puzzle together. That is what they are --
DR. HARDING: So, the root word is "ration."
DR. CORRIGAN: No, I wouldn't say it is "ration." They may end up with far more going on as a result of identifying some of the holes, as well as redirecting activities that are currently overlapping or not particularly productive.
They have also discussed very extensively the importance of encouraging innovation and not attempting to standardize too soon.
DR. HARDING: I would suggest to them they re-think that word. I think it is going to get them in trouble for lots of reasons.
PARTICIPANT: I would agree. I think they ought to rationalize that term.
PARTICIPANT: I was intrigued by a comment on the morale of the health care work force and would be interested in how you are addressing it. Obviously, some of the things that we are trying to do with administrative simplification is seeking to reduce the administrative burden upon caregivers. But to what extent has the committee looked into that and where do you think they are going?
DR. CORRIGAN: They haven't looked very much into the -- sort of the administrative burden. What they have taken a look at and what they have heard testimony on is various models for providing care and they have tried to evaluate those models, whether they are interdisciplinary team models and whether they are directed at particular subpopulations. They have tried to look at whether these satisfaction levels are higher under certain models for providing care. That is one area that they have examined in quite a bit of detail.
They have also started to identify some of the characteristics of organizations where morale will likely be higher and where the work force, both professional and the paraprofessionals, will be more engaged and supportive of the organizations' quality improvement objectives. So, there seems to be sort of two areas that that subcommittee is moving towards.
One is examining different models of care and then the second is characteristics of an organization, whether it is the management, the operating procedures, the degree to which that management engages the workers in a partnership initiative, the degree of input that they have into decisions and control and some degree of autonomy over work and decisions that are made. Those sorts of issues are the ones that have surfaced as important to trying to improve worker morale, as well as quality of care.
PARTICIPANT: Just to follow -- maybe it might be helpful if I understand the term "worker." Are you talking about the spectrum from physicians to other caregivers and staff in hospitals and so forth? Is that the broad spectrum or --
DR. CORRIGAN: Yes. And they have paid quite a bit of -- from physicians, nurses, both RN and aides, and also quite a bit of attention to the growing numbers of individuals who are not licensed, who primarily fall into the aide category and are to a great extent in home health and long term care settings.
DR. IEZZONI: I was very sympathetic to the interest in vulnerable populations and making sure that issues pertaining to vulnerable populations are kept on the table at the forefront. Can you tell me how you define vulnerable populations and how, in fact, you are keeping that perspective at the forefront as the commission is deliberating?
DR. CORRIGAN: Well, I think, Beth McGuinn(?) has just written a paper for us, which isn't quite done, but she is going to be providing that to our Subcommittee on Quality Measures in about two weeks. It is on the quality measurement aspects as they apply to vulnerable populations. I would say that is where we have done a good deal of the work so far.
We have used a fairly broad definition of "vulnerable populations" to include both the disabled and the chronically ill, as well as poor, so predominantly Medicaid. So, it is a fairly broad definition. I would say that is where the greatest emphasis has been is this whole issue of whether we have the capability to measure quality or to know what is happening with vulnerable populations in the system as it changes.
The other area where we have touched on vulnerable populations is in this third Subcommittee on Care Delivery Models, because they have examined particular care delivery models that apply to the chronically ill population. So, they have touched on it, too.
In the Bill of Rights and a lot of the deliberations there, the issues of vulnerable populations have come up. In fact, they are being debated quite a bit now as it relates to this area of consumer assistance and the ombudsman issue because that is thought to be a way to provide a particular type of assistance to vulnerable groups. So, it is woven throughout.
DR. DETMER: Hortensia and then Jeff and Barbara.
DR. AMARO: I was wondering -- I have two questions. I was wondering if the commission is going to make any comment or express an opinion on the issue of a unique patient identifier and the impact that this might have on consumer protection.
DR. CORRIGAN: I don't know whether they will. It will come up in the context of the clinical information paper, building stronger clinical information systems. They are going to be debating that at their meeting in a couple of weeks. It is touched on in the background materials. So, it will be one issue that they talk about at the subcommittee level and will flow up to the commission early next year. I don't have a sense as to how far it will go.
The commission also, though, in the draft Bill of Rights, there is a chapter on confidentiality and appropriate confidentiality protections for personally identifiable data. They have strongly come forward with the need to make sure that person identifiable data are afforded appropriate privacy and confidentiality protections, at the same time recognizing that it is very important to have these types of data for quality measurement and improvement in quality monitoring activities within organizations.
So, it is a balancing act. I am not sure where they will come --
DR. AMARO: Well, if that comes out, it might be useful for us to look at what the thinking of the commission is for looking at those issues.
The other question is I was wondering how does the commission conceptualize the issue of access for populations that don't speak English, especially as it relates to access as reflected in the mix of providers and networks, which apparently is becoming a problem in some areas where there isn't the right mix of providers in networks to provide services to patients, who may not speak English. In certain areas that is particularly critical, like in mental health services.
DR. CORRIGAN: The Bill of Rights does speak to the importance of health plans, provider organizations and others having culturally competent networks, as well as the importance of having either translation ability for languages or providers who speak -- who are bilingual and I think as currently drafted, there is a suggested threshold of if your network is 5 percent or more of individuals who speak a particular language, you should have that capability in place to be able to serve those individuals.
It is also woven throughout a chapter on respect and non-discrimination, the issues of cultural competency and cultural sensitivity, as well as the language barriers and the importance of overcoming those. I think it is elsewhere in the chapter as well.
That has come up in many different contexts. It does not require or indicate that a network -- and it speaks to the issue of culturally competent. It doesn't require that the network be of the same cultural or ethnic composition as the memberships serve, but that the individuals in the network be culturally competent and trained to serve the individuals who are represented in the population.
DR. DETMER: Jeff and then Barbara and I think we will have to move on.
DR. BLAIR: Janet, will we be getting a copy of your slides or is there a handout? That is question No. 1. No. 2 is: What is the Internet address for us to keep track of this on an ongoing basis?
DR. CORRIGAN: We can certainly provide you with a copy of the slides and I can put the Internet address on that.
The other thing is the Bill of Rights document, we hope will be finalized in about two weeks, which is one reason I didn't distribute a copy of the draft right now, because it seems to be going under constant revision on a daily basis as we head into the finalization of it.
The other thing you might of interest is the commission did review an outline, a draft outline for our final report, which basically lays out the topics and chapters and issues that will be covered. And I can certainly share that with you as well. It is on the Web site.
DR. DETMER: For the sake of the audience as well that couldn't see the Web site, could you tell us what the Web site is?
DR. CORRIGAN: HTTP://HCQualityCommission, and that is one word. So, it is HCQALITYCOMMISSION.GOV. HCQALITYCOMMISSION.GOV. I know it is long.
DR. DETMER: Did you have another comment or question, Jeff, or was that it?
DR. BLAIR: That was it.
DR. DETMER: Barbara.
DR. STARFIELD: I was glad that Lisa asked the question about the definition of "vulnerable populations" because I guess I never would have thought that it was what you would respond to, which is only a subset of vulnerable populations.
Then it occurred to me that really what you are talking about is quality of care and health plans and it is a very patient-centered focus, rather than a population-centered focus if you think about it. I mean, you are not even dealing with quality of care for the 25, 30 percent of the population that is not in the health plan or people who move from one health plan to another, although you are considering that issue.
You know, I was wondering whether there was going to be anything -- what you are doing is very similar to what NCQA has been doing. They have even got a Consumer Bill of Rights. I don't really see too much difference from that because it is so focused on health plans.
You know, is there any thinking in there about quality of care for populations, some of which may not be in health plans?
DR. CORRIGAN: I guess I am sorry if I have given that perception because I actually don't think that is correct. On the Bill of Rights, it is correct that that deals with -- it deals with all users of the health care system and it does not -- it only deals with the uninsured to the extent that they use the health care system. That is correct with the Bill of Rights. It applies to users of the health care system. And I think that that is an important thing to recognize about this commission. This commission was not established to fix the health care system and it was not established to reform health insurance.
So, there are boundaries around this commission. We have not addressed the issue of the uninsured. It is predominantly a quality commission, which isn't to say it hasn't come up many, many times and that there isn't a great deal of concern about it, and it is likely to be an issue that is highlighted in various parts of the report.
This is not a comprehensive health reform commission. It is directed at basic consumer protections and quality issues. Having said that, though, the work of the commission certainly on the quality measures area has been very population focused. They have dealt with both the community level, as a unit of analysis, as well as health plans, as well as individual providers in hospitals.
You don't have to be in a health plan. And this isn't centered on managed care. It is all types of health insurance arrangements, whether or not they are a managed care plan or a traditional indemnity arrangement, whether it is public or private.
It also isn't clear to me that there is on the quality measure piece the activities of NCQA have had -- we have had testimony from them, but this group is not developing quality measures. They will not come out with a standardized set of quality measures for any entity. They are looking predominantly at the activities that are going on out there, the organizational relationships, where the holes are, what the research agenda should be and how one could have some overarching coordinating processes. That is what one subcommittee is looking at.
So, I guess I am a little confused. I don't see that there is -- I don't draw those parallels. I don't think that is the correct representation.
DR. DETMER: Just to wrap this up, I think, clearly, obviously, you could tell we are going to be very interested in tracking, mostly because we spin around these same issues.
I heard Len Ethridge, who also spoke to your group recently, try to describe this in his mind, which I thought was pretty useful, that the quality care and health care generally is maybe parallel to where the country was relative to financial institutions after the crash and a sense of where our costs are going up, our quality is uneven and our access is worsening and that essentially the development of the Security Exchange Commission that really came out to develop common, agreed upon definitions of even terms, so that balance sheets as industry developed, clearly had an opportunity to an outsider to look at, in fact, how the health of a business was from the use of such standards and such with an iteration from the public -- excuse me -- private sector interfacing with the public sector, so that, in fact, you got some standardized measurements and concepts, at least, out there.
In fact, one argument that part of the reason instability in the Asian stockmarket at this point is not all of those nations have necessarily developed those same set of standards and terms and such. That is not my field. I can't speak to the validity of that.
But I do think that when we talk about trying to move to value in health care, we are moving clearly from a cottage kind of industry to a health systems kinds of approach, which does deal with populations. Not all of them are covered at this point, but there is more at least of a population kind of picture than we had in the past. And increasingly, whoever the user is, whoever the buyer is, the person or, in fact, corporation or anyone else, can't right now judge value in health care because there may be cost and price data, but there really aren't defined terms on the quality side of the thing, so that you really can, at least, get a better handle on where that is.
I think that is the thrust of what is involved in this standardized quality measurement and reporting with really quality measures and an infrastructure in that level, not --
DR. CORRIGAN: Absolutely. That is correct.
DR. DETMER: In a sort of bullet way, like NCQA currently, it is a step in the right direction but it is not -- it is in the context of that that I hear them talking and I think that to me that very much speaks to this committee's potential role and I would like to think real role, looking forward. Clearly, if you look at the Tab G that was just talked about by David Garrison, quality is on the Department's agenda.
It has been on this committee's agenda. Lisa talked about it being on our agenda. At any rate, I would like to have us as a group hear back from your report when it comes and talk a little bit about whether our work plan for the coming year ought to, in fact, put a little more thrust behind this in light of some of these developments at the commission level in particular.
So, thank you very much. I appreciate that and all of our best wishes to you.
DR. CORRIGAN: You are very welcome.
DR. DETMER: Okay. What I would like to do is invite the panel that we have scheduled next to come up to the table. Lisa, I see. I am glad to have you here. Ed Sondik, I think, got -- oh, great. You are finished. I thought you were with the Secretary and I am glad you are available to us, and Betsy Humphreys and is Steve Jencks -- Dr. Jencks here? Yes. Great.
DR. SIMPSON: Good morning to the National Committee. It is a pleasure to be here. And good morning to the audience.
First of all, I have apologies from Dr. John Eisenberg, who is our administrator, and very much wanted to join you this morning for, I think, really a critical discussion, which is central to the work of our agency, which is about quality and the data and information needs to try to advance quality in this country. So, I can't think of a closer topic to our heart these days, but he is in Seattle and so he is sort of here in spirit.
What I want to do is in -- I think Harvey told me seven to ten minutes -- is that right? -- try to very briefly sort of just pull out a few aspects of the agency's work in the area of quality and its relationship to data and information needs and end on some of the issues that certainly we see from our vantage point that I know the committee has been struggling with over the last year certainly and address somewhat in its report to the Secretary.
First, I just wanted to sort of throw up a few elements that are on everybody's radar screen, but that I think are relevant to how we think about quality and information needs.
Clearly, I won't mention the sort of public awareness of these issues, but they have certainly translated into legislative discussions here in Washington and also in every state. Throughout my discussion when I talk about public or government, it is really important for folks to remember that I am really thinking both federal and state governments because they are such key players in today's health care system in relation to these data issues.
You have just heard from Janet Corrigan and, clearly, the commission has this issue sort of front and central of their subcommittee.
Another one that folks may not always sort of think about is how our conception of quality may be changing over time and certainly the work of Loosh(?) and Leap and Don Berwick and many others is reminding us that system safety, a basic concept in many other industries, is core to quality and even the discussions last week at the Institute of Medicine reinforced this.
Then finally another issue that is near and dear to my heart as a pediatrician is the largest expansion of insurance, public insurance in this country with the passage of the Balanced Budget Act and the expansions for child health insurance and the Department's commitment to work in partnership with states on how this is implemented and there are requirements for states to evaluate the effectiveness of this legislation in not only reducing uninsurance for children but also improving quality for children and states have different goals that they are setting up right now.
So, I think that also affects some of the data and infrastructure needs.
So, given some of those quick bullets, what is the work of the agency focusing on and how does that affect -- how can that help us in advancing quality of care and data to support it in this country?
First of all, I think we have to understand consumers' needs and what they think about quality and what information do they want. There is a lot of research that has been done in the last particularly five years and there is a long history of it, but I think it has really accelerated that we if we are going to rely on an information-based strategy to improve quality in this country, we had better know what people want and how they are going to use it and how most effectively to present it.
Also, we have to understand the sort of what works and, you know, what doesn't work, the sort of core business of the agency and health services research and also at what cost and how do you actually improve quality of care. So, that is really the second, too.
And the third important one is then once you have all this knowledge, how do you actually effectively get information to the decision-makers, whether they are at the public policy making level, the systems policy making level. And there as a former director of maternal and child health for the State of Hawaii, at best, I could improve health care and quality for a population of 1.2 million total.
Some of these health plans have many more covered lives and the potential to work in partnership to improve quality is really substantial. So, dissemination is really critical.
The final three points that weren't on that slide that I will also touch on is the agency's work in developing tools to take that knowledge about quality and what works and how to collect and manage and use information. Our work at the agency in actually collecting data -- and there we work very closely in partnership with Dr. Sondik's group, NCHS, as you well know -- and then, finally, our sort of what we call our infrastructure work that you are very familiar with on the committee with the work of Dr. Fitzmaurice and his staff.
I had two slides, but I walked out with only one of them unfortunately. I wanted to give you a brief kind of flash of the research that we sponsor on quality, which is both investigator initiated research -- and unfortunately that is the slide I am missing, as well as more targeted research because the two are critical to building our information base on quality.
For example, in our investigator initiated portfolio, we have some of Lisa's work on the CRS system, Dr. Barbara Starfield's work on child health status measurement and more recently these are looking at trying to develop more specific tools, quality measures that can be used particularly in different settings of care, as well as tools, computer-based tools for clinical decision-making support.
And they look at both new methodologies, the key issue of the unit of analysis. We have all been talking plan level. What about provider level and that also is an issue when you think about populations at the community level and getting even lower down units in terms of individual physicians and some of the market's desire to be able to make comparisons at that level; extending existing measures and then finally new settings. A lot of the work of Clem and others in clinical decision support systems and the infrastructure for that has been in hospital-based settings and how does this translate with the new technologies into ambulatory care.
So, that is just some brief snippets about our research portfolio. I am happy to answer anymore questions about that.
I want to move on to our data collection efforts and how they relate to improving or informing quality of care issues. First, obviously, our flagship data collection effort is the Medical Expenditure Panel Survey, but a close second for those of you from states may know is our partnership with states to do the Health Care Cost and Utilization Project.
I am not going to touch on that one now, but if there are any questions, I would be happy to.
Here some of the domains that this survey addresses is the access to care issue, which -- access to care is a key -- we believe a key facet of quality and the MEPS can certainly contribute information about that, along a number of parameters. But another aspect that folks talk about that I want to mention but didn't bring the slide is the issue of satisfaction, really beyond satisfaction; that is, patients' experience of care. We are learning a lot, that satisfaction is more than just understanding, the sort of service qualities of health care, but really getting at some of the decision-making issues.
For those of you who may or may not, because MEPS is such a complex survey, it has not only the household, the employer, the insurance component, but also nursing home -- quality of care in nursing homes, as well as another critical aspect.
As we think about our data collection efforts, the highlight of it is really that we are focusing on the care, on the health care system that is provided in this country and how that can affect quality. We work, as I mentioned earlier with NCHS, particularly now with the survey integration, so that our work in focusing on the services utilization costs and outcomes really complements the more health status-driven information that is developed through the NHIS or NHANES and other surveys.
Finally, what we consider our sort of infrastructure work and that is, I think, already from hearing the discussion and the questions with Janet Corrigan is the issue of standards and health data standards because if you are going to try to compare, you had better compare apples to apples. So, I think I don't have to perseverate on that point. Standards, I think, are critical for data.
As you know, we work closely with the key private sector groups in this area and through Dr. Fitzmaurice and Harvey Schwartz's work and others very much support the broader initiatives about the health information infrastructure. Some of the specific work that we do in terms of standards, other than facilitating and liaison is also providing the technical expertise with the various committees inside the department, as well as producing reports, again, in partnership with the various players.
Then the final infrastructure issue I want to put on the table is the issue of sort of where it all starts in terms of health care and that is the interaction between caregivers, clinicians and patients because they are patients at the time that they are actually interacting, in case you want to debate customer versus patient or consumer.
That is our need to move towards an electronic medical record or some automation of this information capture if we are going to really be able to move towards streamlined and cost efficient data collection that is really much more outcomes-based, much more linked to the services that folks are receiving because I think the current accretion of measures, as Kathy Coltin and others, who have been involved with NCQA, the costs of collecting so much data is -- there is a tradeoff at what point the cost of collecting really outweighs the investment.
With that, I want to just raise a couple of issues that we feel are on the radar screen right now. One is the very important balance of roles in data collection, balance between the private sector and the public sector. I think NCQA has moved the field tremendously forward in the area of managed care, but as a question earlier, not everybody is in managed care. It is the compared to who and compared to what, the community level, the population level and the balance between federal and state data reporting requirements and data collection requirements and who does what and how does that work.
So, I think that is a key issue. And then the final one for research in data is the privacy, confidentiality and I think researcher access to date, where I think the committee came out fairly strongly supporting that continues, I think, to be an important policy debate in this country.
So, with that, I will end and hand it over to my colleagues.
DR. DETMER: Thank you. Actually, I didn't officially introduce you as Dr. Simpson, the deputy director of the Agency for Health Care Policy and Research.
Thank you very much for that brief introduction.
Ed, do you want to struggle against our noise or would you folks -- you were very patient with that. I appreciate that. Or would you rather take our break and hope we can stop that up there.
Dr. Sondik is head of the National Center for Health Statistics.
DR. SONDIK: Well, first, I just want to say that I was sorry I wasn't here earlier when Gail Fisher's contribution to the committee was recognized. I take it you followed the agenda and it was. I just want to also recognize it and say that she -- no one could have been more dedicated and is more dedicated to this committee and the -- no one could be more dedicated to this committee and to its goals than Gail and it has been a pleasure working with her and my best to her in the future.
DR. DETMER: We actually showed the certificate that you had signed.
DR. SONDIK: Good. Then I feel I was a part of it.
DR. DETMER: But I appreciate your underlining that.
DR. SONDIK: I understand that you would like to hear from us in part to in a sense prepare for the retreat and then for what you are going to be doing in the future. I think it is very appropriate and very timely.
So, let me just run over some of the initiatives underway extremely briefly and then just kind of focus on where I feel that we have if not a void at this point, we have great need for input. As you may or may not know, we are continuing to design a new HANES and our plans for the new HANES are that it will not be episodic but it will be continuous in the future, which would help us greatly in budgeting and help us greatly in planning for it.
So, I don't know what we will call it. HANES Infinity no one liked. I liked it, but HANES-C for "continuous" or whatever, and that is coming along quite well, although I think the ideas are outstripping our budget at the moment.
HANES, particularly as we think about Healthy People 2010, which probably no one will bring up today other than me, so let me just raise it, that the planning for that is underway. And HANES, I see, is very important to that because HANES gives us the hard clinical measurements that we simply can't get from self-reported data; questions, for example, of what is the level of hypertension in this country and we really don't know that unless we look at data like the HANES data.
We are also looking at ways that we can make HANES more portable in the future and apply it on a more local or regional basis. Along those lines, we are developing the idea of SLAITS, which I think you have heard about before, the State and Local Area Integrated Telephone Survey, which is built on the foundation of the 78 region National Immunization Survey. The thought there is that we can use many of the phone calls that now are in a sense wasted in finding the households with children. We can use those to gather more information on health and health status, interactions with the health care system, perhaps health care quality, one of the things that we are talking about and also on welfare.
We are testing that now in a couple of states. We see it as an adjunct to and not replacing the BRFSS, the Behavioral Risk Factor Surveillance System.
When I spoke with you first, I think one of the concerns I expressed was concern about the fact that the health care system is changing. It is such a trite statement to say but it clearly is and there are questions about how we are collecting data on it and are we collecting the most important information on it. The Department is studying that problem very extensively and we expect results from that in about a year, maybe a little more.
I keep saying I hope we are going to see it in three months, but the staff keep telling me that it is going to be about that order of time. But I see it as a very major issue for us to look at and the Department is doing this -- look at how we are collecting information on the health care system, what information we are collecting. And do we need to re-think this, given that all of the structure of the system has changed. It is no longer a system that is based on edifices, if you will. It is really one where networking is so much more important than it ever was, networks based on information, networks based on the financial structure and so forth.
So, those are three of the major initiatives I see. Lisa mentioned quality and we are collaborating on quality issues in a couple of the areas where we see that NCHS can play a particular role is in things like, for example, avoidable hospitalizations, in which we are collecting data from our current set of health care surveys. That type of thing clearly is useful in assessing quality. I mentioned SLAITS and we are considering how that can also be helpful in quality.
So, certainly, any input that you can give, I think, all of us in dealing with issues related to health care quality would be quite useful. We at NCHS also need some other guidance, I think, is the way I would put it.
Was it last week or the week before last, a few of us from around the country met to consider what ways we can get this guidance and how we can work with this committee. This committee has volunteered to serve as an advisory body to NCHS and I am very grateful for that.
I feel at the moment that I would like something to kind of kick that off, kick off that guidance if you will, something that would give us some idea in relatively short terms in terms of the major directions that we should be looking in health statistics.
I am concerned, for example, about the directions that health care -- that the data collection might take, including, for example, the use of administrative data. Quality we have mentioned. The dissemination of data is particularly important, as is issues related to privacy. I feel we should make all the data we have as available as possible. How can we do that in this age of the evolving Internet?
By the way, I must give me, as I said to you earlier, my congratulations to NLM for making its information about as available as any that I have ever seen in as easy a manner as possible. You don't read anything. You just type in a word. I was very impressed and I would love to see us be able to deal with health information in general in such a manner in which we use intelligent search engines and aid the user to the greatest extent possible.
In any case, we had a meeting about a couple of weeks ago in which we considered how we could get -- we could sort of jump start this process of giving the center some guidance for the next decade to decade and a half and the thought was that perhaps this committee in collaboration with the Academy and, in particular, the National Committee on Statistics could -- or I should say the Committee on National Statistics -- I always do that. I have built-in aphasia, I guess -- could hold a couple of workshops.
The first -- and these are just for you to consider -- the first focused on the major directions or the major changes that may be taking place in health statistics that would look in particular on what the major health issues are, look at changes in data collection, changes in the collection of administrative data and how that could influence the role of the center and other topics, one of which I will get to in a second.
That could be one meeting and we were thinking about the sponsorship of this meeting, since it would deal not only with NCHS, but also with AHCPR, which knows nothing about this until this point -- these are musings, if you will -- and some of the other statistical or health statistics agencies, HCFA, for example.
This meeting, I would think would be quite useful to them. Then a second meeting that would focus specifically on NCHS and the implications of these directions for NCHS, its resources, how it is organized and what it ought to look like as a health statistics agency in the next century.
All of this is particularly important for us because as Gail exemplifies -- I am sorry to say -- we have had a number of retirements and we have a number of openings in the center for which we are about to begin active recruitment. And I would very much like as new people join the center that we have a set of directions that have -- a crystal ball, if you will, that has been formed by or given input by a group like this and your colleagues from around the country.
So, if you would, I would like you to think about the possibility of meetings, such as I have outlined and, in general, how NCHS can get the guidance that I think we need. We have a tendency, I think, as does any agency, I suppose, to think about what it does as opposed to what the issues or problems are that we are trying to solve. Just in our little meeting, I thought it was kind of interesting that as we discussed the various surveys that we do, but then someone said, well, you know, I look at health problems as relating to quality of care and access to care and cost.
It is interesting then when you look at, in a sense, what we do and then cross it, if you will, against these other dimensions. All of the things we do relate to all of those dimensions. And I found it quite useful and it is interesting that the meeting discussion somewhat changed, I think, after those points came up because it tended to focus the discussion on what we need as opposed to what we do.
So, that is kind of why I am interested in this sort of input.
Let me raise a couple of other issues that I see as on the horizon. On our Web site is a set of slides that were used at the recent Healthy People review of the Asian American and Pacific Islander populations. The cry from that Healthy People review -- and as you may know, we review various aspects of Healthy People on a regular basis and whenever we deal with any particular -- any minority community, in fact, any community, the issue always comes up that we need -- the community says we need data that is very specific to us. I see this as a real challenge for us and for the health statistics community in the future and guidance as to how, not just at the federal level, but at the state and the local level, we can develop these resources and nurture them, staff them.
And I say "we," meaning not the NCHS in particular, but the community broadly -- how we can meet these needs, I think, is very important and I see it as an issue for the committee. The guidance from this committee in that direction would be very useful.
Local data is really essential to local programs, to a buy-in to local programs. I have been to several meetings recently in which -- including the Asian Pacific Islander, including a meeting of Hispanic communities in Los Angeles, for example, in which this was essentially the No. 1 topic. So, your guidance in that would be useful.
I see issues related to genetic information and privacy as getting closer and closer. There will come a point in time when this will be part of an individual's health record. I don't think there is any question about it, how we relate that to the information that we collect. Do we collect it? What is its role in HANES and other surveys. The dissemination of that is -- a set of cells of DNA information, for example, is that of the same ilk as a
-- without identifiers, let's say, is that of the same ilk as a CD with data on it? I am not sure that it is.
And guidance on how we deal with these issues would be very useful. So, there is much that we could use the committee's input on.
DR. DETMER: That is great, though. This is a good list to chew on. I appreciate it very much.
Betsy Humphreys is at the National Library of Medicine, assistant director.
MS. HUMPHREYS: It is a pleasure to be here today. I guess I could say it is a pleasure to be here to talk to this committee always, but this time I get to talk about something even in addition to K2, which makes it kind of fun, too, not that it won't come up, you understand.
I think you all know -- thanks for the praise for the Library. If you have not -- any of you who really want to know about the National Library of Medicine and the full range of its programs, which it would be impossible, as it is with all of these agencies, to mention in seven minutes, I invite you to visit NLM's Web site, which is WWW.NLM.NIH.GOV.
If you want user friendly access, free access to MedLine in two flavors, it is available for you there and also for this group, you may be particularly interested to know that we also provide free Web-based access to our Health Star database, which contains a lot of reports and stuff of interest to this group that are not in MedLine and other things. So, help yourselves.
NLM's general interest in data and information is to promote better information service and systems to support better health care decisions and better research across the spectrum of researchers from basic biomedical to clinical to health services research. We have a particular interest in patient record system that can, one, generate clinical research, health services research and public health data as a byproduct of health care delivery and patient record systems that can also support sophisticated integration of knowledge-based information right into the process of care, which is -- obviously, we are in the business of generating and promoting access to knowledge-based information and we believe that the best way to insert that into the process of care in the future will be as an integrated part of patient record systems and, obviously, there are people in the room, who have done research on that very issue.
We do support research development and evaluation of systems in all of these areas, as well as providing direct information services and we have had a recent strong focus on the evaluation of telemedicine systems of many kinds and those projects are ongoing. You may have heard of those.
We also do a lot of work on the underlying infrastructure issues that relate to information access, access to information technology, as well; privacy, security and standards. And I am going to mention a few of those that I think you should have on your radar screen.
We will start with the one that to this group may seem most coming from left field, but it doesn't necessarily -- you probably all have been following or have heard to some extent about the various world intellectual property organization treaties and potential legislation in the United States coming out of these. And a lot of this has to do with what you would say intellectual property, that is, knowledge-based movies -- not necessarily knowledge-based, but products of books, movies, whatever. There is a whole spectrum of this.
But this group should be aware that one of the issues that comes up around this is data, databases of data and that there are actually proposals and groups within the country that are interested in extending to electronic data greater copyright and intellectual property protections than they have ever had under U.S. copyright law in the form of paper or other forms.
So, there has been quite an outcry or there was prior to last December's meeting, which was really led by the scientific information community. The Department had a strong role in that through NIH and actually through Don Lindberg because of our interest in biotechnology data. But this is also an issue for health data. So, as these proposals move through, it seems to me this committee may also have to be providing advice to the Secretary, as I am sure the various agencies, NIH being responsible or perhaps focusing a great deal on genetic sequence data, we really don't want to get to a point where sequences are being protected or people are copyrighting whole databases and then restricting access to them and this could easily become an issue for statistical data as well.
So, if it does, I think it should be on your screen. I don't want to invent trouble. We are not arguing a particular law in Congress at this moment, but this issue will not go away and if it comes up again, I think this committee should be dealing with it.
The National Library of Medicine is very interested in the notion of high performance computing and communications and making sure that as we move to the next generation Internet, the needs of health care and public health and access to health information are well-considered. The Library is funding another study by the National Research Council, specifically the Computer Science and Telecommunications Board, which did such a brilliant job on the privacy study that you are well aware of and that has informed some of your recommendations.
This next study is going to basically focus on what would be required to make the next generation Internet safe or useful for routine health care and this involves security and privacy, but it also involves things like guaranteed levels of service. I mean, clearly, if you are going to use this in a routine way, then you have to know that certain information is going to travel at certain rates and arrive at certain places and you are going to have to be able to verify that that, in fact, took place.
So, the best way to handle security and privacy in a next generation Internet is really an open question. There are people who would argue that certain facilities have to be built into the basic network. There are people who say "no," "no," "no," "no," this is middle ware. There are other people who say "no," it is built into the applications. The issue of where it happens and whether it is -- various aspects of it is spread across those three levels, I think, is an open question.
But we will be funding this study and it will take a look at current applications, health care applications, where communications are heavily involved, but for various reasons, people have had to, in essence, build their own networks because they could not rely on public networks and they will be looking at what were the factors that required that and taking that as a jumping off spot for what would be required for this.
We, obviously, have to look at the issue of scale-up here, too, because if you imagine a world in which a certain type of transaction was entirely conducted electronically, even though today may be only 10 percent of those are, then you can get to a volume issue that can overwhelm most projections of capacity.
Another privacy and confidentiality issue that relates directly to research and to the types of issues that are near and dear to Ed's heart and to AHCPR and many other agencies, HCFA, is something that came up in the context of NIH's discussion of the Secretary's draft privacy recommendations to Congress, where they focused on the issue of wanting to be sure that legislation was framed in such a way as not to have a great chilling effect on the release of public use data sets, which, of course, has been a -- something which the Department and its various agencies has been actually trying to promulgate and promote, certainly NIH among these, particularly in a couple of institutes that have a great focus on this, including the Institute on Aging.
What we were -- what the NIH community was discussing was the need, first off, to say that if people distributed unidentifiable data with the purpose of it being unidentifiable data and had followed reasonable care in doing that, then if someone took the data and did whatever they could to stand out on their heads three or four years later with new techniques and what have and started identifying people and doing bad things as a result of it, that, in fact, the onus would be on the people who were doing this with the data, not on the people who had actually released the data following reasonable practices.
So, then somebody asked the question, well, what are reasonable practices and we decided that this was potentially a very good topic for an IOM study with the Committee on National Statistics, if that is the name of it, taking the lead. My colleagues in a couple of other institutes at NIH are examining this and this is in an early stage of formation of whether this should go ahead as a study and my view is that it probably will and NLM will be one of what I imagine may be a number of funders of this potentially in other federal agencies because we think it would be very helpful to the community and to our own agencies that distribute data to have something that defines what it is and what are the research areas on this issue, which is incredibly complex, as many in this room know better than I.
Then we get to other infrastructure issues, which relate to data standards and primarily to vocabulary. I have briefed this group before on -- although not, perhaps, some of the same members -- on NLM's Unified Medical Language System effort in the UMLS meta-thesaurus, which I believe relates to Kennedy-Kassebaum implementation in a number of ways.
First off, as a vehicle for distributing pretty much all of the standard code sets that will be named as initial standards in a uniform way, showing the integration among them where it exists and also as a vehicle for distribution of the more specific clinical vocabularies that are needed for the full patient record, a vehicle for distributing a -- we hope an effective and definitive mapping between the two levels; that is, the specific level and the more general level and also a vehicle for distribution of information about which vocabularies are valid for which types of clinical messages.
On this latter one, the National Library of Medicine is already in discussions and collaboration with the Health Level 7, HL7, standards group to do some experimentation in this area, where -- and it is HL7's view that this approach will be done -- will develop an approach, which will cut across and be useful for the other standards developments organizations, too, and the others that are engaged in the same set of conversations.
So, I think that those are some of the issues that we are interested in that I think cross with this group and, clearly, as both the committee and the Department look at what set of recommendations should go forward in the year 2000 related to full computer-based patient records. Since NLM has been a promoter, funder of research and development in this area and of evaluation of the impact of this, along with AHCPR, there may very well be advice that you can give us on what our role in all of this should be, as we move forward.
Thank you.
DR. DETMER: Great. Thanks.
We were scheduled to have a break, but if you will bear with me, I would like to go ahead and let Dr. Jencks get his information on the table and then we will take a break and then we will come back and discuss it.
DR. JENCKS: First of all, I want to emphasize that HCFA is emerging and reconstituting itself, following a fairly wrenching reorganization, focused on becoming a value-based purchaser, rather than efficient payer of bills. Here for the moment let's just say that value is desired results divided by cost and then that for us -- and I am going to be talking about quality of care and quality data -- quality care is care that delivers desired results, both health and satisfaction, to large populations into subpopulations within the limits of medical science.
We let the value part take care of people who are worried about whether it is efficient or not. Now, the premise in this whole process is that HCFA is actually accountable for value and, hence, for results of the care it pays for through Medicare and Medicaid, that we will integrate our approach for Medicare and Medicaid and those of you who know the agency know that this has been historically largely a fiction. These have been separated by something that makes the Great Wall of China look like paper.
But we are really doing this in a variety of fairly interesting ways, that managed care and fee for service are evaluated on a level but not identical playing field. There are some things you just can't do in fee for service evaluation that you can do in managed care evaluation in terms of accountability of providers and so on, and that HCFA sees itself as having many, many interests in common with other commercial purchasers.
To give you a few examples of how this has been going, we have been very active participants in the HEATUS process, the Foundation for Accountability and other places where we are one among many participants. We aren't the convener. And we have gotten things out of that that I don't think we would ever have gotten if we had done our usual 800 pound gorilla act, at least if we had done it as unsubtly as we usually do it.
In the case of aligning Medicare and Medicaid, we will be publishing for public comment, for example, a set of desiderata -- they are not quite standards at this point -- for managed care plans, where the goal is to have them be the same for Medicaid plans and for Medicare plans. Everybody that I have talked to is immensely enthusiastic about the idea. The question is whether we can do it in a sufficiently consensual fashion so we don't get a lot push back because it is the 800 pound gorilla problem.
A lot of these things are going on. We are looking at a first effort just beginning to develop to pursue across Medicare and Medicaid directed at the common improvement effort, directed at the health of our common population. We haven't quite the data to be sure we know where we are doing that, but it is moving forward, too.
Another premise, the premise is not yet provable, unfortunately, is that our demands should be in terms of data to assess quality and in terms of quality-related data should be the ones that we expect that a committed provider or plan would collect for its internal use and alignment between internal needs and external needs.
It sort of follows. Once we begin to see ourselves as accountable upward and the provider and plans as accountable to us and they, in turn, accountable for what goes on within their walls, the consistency becomes pretty important. And I think that the committee has a vital role in bringing together these different interests. I will come back to that.
We see ourselves as responsible for a spectrum of quality-related activities, ranging from on one hand the investigation of special events, sentinel events, wrong leg amputations and all those things through a whole set of responsibilities for things where we have clearly defined a priority but we don't yet know how to measure it very well. Quality of care is very broad but go to a nursing home and you say, well, I think I can measure how many pressure sores there are and how many people are restrained, but I don't have the measures yet to do the quality of life issues. I need to have my feet on the ground in a place looking at what is going on, to a series of very measure-specific improvement activities, where the focus is not protecting the population against the bottom end of the curve, but improving, whether it is the immunization rate for flu or the number of people who are getting beta blockers after they have had a heart attack or any of a dozen other rather specific kinds of things, to at the other end of the spectrum, a responsibility for looking at and looking at ways to improve global measures.
One example of this is the CAPS survey, which we are using in Medicare and a lot of states are looking at implementation in Medicaid to the health of seniors measure, which may be familiar to some of you. It is a repeat measure using the SF-36 and a bunch of adjusters as well and asking what happens in change in the population. What is the overall change in health-related quality of life over a two year period.
I emphasize that spectrum because I find that in the current levels of sensitivity, as soon as we say we are interested in improving X, people assume that means we have abandoned A, B, C and Z. We believe that right now quality measures are very limited, but they are quite sufficient to achieve major improvements in quality of care and that has a complementary statement, which is that we are not really terribly interested in measurement for the sake of measurement.
We believe that if we measure something, we had better measure it because we want to improve it and we had better improve it if we measure it. That brings us to two things. One is the notion that we are really having to set priorities and the priority setting process is a novel one for us. We are in the middle of it. And I am not going to go into the details because it is long and complicated, but the basic issues are what are the potential impacts on our population for what cost invested.
The impacts are primarily looked at, for instance, health benefits and satisfaction benefits by program benefits in terms of if you give people flu vaccine, it actually costs the program less, will not be dismissed.
And I want to talk just a moment about -- I want to tell you a little something about our -- the notion here is -- what I want to suggest here is a strategy, which is common to a whole set of issues. That is, this is a strategy, which is equally appropriate when we can measure very specifically something like an immunization rate or when we are talking about things that are largely qualitative measures, subjective measures, such as quality of life in a nursing home.
The first thing we did in the reorganization was actually to put together an overall management process. I won't go into the details here. The whole process is based on an assessment of population needs and setting priorities out of those population needs. We are talking more than we ever have before to people who are in the business of having the data and I think that the critical role of the data is very clear. On the other hand, I am not sure this leads directly to things we would like from this committee.
The notion, as I said, that we are on the playing field with state Medicaid agencies, with private purchasers, with consumer advocacy groups, with everybody who really can help us to set an agenda and then to execute it in a joint way. The performance measurement issue, I take it, is a critical issue for this committee and we will come back in a moment to just one or two ideas; the collection of data and the analysis of data oriented towards improvement of activities.
What I want to emphasize here, though, is the bottom line. Now, this isn't truly the bottom line, but it is in this functional diagram, which is that there are five different major strategies that we can employ to influence, to change, to improve the health care and ultimately the health status of our beneficiaries. You are very familiar with the concept of enforcing standards, whether those are nursing home standards or conditions of participation for hospitals or dialysis facilities.
You may think less about the enforcement of contract conditions. That is how we deal with health plans. In providing technical assistance is what the peer review organizations and the end stage renal disease networks now primarily do. Their contracts are improvement oriented, performance oriented contracts to provide technical assistance, which results in improved health and improved care. We have a whole center now, the Center for beneficiary studies, which is oriented towards giving beneficiaries not only information, but also the technical assistance they need in order to be able to interpret it and make decisions. That is a long distance to come in actually doing this.
Payment and coverage policy have not traditionally, shall we say, been made entirely with a focus on improving the health of the beneficiaries. One of the things that happened during the reorganization, which is at least symbolic, but I think is a lot more than that, is that coverage policy is now part of the office of clinical standards and quality, not a part of the payment program.
Finally, there is a whole set of rewards that we can use, of which money, frankly, is only one. A whole bunch of people might well prefer to be designated as a HCFA center of excellence or Medicare and Medicaid center of excellence than to get 1 percent more funding, at least is something we have found.
Now, that is probably enough of that. Let me go and say a few words about goings on between us and the committee and here I am just going to hit a couple of points and I am not sure I am going to hit all the right ones. I think that people at HCFA are immensely impressed by the effects of the committee's leadership in bringing thinking together on administrative data.
And, gee, if that kind of leadership works, there are a whole bunch of other places it might be applied. We are currently very concerned about the development of an integrated data strategy or what we are calling post-acute care. We have let a contract to support bringing people together to think about this. This committee is clearly a vital partner in our view in getting this done and we need to talk about how that partnership works.
There are broader issues as well. When I heard the issue of genetic information raised, a bell kind of went off. Boy, is that one that we see as potentially coming right on our plates steaming hot.
But in a larger sense, the question of what is the potential of taking the notion of core data sets and extending them out to the broader range of care, we have at least a vision of how to do something for nursing homes. We have a couple of visions of how to do it in home health. We have got some visions emerging for some other specific community-based activities. We are doing some stuff for dialysis facilities, for example.
But since our whole emphasis in quality is to begin to be beneficiary centered, rather than provider centered, you know, the question is how do we work together to move from a series of provider centered databases to a beneficiary centered database. That is just, of course, a question.
I will stop there.
DR. DETMER: Okay. Well, thank you.
I think this is really a good introduction. Why don't we take a 15 minute break and then if you will -- we will have some discourse around this dialogue.
Thank you.
[Brief recess.]
DR. DETMER: What I would ask of us, let's go ahead and open this up now. Lisa has to move along fairly soon. If you do have specific questions for AHCPR or comments, we might lead to her first. But I appreciate the -- I think this was an excellent help to us as we now look at actually our work plan for the coming year.
But let's open this up. Barbara and then Vince.
DR. STARFIELD: You know, you are looking for help from us and we are looking for help from you. That is why I was particularly pleased, especially that Steve talked about the areas of overlap between what HCFA is doing and what this committee is doing.
You know, we are, as you know, moving from an era where we have got data into an era where we need integrated information and this is, you know, challenging to all of us. Even still in the work on the committee, we have still been focused mostly on data for payment and claims and at least up to now that information has not been very useful in feeding in information either about health or about health needs.
I think we really need to work together, all of you and this committee, in thinking about how we convert all this into information that can be used for intelligence and now starting with what information we need.
Are you in your own agencies thinking about things like core data, starting with what this committee has done, but maybe even extending beyond that?
DR. SIMPSON: I think you raised the key issue of data versus information, which is one that we struggled with at the agency quite a bit and, obviously, particularly in the area of clinical information systems and clinical data and the ability to understand the outcomes of care provided and what kind of infrastructure is needed.
I would echo I think it was Steve who used the term, which I like, about -- or maybe it was -- actually, it was Betsy -- of a byproduct of the process of care and how do we actually work to develop that. Obviously, automated medical records is one tool, but I think there needs to be a lot more thinking done about how one does that. And the committee's work and deliberations with the variety of perspectives you have here, I think, could be very helpful to us to think about in what ways both our data collection efforts, our research efforts, our tool development efforts and our dissemination efforts can all focus on this issue of sort of not just building capacity, but maybe leap frogging our ability to sort of bring our costs down and really create systems, clinical information systems, that are useful and generate things easily.
It is a really good time to do that because of the capacity that is being built in the private sector within health plans, managed care organizations and other settings. A lot of investment is going into it and I think the public/private dialogue about how to do that and what those core data elements might be is a huge issue and I think the committee could be very helpful in helping us think through how we could support that movement and what parts of our portfolio and activities would be most useful.
DR. DETMER: Do others of you want to respond to Barbara's --
MS. HUMPHREYS: I think what we need to do in dealing with the issue of insuring down the road that clinical information systems can, in fact, generate the core data elements that are believed necessary for the assessment of quality and the other issues that we are interested in. I think we have to develop the strategy for this and do it very carefully because I hear generally speaking when somebody says, here, these are the core data elements and I want these to be collected, the immediate reaction among some groups is wait a minute, you want me to sit down and collect those data elements just the way you have them there. Well, that will be no help to me and they are not useful to me and I am trying to practice and I am trying to do this, that and the other thing, as opposed to somebody thinking about how are we going to generate this out of what the clinician wants to do.
When you sort of say here are the core data elements. Now, let's implement this in a clinical information system. Unless you are doing it in a much more sophisticated way of how were we going to give them a system that supports the process of care and also generates out these data elements, then you can actually cause contention between the people who want the core data elements and the people who want good clinical information systems.
It seems to me that if there ever were two groups that we don't want at odds, it is those two groups. So, I think we need to handle this in a good way because it is not like, well, I have looked at this core data set and let me tell you that this doesn't help me at all when I am needing it. And I heard the other end of this thing and I am in favor of both.
So, I think that one of the issues here is I am not so sure that, in essence, phrasing this from the point of view of let's be sure that we get our, quote, core data elements is the way to deal with some of the folks that are working on the clinical information side, even though that is the end goal and I am happy to have us all think about, in essence, how we described this issue and this problem so that everybody is working toward the solution that we all can agree on.
DR. DETMER: Well stated.
I have Vince, Elizabeth, John and Lisa.
DR. MOR: I have this morning and have for some time sort of heard an emerging paradigm, which is quite different from the way we have thought about information in the past. Most researchers think about information as structured ala the NCHS or research quality, quote, unquote, approach to data and the emerging paradigm is one where the information is valuable to the person using it, first and foremost, but if it is valuable and done in a reasonably structured manner and there is coherence about that proper vocabulary.
It can then be useful for local management and then for aggregation at any number of different levels. That is a paradigm that actually is in place in the nursing home world now and there are many, many examples of that and, hopefully, it will be extended under the post-acute strategy as well.
But it is more complicated to do the more heterogeneous the health care industry becomes. It does raise for me a very similar issue that Dr. Sondik and I have talked about before, is even if you are using information that has direct clinical application to the individual and then aggregating it up, at some point any construction of measures or information out of that gets you very close to the level of the actual individual, thereby compromising privacy and confidentiality.
The same phenomenon also occurs when you try to take national data or local area data that is individually collected but normally never linked to census data or county level data or zip code level data because then you begin to get down to cells under 50 or under 25 or even the only person with that particular condition.
So, actually whether we are starting with clinical data and building up or starting with research data and then linking, you end up with this complicated issue of protecting individuals while still having information that is sufficiently flexible to create meaningful information at all levels of potential users. And I think, given this emerging paradigm, that is where the common interest around our relationship with these four agencies is and it seems to me that we have to struggle with that issue and who is allowed to make those linkages and in what levels and under what auspices, so that the information can then be public, the data properly sanitized can then be public, so that it is not owned and copyrighted.
I think that for each one of these agencies there is a really key issue because each of you approach this paradigm and I don't think there has been actually enough attention devoted to this paradigm perspective and what it means in the extraction of information.
Comments.
DR. SONDIK: Well, in some way, especially if the data sharing bill passes, it will be relatively easy for the agencies to share data with themselves and be able to kind of deal with this problem because it will remain confidential. The problem, I think, is as we sort of go down the chain, if you will, getting more and more specific, and it may be useful to look at some current approaches in different states as to how this is done.
I have visited South Carolina, for example, and they have an office that deals with data that cuts across the entire state and has it on a very specific basis to the point where they can actually pinpoint houses on a block and are able to integrate databases that give information about that house.
They have found ways of maintaining privacy but maximizing the usefulness of the data. It might be useful to see how they do it in other states.
MS. HUMPHREYS: I would just like to add that your point, the part of your point about the need to think about the researchers' responsibilities in protecting this and approaching data in a way that really can provide confidence to those people who care, that it will be protected, is one that I think the research community really needs to step up to the plate on and I think Lisa's piece in Medical Care really started that conversation, I think. We have had conversations with AHSR and others that the agency is, you know, very -- feels very strongly about this, but I personally feel it is the research community that has to have this dialogue and step up in a professional manner.
I think the National Committee can help spur that as well.
MS. WARD: A more concrete question that relates to the AHCPR NLM laboratory research that you put up there very briefly. The Centers for Disease Control has been doing work for several years now with state health departments related to public health data being -- testing how to transport that. Is what you are doing going to be connected to that or is that connected?
MS. HUMPHREYS: I can speak first for the National Library of Medicine.
One of the things I didn't mention among the numerous others was that the National Library of Medicine has a new initiative with CDC and our national network of libraries of medicine and ASTO(?) and NACHO(?) and some other players as we -- we are going to gather more as we -- we are going to gather more as we go along -- called Partners in Information Access for Public Health Professionals.
We are looking at issues of better access to technology and information for public health professionals and one of the areas we are -- and NLM has also taken on an initiative in working with CDC and others just within our regular groups to promote public health informatics and to promote some cross fertilization and understanding between our communities. You know, we have sponsored meetings on this that you have attended or others have attended, I think -- no, you were there, the first one anyway.
In fact, Clem just walked into the room. He is one of our funded sites, as was mentioned by Lisa. And NLM specifically funded a special aspect of his Indianapolis-wide network project to work on the issues of how he would link into that network, a county and the state public health department. And in sort of reviewing his proposal and working with his proposal and what he was doing, I was in close contact and he was to a certain extent as well with CDC and the people who are funding the info project in his state. So, we are trying to get these things together.
I wouldn't say that we have achieved a full understanding among each group about all the other efforts that are going on. I am happy to say that the American Medical Informatics Association that NLM has been fairly active in and we have sort of promoted increased focus on public health issues at that meeting over the last few years, recently formed a public health informatics special interest group at the last meeting and I think is talking about various ways to make sure that these things get together. So, I would say there is a long way to go, but progress is being made.
DR. SIMPSON: I would just add that the agency is also working with not only NCHS but other parts of CDC on these issues of quality and what measures are being collected currently through which vehicles, not just the NCHS-sponsored surveys, that can contribute to our understanding and I would finally add that there are also some conversations with Earl Fox at HRSA and CDC to not forget, for example, the maternal and child health block grants where many MCH programs are also collecting a lot of different data and, so, work at this -- there is, I think, lots of opportunities to be more creative about data linkages and, again, Dr. Sondik's point about state models and innovation in Minnesota, I know some health plans have worked with the state looking at birth -- you know, birth/death certificates and health plan data to try to look at some of the indicators for prenatal care and those kinds of things.
So, I think there is a lot of innovation and thought that needs to continue in that area.
MS. HUMPHREYS: I just can't resist adding one thing. NLM has a database of full text guidelines. The core or part of the core of this database are documents, now also the evidence reports, but the guidelines and the technology assessments from AHCPR, but also a large number of documents from NIH and so forth and we are looking at expanding this so that the same search interface would work on documents that were actually not resident on servers at NLM but at various sites.
This would be moving ahead to work that AHCPR is doing with the AMA and others in terms of guidelines around the country. But the first demonstration of this capability just went up and it is that you can now search through our HSTAT(?) mechanism. You can also search CDC's prevention guidelines. So, you can actually do a single search to determine whether AHCPR, NIH or CDC or the other groups have said anything and then retrieve the full text of their stuff.
DR. LUMPKIN: Thank you for your thought-provoking presentations and certainly the challenge that is before us. I would like to also offer a challenge that I think as we deliberate on providing assistance to your agencies, but also as you look at it, to come to some fundamental understanding of why we are doing all this.
That becomes, I think, a real big challenge. Eleven years ago, I was doing some work with HRSA in Egypt and I visited a small hospital in Luxor, right across the river from the Valley of the Kings, and I was going through the emergency department and they were telling me about the 25,000 patients they saw in an area that was about as big as these tables.
So, I asked them, I said, well -- because I doubted this and I said, well, can I see the charts and their response was, well, if we had charts, we couldn't see that many patients. In a way, that was a real reality for them but it is no different a reality for us. Every time we talk about measurement of quality, some provider out there seeing a patient gets an additional form to fill out. And pretty soon they are spending more time filling out the forms than they are seeing the patients.
And the two or three patients that they will see may have a very high level of quality and quality measurement, but, in fact, are we, in fact, making improvements in the system?
So, it is really important for us to get outside of our functional and organizational boxes and actually have some fundamental principles and missions of what we are trying to achieve and to test that. Over the last few months I have been visiting local health departments, which are really the cutting edge, the front line of many of the service delivery things. You know, we on the state level, we have seven different human service agencies, but local health departments generally tend to be the only game in town. And how do we help them actually do their work? In many ways, our definitions are so narrow because of our organizational biases that we don't think outside the box and they have no choice in doing that.
When we talk about health and information, are we actually providing tools for them to use in carrying out their public health mission of assessment and policy development and assurance? By and large, pretty much we are not. You know, we look at the challenge that they face and we make a presumption and we frequently do at the state level and I also see it at the national level, that many things that have been accomplished will continue to be accomplished, particularly in the public health system, but are not necessarily based upon evidence of practice.
Immunizations is a good one. Many people are challenging our immunization policy because they say how do you prove that it works. Where is the evidence? Some of our evidence is 40 or 50 years old. It is not in an automated database. So, there again, the challenge of that in many areas is related to water wells and sewage and all these sort of things. So, I think we have a challenge not only to provide information that is meaningful on a national level, but that is also meaningful in places like Green County, so that we can not only improve the quality of our system of measurement, but also improve the quality of care.
So, I would encourage you to think about some of the broader aspects so when we talk about health -- and this relates to the NCHS -- how narrowly do we define "health"? And that, in many ways, defines the data sets that ought to, I believe, be brought together in one location. Many of the data sets may not belong in one center; data sets from EPA, data sets from the Department of Agriculture, all these things, which in my world define "health" in a very broad sense because that is my charge for 11.7 million people in the State of Illinois.
So, I certainly look forward to the opportunity. I think that is something that we as a committee maybe can bring and help the different agencies in trying to define in a much broader sense as we scope down to our narrow charges.
MS. HUMPHREYS: If I could just sort of comment on that because I think it is really important. One of the issues as we talk and think about quality and performance measurement, I think, in the recent couple years, it has been very much driven by a clinical paradigm and particularly for children, whose health care and health status ultimately depends on the interactions of multiple systems and because of their greater likelihood of being in public systems because of the SES issues in this country, with 20 percent of children being poor, I think we still have a lot of work to do conceptually about defining the boundaries of accountability and intervention and what is quality that the insurance system requires, what is quality that the community is responsible for. Who is accountable for what? How do they work together?
Obviously, I don't think there are answers yet, but I think a lot more thought needs to go into articulating that as population responsibility shifts and our expectations of what we get from the different systems evolves.
DR. IEZZONI: A slightly different topic. I was struck by how many of you are relying on patients or consumers as the source of information either through the National Medical Expenditure Survey, through the National Health Interview Survey, through the Medicare Current Beneficiary Survey and through the new effort to evaluate functional status.
Okay. Given that, how do we deal with the fact that in the next century in certain states, majorities will not be English speaking, very quickly, as we move into 2010, 2020, 2030, and the fact that in certain states there will be very significant minority populations that are not Spanish speaking either. So, how do you, as you think about dealing with getting information from patients, increasingly or from consumers increasingly to support your data needs, deal with the fact that populations that are not English speaking aren't going to be increasing in proportion?
DR. SONDIK: Directly. That is how we do it. I mean, I think we have to deal with that. I think that is a fact of life and we need that information and it means that we will simply have to deal with it directly and not send an interviewer, who only knows English, to talk to someone who doesn't. We are going to have to find ways to accommodate that, which means resources.
As I have said before, as many of us have said before, there is going to be more and more demand at these local levels and I think we in the federal agencies have to find ways not necessarily to collect it ourselves, but to facilitate that collection and in some cases to actually collect it ourselves.
DR. SIMPSON: I think you have raised a critical issue. The other aspect on top of what I had already mentioned that I think we really need to focus on is some of the up front work in understanding what the person who goes out to collect the data needs to ask that is driven by an understanding of patient values, patient preferences, decision-making approaches and then development of tools that are both cognitively and psychometrically appropriate for collecting the information in a way that then will actually reflect the diversity of preferences and health states that exist.
I think that is a huge methods challenge. So, there is a lot of up front work that needs to happen, as well as then the very real challenge of how much it is going to cost to do this.
DR. JENCKS: I would really like to underline that the two pieces are complementary and if we drop either, we lose very badly; that is, we do have to be language competent and otherwise competent to get questions asked in a way that people can understand them. But we also have to recognize that the framework within which people respond is not going to be the same and there is a real problem here, which is we can go to some of the larger minority populations, if I can call them that, and do a fair amount of stuff, at least trying to understand what the difference in preference is and ways of viewing things.
Clearly, though, we can't recalibrate every instrument in every language that we are dealing with. It has been hard enough to get some of these instruments calibrated in one language and doing the psychometrics over and over, it is prohibitive and we need a way of thinking about that problem. I mean, it is not that the correct answer is we will calibrate it in English and we will translate it into the other language. I don't know where the right place to draw the line is, but we have to be realistic that we can only do certain kinds of work and, therefore, we have to set priorities. We have to figure out which things it is really important to adapt to the particular minority population or special population and which things we can sort of say, now, for practical purposes, we can assume this is going to be similar.
We know it won't be exact but that is the way we stretch our resources.
DR. SONDIK: I think you put your finger on it. It means resources. Obviously, it always comes down to that. You know, it brings me back to John's point. I get concerned about -- we need the right kind of input in order to make these resource decisions is what I am groping to say. I think, you know, sitting in Hyattsville or Washington or Bethesda, we don't really see the world and we are trying to balance everything from a national picture to a very local picture and we need this guidance in part that the committee can give and maybe through some kind of a structure or process that the committee can see for us to get this on kind of a continuing basis.
I just wanted to go back to John's question again. There were a couple of -- more than a couple of parts to that, but two were one having to do with the burden, the information burden, and the second actually asking some fundamental questions about what is health and how much we need to know and how do we integrate things together.
I think the burden question is very important and in a way I think it relates to this question as well. How much do we need to -- you know, how much are we going to burden the system, if you will, with all of this information?
But the other side of it is that it -- the sort of what is health is something that I think is particularly important because the way we are going now with technology, it is going to become easier for us to link this information and I think in some areas of the country people are linking this information on a state basis. We tend to do less of it nationally but we are going to have the capabilities, I think, of doing this more and more and I think we should underscore that as a critical point, that we collect a portion of what is needed, but what we are collecting needs to be integrated with other types of information.
If a community -- easy for me to say; I am not at a community level, but it seems to me that if a community wants to deal with a particular problem, whether it is -- let's say it has something to do with a child health problem, the community needs to integrate information on that, along with information on education in that community, criminal justice information in the community, welfare information from the community and so forth because you don't look at something really in a narrow way and be able to really understand the problem.
I think we need to focus more on how you do that integration and making the links available between these different data sources, all with minimizing the burden on the individual.
DR. COHN: Well, first of all, I want to thank the panel. I think it has been a very exciting set of presentations.
I was actually struck by the amount of potential synergy that exists between the various groups that I am seeing here, the various departments. I am actually sorry that David Garrison didn't talk after you had all had a chance to present, only because I am left a little wondering about how the HHS Data Council was actually coordinating efforts, preventing us from wandering off in different directions.
Obviously, I think that Dr. Sondik's efforts in terms of trying to get people together to really talk about the fundamental data efforts is commendable and I think it well needs to be done. But I am still -- HCFA, Dr. Jencks, you obviously commented about one of your initiatives. I am well aware of another one that is going across my desk, which is not integrated data strategy for post-acute care, but integrated data strategy for risk adjustment for Medicaid risk. It is a whole other initiative and I hear other initiatives coming down the way. How are we going to integrate these things into an overall data strategy? How is that going to happen?
I mean, can you all assist me with this one, how you see it happening?
DR. JENCKS: My instinct is you are asking too much. The question that we ought to feel real bad if we can't answer at the end of the day is when we look at the challenge we face, did we work with all the other people who had information that they could bring to bear on it? Did we use their information and so on? Did we do it together? If we are looking at risk adjustment, if we are looking at what we are going to do about the pneumococcal and influenza vaccination rate for the elderly, if we look at what is happening --
DR. SIMPSON: The Secretary has made it a clear priority that quality is important and I have seen a level of collaboration across the agencies around quality. And data comes in as part of that, but it is not central around data. It is what are we doing to improve quality? What is the government's role in quality? How can we do our job better?
I have only been in federal service about four years now, but the last six months feels very different to me in terms of collaboration across the agencies with some very real products of ongoing communication and dialogue towards this quality goal.
So, I think it is happening but, again, it is sort of goal focused or aim focused and that is the way my mind works rather -- and data is one of the supports for that, but it is overlapping diagrams, I guess.
DR. AMARO: I wanted to follow up on Lisa's comment. Actually, when you were giving your talk and asking for our suggestions, I had written this down as one of the either committees or I don't know what the structure is going to be that, Ed, we could -- you know, how you are thinking over there -- a one-time conference or committee, but that this issue of method for better capturing the health data, quality of care and access for different vulnerable populations, including racial and ethnic populations in linguistic groups, as well as other groups, has been something that, you know, we have been discussing for many years that sort of goes in and out of, you know, interest and we have one-day conferences and -- but what I think we really need is some kind of ongoing structure mechanism to keep our developing this agenda and these methods and that we need a broad array of people at the table in that discussion.
Often times in the past, not always, there has been mostly those of us who work primarily, you know, most closely with these communities that go repeatedly over time to these meetings, but that we really need, I think, to go beyond that at this point in time, that it really is going to need the thinking of all scientists and people involved in this field to figure out how we are going to handle these questions, which is really going to increase and which are really very serious ones.
So, I think that as you consider how we might help you, that we think about setting up some kind of mechanism that is ongoing, that is going to help to develop an agenda and also that includes building internal capacity within DHHS to help the agencies move forward on these issues so that it is not solely reliant or primarily reliant on external people who come in periodically, that people who can carry the agenda and have the expertise to do it internally.
So, I think it would be great to structure some kind of initiative based on that, that focus.
DR. SONDIK: Well, in terms of the meeting, I saw the meeting as giving really, I guess, the critical challenges that we need to respond to, at least the first one. Then the second one dealing more specifically with NCHS would focus on what are our strengths and weaknesses and changes that we need to make in order to be able to deal with those challenges.
In terms of the point you made about, you know, continuing effort, that is where I see the National Committee coming in. In fact, you are well-structured to give that kind of outside guidance, but I agree with you. We also need efforts inside the Department.
I have also seen -- I don't know how much of a change it is, I guess, because I have seen the Department work together a great deal. It is not -- I don't see it as a significant change. I think that the Data Council, I think, actually over the last several months has really seemed to kind of gel in dealing more specifically with issues.
Maybe these things just take time or maybe it is the leadership specifically, but it really has focused on issues, even to the -- even to Dr. Starfield's issue earlier, related to the relationship between, as I took it, HIPAA and the uses of standardization beyond simply that focused on financial transactions.
That has had some discussion. So, we seem to be developing in the Department an agenda and I actually feel positive about this thing going in the right way to have us focusing on these issues that cut across the different departments.
There are a number of initiatives that are underway that I really can't get into that, in fact, involve multiple -- the multiple departments in a very unified way and I see that as really quite positive, particularly one that relates to the specific area that you were talking about. But we need -- we need not only the Department itself, you know, but we also need this guidance and input from the communities as well.
DR. DETMER: Mentioning HIPAA -- we are going to have to move on to it, but let's take Richard's comment and then we will try to wrap this piece up.
DR. HARDING: In listening to Lisa and Hortensia's question about the ethnic or language specific questions and how to get the right stuff from people, as a child psychiatrist, I kind of go back one further step and get concerned about just the basic issue of trust. You know, we don't have much trust in this country right now and it has been deteriorating in the last couple decades and people don't think as highly of their professionals. They don't think as highly of their government and so forth. So, we are asking them to come forward and give us information that is -- that I would assume they would hope that would be used positively for them. That is the only way we are going to get accurate information.
If we don't have that, they are going to give us baloney. And if they give us baloney, then we are going to have baloney processed and pass it the other end of the process.
What can -- and I don't expect an answer on this. I am just commenting. But what can we expect? How can we
-- I mean, that is something that this committee, I think, has to do is really help people with the idea of trust, that we are here to help you and that is not a -- you know, we are here from -- well, you know. It is the same, that we really are and that if you give us accurate information, we will use that in a good way. So, don't baloney us.
That is already happening. People come into my office and say what are you going to do with this? I don't want you to put this in the record. This is something that is just going to stay between us, right?
So, they are screening their reports and then doctors, of course, are screening the reports and so what are we getting to? What is going to be in those records and databases and so forth?
I will stop with that. I would go on, but that is a real concern, that if we don't have basic trust, then the whole thing is going to be tainted.
DR. JENCKS: We are immensely sensitive to this because we have used data in some ways that probably haven't altogether heightened trust as much as we would like and the problem in part is what the reality is about the care; that is, if people -- I mean, part of my response to Dr. Lumpkin's concern about the data burden we are putting on, is we have to recognize that as a system, the health care system is not doing a very good job.
Whenever we look at whether it systematically does something, we tend to find that it doesn't. I mean, we have had this extraordinary success in childhood immunization, which says something about what we can do when we finally get on an issue and say "yeah." But we haven't measured a lot of things that we haven't found a significant opportunity to improve.
It is real hard to see how we are going to say, yeah, but I am sorry, the beneficiaries aren't smart enough to use these data responsibly, which is -- you know, if we don't -- if we keep it all a secret, is the message. It is a terrible dilemma. It is what the subcommittee of the Advisory Committee on Quality Improving Environment is, I think, tearing out what little hair remains on some of the heads of the members over is how do you balance these things because it is a very tough call.
DR. DETMER: Lisa, I will give you the last word.
DR. SIMPSON: Well, one quick comment on this issue of trust, which is a huge conundrum, one aspect of it from a research agency is that I think we need to do a much better job at communicating the value of the lessons from health services research and how that can benefit individuals to improve their own care or to receive better care. And that is a real challenge, I think, for the whole health services research community to take on.
We don't know how to do that very well yet.
DR. DETMER: I thank each of you. I think this has been very useful to us, as we now also move forward to working with you and certainly I appreciate the opportunity to work through the Data Council. We really do have an open door there and I think that is very positive.
So, thanks a lot.
At this point, Dr. Braithwaite, would you come on up. I think John isn't going to be -- Fanning -- is not going to be available, as I understand it. But what we were going to get is the continuation of the update from the Department on where we are relative to the HIPAA legislation.
DR. BRAITHWAITE: I will give you an update of where the Department is with the implementation of administrative simplification standards. We will be talking about this at greater length in the Subcommittee on Health Data Needs, Standards and Security breakout session this afternoon. But just to give you the perspective from the technologist reporting to management, it is 99 percent done.
Always when you ask someone to write a program, of course, they come back. It is 99 percent done and they keep doing that for the last several months of a project because it appears to them to be that.
In fact, all the decisions with one notable exception I will talk about have been made about standards. They have been published. They have been told to the public and they are available on the Web site of the The Washington Publishing Company, which I am not sure this committee maybe knows about directly, but the government, that is, the different agencies of HHS and other departments like the VA and the Department of Defense and so on, contributed some money into a pot and we bought The Washington Publishing Company contract to make sure that the implementation guides and the code sets to support them were available on a free Web site, so that people could get busy and get working on these standards while we work in the background on the documentation and the paperwork and everything that makes them legally adopted, according to the law.
The Web site is WWW.WPC, as in Washington Publishing Company, -EDI.COM/HIPAA/ and that will get you to the list of all of the implementation guides for the various standard transactions that we have adopted.
DR. DETMER: Could you repeat that?
DR. BRAITHWAITE: Sure. I will get that one to you later.
Well, what about the documentation of the paperwork that sort of backs that up? You realize that no technologist really wants to do the documentation. They just want to do the job and get on with something else. But we do have to do that.
The documentation in this case is called NPRMs, notices of proposed rulemaking, which go out for public comment and then final rules. The law says that we have to publish final rules by the end of February of next year. And we have aggregated the various -- the nine transaction standards and the various supporting standards that we are required to adopt into six of these NPRMs and most of them have been written at least in an initial draft. Some have actually been started through the clearance process within the Department.
Sometimes we run into surprising problems, legal issues that we hadn't considered; obvious ways to make something implementable by charging a fee that turns out not to be legal in somebody's opinion. So, we have got to back down and figure out some other way to do it.
Those are the kinds of issues that are being resolved as part of this documentation process, and other people who feel that the explanations that the teams have written for these things are either too technical or not broad enough for the general public audience. So, we have to go back and redraft that documentation and resubmit it.
So, it is in that sort of review and comment and rewrite and review and comment and rewrite kind of process at the moment. We set the deadline to get these NPRMs out by the end of October, which is just past, and, obviously, we did not get any of them out. We will certainly get -- I shouldn't say this -- if I say we should certainly get at least one out by the end of November, surely, somebody is going to stop it just to prove me wrong. But we are trying desperately hard to do that, but make sure that those people who really need to know what the standards will be for implementation purposes have access to them in the meanwhile as they are undergoing their final fine tuning and can look at them seriously for implementation within their environments.
About the NPRM specifically, I guess, the transaction NPRM is in initial review, which includes all the transaction and code sets and, hopefully, we will have that into full departmental review next week sometime, unless somebody finds another glitch.
The national provider identifier NPRM, which has been through departmental review and is now being redrafted for a more global review and public release is sort of getting close to that point, but I am not going to say anything more than that because I have been proven wrong before.
The security NPRM is a little bit behind the times compared to those first ones, but, hopefully, that will be into the review process shortly. The other identifiers, the payer ID identifier, is waiting for responses to the questions that were brought up about the provider identifier because they are related. They are essentially identical with some tweaks in the middle that make them different in terms of the documentation and paperwork.
So, once we have some answers about the first one, then the other can follow quite quickly.
Then we come to the major exception, which is the standard for the personal identifier. As you know, this committee recommended that we do nothing about that, but wait for Congress to do something more about privacy. We felt that wasn't quite meeting the sense of the law, which said do it, make a standard for a unique identifier.
On the other hand, there is no consensus out there and we have been instructed to adopt consensus standards where they exist and if they don't, try and make a consensus standard and we haven't been able to make a consensus standard in this issue.
So, we are in the process of laying out what the rational options are, the pros and cons of each of those options, throwing away some of the options that are just totally impractical, narrowing the field down to something that can be talked about and decided upon.
The Department is discussing exactly how to publish this for public comment so that everybody can get their licks in before we make a department level decision about what that standard will be. That probably means that the notice that will go out about what those options are for public comment will be a little bit late. I am loath to specify a date and time here, but, hopefully, it will be in the realm of the other imperiums that come out, but that the final rule will probably be delayed beyond the others because of the lack of consensus for us to build on.
We are also working in other areas. In addition to sort of just putting out the standards, we are looking at the infrastructure for maintaining these standards. I have talked to this committee about that before, how important it is that the content committees are assigned so that people know when they want a change in a health claim, for example, standard, they know what committee to go to and what process that goes through.
We have been talking with the standards developing organizations to make sure that they have a fast track process, so that something that comes up as a business need can be evaluated by a content committee, forwarded on to a transmission standard developing organization committee and get it run through in a reasonable amount of time so that the whole process is not only responsive to business needs, but is -- operates rapidly enough to get the consensus that this standard setting process requires in a reasonable amount of time.
Otherwise, we will end up not -- we will end failing because the standards will not be keeping up with the business needs of the community.
That gives you more than enough information to give you a flavor for where we are at at the moment and, as you all know, especially for those of you that are participating as liaisons with the development teams that are actually hard at work doing this, that a lot of good work is going into develop the consensus on each of these things and putting out something that will work for the whole industry and we are very proud of the progress that has been made in the short time we have been working on it.
Thank you. Any questions?
DR. DETMER: Clem.
DR. MC DONALD: Traditionally, at least to an approximation, standards activities have been more with building the structure and the envelope and sort of the tools to put in kind of very specific information, like words or paragraphs or songs and that is, they have been very, very successful in the CD ROMs. Lots of things are very, very successful in that domain, as has been many of the medical message standards or the health care message standards.
But I worry a little bit about -- and I guess I am not clear on when you talk about what has to be updated -- I don't want to get too technical, but you can create a standard so much of the updating is not in the standard. It is in the vocabulary or it is in the list of codes and you can have flexibility. But that is another story. But of those codes that are needed, that is a thing that will change a lot. They will need one more code.
With the standard cycling and the voting, it is hard for that kind of stuff to be managed that way. So, there often are sort of external bodies that manage that. ICD-9 is a good example. X-12 has ICD-9 as a code, but the ICD-9 groups -- I guess it is HCFA and company -- kind of manage that.
Well, I guess what I am getting up to is that you have described a lot of codes and you described that people can get at these in The Washington Publishing and that you had to pay some money to make that available. In the context of what Betsy said earlier that there is some thought that perhaps those codes could reside in a free area and not have to pay money for, like NLM's files and UMLS, is any thought being given to the relative balance of whether you could keep the fast moving codes out of the -- I don't want to say this wrong -- but out of the formal standards activities in sort of a subgroup that could more quickly manipulate them and perhaps leave them permanently in a more public area, where they don't have to be --
DR. BRAITHWAITE: That is a good question, Clem. The intent of the law was to separate the maintenance of the code sets from the maintenance of the transmission standards themselves. It specifically split those out and particularly when the law says that the Secretary can only update the standards once a year. Code sets were not included as part of that restriction. So that codes can be updated on a daily basis or as necessary as the new needs arise in the health care arena.
As you have alluded to, there are code sets like CPT that is included in the implementation guides for health claims, which is not maintained as part of the implementation guide. It is maintained by another body. I think the general idea of making changes in code sets -- having the changes in code sets made by bodies who are particularly sanguine about doing that and doing it on a rapid basis, but separating it from the bits and bites of how you get the stuff from one place to another is, in fact, being embodied in these standards as we write them.
DR. DETMER: This is on the Internet as you know today and apparently they are having a little trouble picking up. So, speak up, if you don't mind.
Simon.
DR. COHN: I will try to speak up here.
Actually, this is, I think, sort of an add on to Clem's question about the sort of issue of change management, which I think he is talking about in terms of codes, I really bring up into the more global issue and I think that the Subcommittee on Health Data Standards recognized that identification of these standards were just the first step. It was really more a question of how you manage the updating, change, version control and all of this.
Now, I think the one thing I am unclear about as we talk about NPRMs is how much of all that is being addressed in that or are we looking upon that as sort of follow-on documentation and regulations as that gets a little more clarified? Can you comment?
DR. BRAITHWAITE: Some of that is being addressed in the NPRMs, but the push has been get the standards out and then worry about making the process for maintaining them smoothly integrated with the business needs of the community and we have sort of taken that tact because it will take a fair amount of time and negotiation, getting agreements on all the committees that are involved in this stuff. This is not a sort of government -- it is not the DOD, where we can say, you know, do it this way. This is an industry-wide consensus building process and it is going to take some time to make all that work smoothly.
But everybody seems to be moving in the same direction and on the right track to do it in a way that is responsive.
DR. COHN: Just a follow-on on that, do you see these pieces as eventual future NPRMs or would they be handled in a different manner, these sorts of decisions, or agreements on process.
DR. BRAITHWAITE: The Department hasn't made decisions about that yet, but I personally do see setting these processes for maintaining things as things that would be discussed in NPRMs and set as part of the standards eventually but not --
DR. COHN: Not now. Okay.
DR. DETMER: Dr. Braithwaite brought up the point about the notice of intent and the unique identifier issues. I think that in the wake of our last meeting there were some letters and dialogue that went around and I think that in terms of our breakout sessions, it seems to me that, as you notice on the agenda, that we talked about recommendations to date and also issues relating to the unique identifier. I think what would be helpful is if the subcommittees would talk through that somewhat.
I think that we -- and clearly, the committee made its point and I think that point, in fact, echoed through the Data Council. I will ask Kathleen to comment on this in a minute.
I think on the other hand, the law is, as you said, pretty specific and I think the question that we need as a group to ask ourselves is what kind of a process would we consider doing with what kind of a time line and possibly coming forward to recommendations. Probably not unanimously, would be my guess, but at least do we have some obligation to relate to the Department on this since we are advisory to the Secretary.
But would you weigh in on that, Kathleen, a little bit?
DR. FRAWLEY: The last Data Council meeting, most of the agenda was focused on particularly this whole discussion of the unique personal health identifier. Susan Abernathy from CDC did give an overview of the teams' deliberations and the candidates for consideration. And at the Data Council meeting, there was discussion and a decision that a notice of intent would be useful.
But there was discussions about the role that the National Committee could continue to play in this area. There is concerns. Number one, there has not been the amount of input from industry that the team would like. So, of course, in order to say here is a consensus standard or this is what industry is recommending, the team has indicated they have not had as much input from industry as they would have liked, as compared to other standards that are proposed. There are concerns also about cost benefit, about utility of some of the candidates that are under consideration and a major focus of the discussion did focus on privacy and the sensitivity of the Department in terms of this particular issue.
John Fanning spoke to the issue and a number of people who attended. There was a discussion about the fact that it would be important for the committee to perhaps hold hearings in this area to get more input from industry because there has to be a recommendation. And, obviously, the Department is sensitive to the privacy concerns and also to the provider community in terms of whatever is adopted, that it be useful and not impede, you know, some of the work in the area.
So, there was a recommendation that we reopen discussions and see if there are steps that the committee could take to provide the Department with more information and hearings was one of the suggestions.
DR. DETMER: So, I think it would be good to talk about that in your subcommittees, so when we come back tomorrow, we can see where we are going to go on that.
Are there other items on the -- yes, Marjorie.
MS. GREENBERG: I might just add a word on that, that in addition to the need to hear more from the industry on the role that the committee could continue to play in having those hearings, there also was quite a bit of talk about the need for public education on both sides or all sides of the issue and hoping that the committee could also help the Department in sort of thinking that through.
DR. MC DONALD: I recently heard that the provider identifier has created a maelstrom. I am not sure that is exactly true, but that a lot of the insurance companies actually have their provider numbers with a lot of intelligence built in. So, in terms of the re-mapping of their software, it is a very large project, which I guess measures or emphasizes the difficulty of all this because that seemed like the simplest, easiest of all the things and a no-brainer.
DR. DETMER: Well this raises a good point as well, is whether we need to also re-look at all of these as they move forward, too, not just --
DR. MC DONALD: Well, I wasn't suggesting re-looking at it. I am just suggesting --
DR. DETMER: Well, I am not -- when I say "re-look," it is not changing the decision. I am just saying to see what, in fact, responses are, just like you brought back.
DR. MC DONALD: That may have been just a bad rumor, but --
PARTICIPANT: Do you want to withdraw it?
DR. MC DONALD: No, no, no, not what I just said
-- well, yes, what I just said might have been just a --
DR. LUMPKIN: Well, I think we need to clarify our role in this process. When there is a notice of proposed rulemaking, there is a comment period and there will be a ton of comments, which the Department will be charged with summarizing and making responses and certainly our liaisons to the various committees will be involved in that. I think that is different than the unique health identifier because really it is the notice of intent. There will be a number of alternatives that will be discussed.
So, I think in that instance, hearings may be useful and further discussion and input from the committee, but I just would be careful about trying to get too intimately involved in the process after the notice of proposed rulemaking.
DR. DETMER: That is good advice.
DR. BRAITHWAITE: Well, just to bring up the fact that HIPAA asks the National Committee to sort of keep tabs on the implementation process of these standards and at some point in time having a hearing to get feedback for how is it going, folks, would be very useful.
DR. MC DONALD: That is basically what I meant.
DR. DETMER: Okay. A couple of housekeeping things before we adjourn for lunch.
Thank you very much.
The Subcommittee on Health Data Needs, Standards and Security will be meeting in here. The Subcommittee on Population Specific Issues will be in 423-A, up one floor.
We also, some months ago, on a two-day meeting went out to dinner together and I don't know how many of you got an e-mail suggesting that we may want to do that and please -- I know some of us would like to. I don't know how many of you got that notice and how many were interested, but I think, if so, when would you -- we are going to be adjourning at 5:30. Would you just as soon go at 6:00 right after we adjourn or -- I mean, essentially go on over when we adjourn or what is your pleasure?
PARTICIPANT: I would like to check in the hotel.
DR. DETMER: Okay. So, you say like 6:30 or something like that? Okay.
We were over at Union Station the last time, which seemed to work. It is certainly an identifiable place to meet.
How many right at the moment at least are thinking about doing this?
Okay. That is great.
We will then at this point -- unless there are other --
DR. STARFIELD: Yes. Don, can I ask a housekeeping question?
DR. DETMER: Yes.
DR. STARFIELD: Can we have a reading on the dates of the March meeting, just to be sure? Is it the 3rd and the 4th or the 4th and the 5th or what?
DR. DETMER: I understood that to be 3rd and 4th.
DR. STARFIELD: So, it won't be the 5th. 3rd and 4th.
MS. GREENBERG: The minutes, and these are draft minutes that we really got out to you as soon as we had them -- the minutes, I think, talk in terms of three days for some of these in the sense of the third day might be subcommittee hearings or something, but I think it was the 3rd and the 4th that was the full committee meeting.
DR. DETMER: Now, we will talking about dates tomorrow, too, before we adjourn. So, it is still on our agenda.
I didn't mention also that at 8:00 tomorrow morning, the Privacy Subcommittee will be meeting in this room.
It is an open meeting.
We will close for now.
[Whereupon, at 12:45 p.m., the full committee meeting was recessed, to reconvene at 9:30 a.m., the following morning, Thursday, November 6, 1997.]