Room 505A
Hubert H. Humphrey Building
200
Independence Avenue, S.W.
Washington, D.C. 20201
Presentations on ICD-10-CM and ICD-10-PCS
Reports from Subcommittees and Workgroups
Discussion of Revised Guidelines
Future Meeting Dates and Agendas
DR. DETMER: Don Detmer, chair of the committee, and I would like to call us to order. We do have both members, as well as some people in the audience, that were not here yesterday. So I think it would be useful to do our usual go around and introduce ourselves, and then we will get into our agenda.
[Introductions of participants.]
DR. DETMER: Okay, thank you. I failed to mention that I am occasionally seen at the University of Virginia.
[Laughter.]
We have a full agenda today, and our item that we were going to take up at 11:30, the update on the President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry, is going to be moved forward.
We are pleased to have Nancy Foster here. She could not actually come later in the morning. So we will actually go ahead and let her speak first, and then we will get into our agenda. She is the coordinator for quality activities for AHCPR, and, as such, she serves as the key staff person for the Secretary's Quality Improvement Initiative and the Quality Interagency Coordinating Task Force and provides support to the administrator, John Eisenberg, on other related quality activities. So I have a sense that, Nancy, we will be seeing more of you as we also look at this quality area of a very important policy, and we appreciate you being here.
MS. FOSTER: I was beginning to think you were not going to see me at all today. Thank you, Dr. Detmer, and thank you to you and to the entire committee for accommodating my schedule change. I really appreciate that very much.
I was asked specifically to talk today about the Forum on Quality Measurement, and I will do that, but I want to set that within the context of several other activities that are under way, because they are all interrelated. I intend to talk for a brief time and then open the floor for questions and answers. I understand that is your usual procedure, and I hope that that will work for us, as well.
The activities I am going to talk about largely stem from the work of the Advisory Commission on Consumer Protection and Quality in the Health Care Industry. I know several of you spoke in front of that commission, and this group responded to the commission's report. So you are familiar with it. I will not dwell on any of the recommendations, per se, but they are all captured in the report called "Quality First: Better Health Care for All Americans" that was issued in March of this year.
When he received the commission's report, the President endorsed all of the findings in the report and called for the creation of two bodies. One was the Advisory Council on Health Care Quality. That is a body that I will talk about a little bit further in a moment. He also called for the creation of the Forum on Quality Measurement, which you asked me to talk about today, and he by memo, executive memorandum, established the Quality Interagency Coordinating Task Force. These are the three bodies that are interrelated that I would like to just talk about briefly today.
The Advisory Council on Health Care Quality was to be established within the public sector. That is, it would require legislation to establish it. Its purposes were to identify national aims for improvement, to track and report on the progress toward these aims for improvement, and to report on progress in improving measures. Finally, they were also supposed to report on the implementation of the Bill of Rights. This is an ambitious agenda, and I am no longer in a position where I follow legislation day to day, but most people that I know who do do not give this a large chance for being enacted this year, although it was proposed in a couple of different pieces of legislation. So that piece of the commission's recommendation at least is likely at this point not to come to fruition immediately.
What is under way are activities to develop the Forum on Health Care Measurement and Reporting. When the commission designed this, as you know from reviewing your report, they designed this to be a companion body to the advisory council, and so those who are developing the forum are struggling a little with the fact that there may not be this companion body in existence, at least initially.
But for the moment they are seeking to create this body in the private sector. Its purpose will be to improve the health care quality measurement and reporting to the nation. It is supposed to come up with a plan for quality measurement and reporting that is consistent with the national aims that the advisory council was supposed to establish. Absent those national aims, one expects that they will look at some of the major targets of disease and health care.
They are supposed to look to develop a core set of measures that could be implemented across a wide variety of purchasers, providers, et cetera. The forum itself is supposed to be broadly representative of all stakeholders in the health care industry, including purchasers, consumers, providers of health care, the whole gamut of people.
But really, as it is fashioned in the commission's report, its strength will come from having the purchasers at the table, from having their muscle in the marketplace, and from work through the oversight or accrediting bodies.
The forum itself is not yet created, and it will not be created immediately. What has been created is a planning group. This planning group also - at least those who are creating it attempted to make sure it was broadly representative of a variety of players in the health care system. It is being chaired by Gail Warden, who, as many of you know, is one of the chairs of a subcommittee of the President's Advisory Commission. Here is a part of the list of people who are on the planning group. Can you read that? If not, I will run through it briefly. You can certainly get copies. I will be delighted to provide copies. Let me just put up the additional names here, for those of you who are close enough to be able to read that.
The important thing to know is that, in keeping with the philosophy of establishing the forum group in the private sector, it is being staffed - the effort to create the planning - the planning group is being staffed out of the United Hospital Fund in New York. Jim Tallon, the executive director of the planning group, is the president of the United Hospital Fund, and two members of his staff are providing the chief staff support. They are Tracy Miller and David Gould.
This planning group has as its purpose to focus on the governance, membership, roles and responsibilities, funding streams, and staffing issues that need to be dealt with in order to create forum, as opposed to the forum itself, which will obviously focus on quality measurement and reporting.
They have begun their work with a kickoff event at the White House that was hosted by the Vice President. That was on June 17, and I mention here on the overhead that there was a document coming out of that. If you have not received copies of that, I would be happy - or I can work with Mike to make sure that you all receive copies of it. It is called "Challenge and Potential for Assuring Quality Health Care for the 21st Century" and largely provides documentation of what efforts are under way that we knew about in the private sector to improve quality.
They have as a planning group met subsequently twice, including meeting yesterday in New York City, and the very brief report I got from yesterday's meeting was that they are making substantial progress on the organization and governance issues related to the development of this forum, but I do not have any specifics to share with you.
At its first meeting, which I did attend, this planning group dealt largely with issues of how are they are going to reach decisions and how are they going to assure a funding stream, which are two critical issues. They agreed that they would operate by consensus. They did not agree on a funding stream yet.
Another activity that is under way and working pretty rapidly, at least for those of us who are trying to deal with it, is the Quality Interagency Coordinating Task Force. This is the group I mentioned the President established through an executive memorandum. His intention was to bring together all of the major federal players in health care and to enable us to better coordinate our activities.
At the table we of course have the VA, HHS, the Coast Guard with their health care facilities, the Federal Bureau of Prisons, and other members of the Department of Justice, the Office of Management and Budget, Defense, Labor, the National Highway Traffic and Safety Board, and the FTC.
This group in its initial actions has come up with five themes that they will pursue in improving quality and beginning to work together to better improve quality for federal providers, as well as federal purchasers. We are going to look at how to improve the provision of patient and consumer information about quality, to really enable people to choose based on quality. We are going to try to better coordinate the clinical quality improvement efforts within federal activities so that the HCFA PROs and the DOD efforts to improve their own clinical quality and the VA and Coast Guard, all of whom are working on efforts such as acute myocardial infarction and diabetes and other issues of importance to their populations can work together and not each try to invent their own wheel on how to improve the quality of care within each of those, and we hope by doing this under the larger umbrella to also bring to the table researchers from NIH and others who bring the newest research, the most important breakthroughs, and talk about how to implement them within the federal system.
We are also going to work on improving quality measures, something near and dear to the heart of the Agency for Health Care Quality - the Agency for Health Care Policy and Research. This, in fact, is being co-chaired by AHCPR and HCFA and is getting underway largely - at least first they anticipate looking at risk adjustment factors and seeing what risk adjustment factors we are using across federal agencies, where they are working, where they are not, and what we know from our current effort.
We are going to look at enhancing workforce to improve quality. This is an issue very near to the heart of labor, as they sit at the table. Also, HRSA is very interested in this. Their initial efforts, I believe, will look largely at how one educates the entire workforce about improving quality and how to change curricula in the appropriate professional schools to include quality improvement.
Finally, we are going to look at improving information systems. This effort will largely be led by the DOD and the VA, who have had an ongoing activity that has involved IHS and a variety of others in improving information systems surrounding the patient record and collection of information, and that is where their initial focus will be.
This group will be meeting on Friday to further learn where the various work groups are, what support they need, talk about resourcing them, and so forth. That is where they are.
As I said, that is a brief overview.
DR. DETMER: Thank you.
Maybe we can get the lights back on.
Kathy, do you want to ask questions or comment first, and then we would open this up generally.
MS. COLTIN: Well, I think, first of all, I appreciate your presentation. I would be interested in having the committee members get a copy of the paper, the Challenges paper that you mentioned, because I do not think we have received that.
Do you have any ideas about how this committee could best liaison with the work that is going on, either through your interagency coordinating task force or with the planning activities for the forum? Have you thought about whether there are particular roles that we might play?
We have talked ourselves in establishing a quality workgroup about the particular role that we might play in evaluating the information streams that are available through various sources, both in the public and private sector, to try to enhance our ability to evaluate quality, in particular, but also to improve quality, and I did not know whether in fact any discussion had occurred within any of the meetings about other roles or even that role for this committee. Have you thought about that at all?
MS. FOSTER: Yes, sort of. Within the confines of both the forum and the QuIC, the forum planning group and the QuIC, we realize that we need to reach out and touch base with this committee and others that can provide viable and very valuable insights and information for our work. However, it is fair to say that we are both in the formation phase and we are trying to figure out how to talk to each other.
Just to give you an example, when the Department of Labor first raised the issue of improving and developing the workforce for quality, they were talking largely about the entire workforce but particularly focusing on a group that they felt had not been attended to before, which were the nonprofessional workers, and when HRSA heard the topic, they immediately said, "oh, good, we are talking about professional curriculum development," and it was that sort of dichotomy of, no, we are not really talking about the same thing; let's sit down and figure out what we are talking about, what we can really do, that this workgroup is trying to deal with right now, and until we are talking to each other, to try to then talk to other organizations about how they might work with us is not yet feasible, but it is a recognized part of what we need to do as a next step.
MS. COLTIN: Yes, one of the ideas that occurred to me as you were speaking, we were meeting yesterday afternoon about issues around Medicaid and managed care, and one of the themes that comes up consistently is that there is a shortage, for instance, of well-trained personnel to work in organizations actually measuring quality of care, and in the past we used to have public health traineeships to help people get master's degrees in epidemiology and, you know, health data analysis skills, and right now the competition for people with those kinds of skills is so great that most organizations have a very difficult time recruiting them, and Medicaid agencies have expressed that they are getting a lot of data now coming in from managed care organizations and they do not necessarily have the right skill mix of people to be able to work with that information and to use it to assess care.
So from your workforce issue there are those kinds of perspectives, I think, that can come out of some of the work from this committee. So what I was thinking is that maybe the role that we had identified initially looking at data might actually be a little bit narrow, given some of the areas that you are interested in. There may be other areas where different committees, certainly the workgroup on computer-based patient record, as well, could feed into some of what you are working on.
MS. FOSTER: Absolutely. Both of those things would feed in dramatically to what we are doing and would be very valuable. The Medicaid agencies are not alone, and we are very much aware of the fact that there is a struggle for qualified people to interpret and understand how to utilize quality information when it comes in.
DR. DETMER: Lisa Iezzoni?
DR. IEZZONI: Yes, thank you for your presentation. It is an exciting time to be looking at this. I am a little concerned, and I hope that the order of your bullets on the slide about what your priorities are for the internal workgroup is not meaning that information systems development is at the last, because that was the last bullet on your slide, and when I heard you say that you are going be starting by looking at risk adjustment, I was thinking, well, I know a little bit about that, and the main thing that you have to really be focusing on is the information systems before you can even begin to look at risk adjustment, because I know that the data that are out there to do risk adjustment are so primitive in most settings.
On that score, I just wanted to make sure that included in the perspective on information systems are other care delivery sites other than the doctor's office and the hospital. One of the things that makes our subcommittee especially concerned is that places like the home, nursing home, rehabilitation hospitals, long-term care hospitals are not at the table as much as they are, and yet we know, number one, that they are driving a lot of the cost increases in health care right now, and, number two, that strategies for measuring quality in these sites, even though for looking at managed care in hospital care it is still pretty primitive, it is really primitive in some of these other sites and very functionally based, not diagnostically based and so on.
So I just want to put in a plea, number one, for putting information systems near the top of your list, and, number two, making sure that you are looking at the entire health care system, including people's homes and alternative delivery sites.
MS. FOSTER: Thank you, Lisa. To say you know a little bit about risk adjustment is a massive understatement, is it not?
Let me deal with - the order of bullets on my slide is not intended to infer any importance. We have five equal working groups, and our interest in improving the information systems, if you had been at the meetings you would know that that is a major issue with each of the departments, perhaps with the exception of Labor, because they really do not have one, but they recognize the importance of that to creating the kinds of information they want consumers to have.
And you are right about the importance of the other sites, as well. When I talk about risk adjustment, what we are going to begin with is trying to figure out who is doing what with risk adjustment, what are the applications, and what has worked and what has not worked within the federal system, because we are all doing some risk adjustment, primitive or not, and to just figure out what the baseline is and to share information across all federal agencies about where we are with the state of the art and what is the best of the state of the art right now is the goal, and then what the improvements are that we need, where are the most vital needs for risk adjustment.
DR. IEZZONI: And I will just clarify that you are talking about risk adjustment for quality measurement, because the Balanced Budget Act requires risk adjustment for payment for organizations under Medicare, and that really needs to be teased apart, because they may not be the same methods, although they may, in fact, rely on the same data elements.
MS. FOSTER: You are absolutely right, and we are talking - we are focusing slowly on risk adjustment for quality measurement and quality improvement.
My guess is that our initial efforts will focus largely on hospital-based or nursing home-based, organization-based care, just because that is where the best measures are right now and the best improvement efforts are likely to focus, and there are information systems, but that is not to deny the need to move beyond that to physician offices to home health care settings where they largely do not exist or are, as you have said, very, very primitive. But we are trying to figure out how to work together first and use what we have got and what we know and what we are doing to just exchange that information, because it is surprising how much we could learn from each other that we have not taken advantage of yet. That is where our initial efforts will be focused.
DR. DETMER: Michael Fitzmaurice?
DR. FITZMAURICE: In your presentation, Nancy, I really appreciate your coming here and letting us see the structure and the framework of it. As I work backwards, I see the public sector coordination and I see the forum that coordinates the private sector. The first group you mentioned, I think it also had public sector in there. Does that first group serve an additional purpose that the other two do not?
MS. FOSTER: Yes, Mike. The first group, the Advisory Council, was envisioned by the President's Advisory Commission as a group that would set real national aims for quality improvement. They would not have an enforcement mechanism. They would just be a body that says we really need to move forward on improving care for children with asthma.
DR. FITZMAURICE: People from the government as opposed to people from the private sector.
MS. FOSTER: No, it is a public sector staff organization and funded organization in the commission's vision, but the people around the table would represent both public and private sector.
DR. FITZMAURICE: It is like an advisory committee.
MS. FOSTER: Exactly.
DR. FITZMAURICE: Okay.
MS. FOSTER: And it would, in fact, as they envision the membership, as they talk about the membership, it would probably have more private sector members than public sector members, and the public sector members who would be there would be there because they are large purchasers or large providers.
DR. FITZMAURICE: Okay.
DR. DETMER: I think we recognize that model.
[Laughter.]
Other questions or comments?
Yes?
MR. NEWACHECK: Thanks again for coming. I had a question about how you are going to integrate the work of existing organizations on quality measurement into this new set of entities, and I am particularly interested in knowing how the work of NCQA and FACT[?], in terms of developing quality measures for managed care, how will that work be integrated into this new program?
MS. FOSTER: Good question. That question is very much in the minds of the people who are creating the forum organization, and ensuring that they have an appropriate role for the accrediting bodies as they create this organization is one of the issues on the table. One of the first things that group did was to hear from the NCQA Joint Commission, FACT, URAQ[?] - I am leaving one out, and I apologize for that - to hear about how they wanted that interaction structured. The answer is not clear yet, but the question is definitely there, and it is clear that they intend to be well-coordinated with the accrediting bodies so that they are not - so that the forum is not requiring quality measurement on some topic that does not fit well with how the accrediting bodies then go and assess whether someone passes or fails.
MR. NEWACHECK: So there will be an attempt to blend in the work that is going on in those organizations with this new effort.
MS. FOSTER: Yes, both at that formal level and then, it is clear, as we deal with measures, that some of the best measures that exist and the most progress has been made by organizations like NCQA with HEDIS and AHCPR with CATS and other tools that already exist, and those will clearly be part of the consideration, both at the QuIC and at the forum, when the forum gets going.
It is anticipated that the forum planning group will finish its work in January, that we will know then what the organizational structure looks like, and however they decide people will become members, people will begin to become members. Whether that is people or organizations is as yet unclear.
DR. DETMER: Lisa?
DR. IEZZONI: I also wanted to make sure that your group was thinking about access as a dimension of quality, which I know that the report to the President indicated that it was, and that really begins to raise the question about the role of surveys and the NCHS-sponsored surveys and the AHCPR-sponsored surveys in looking at quality. So urging you not just to look at data that are produced by people who provide care or who accredit care, because we have to remember that there are a lot of people who are not in the health care system and maybe should be, and so is the survey piece at your table, as well?
MS. FOSTER: I cannot answer for the forum, because that is not an issue yet they have dealt with. It is, as you know, with the commission, they essentially said this is a key issue, but we are not dealing with it under the terms of quality. It is really just once you assure people have access, you have to know they have access to quality.
In terms of the QuIC, to the extent that we are trying to expand access through the Medicaid program, through CHP, through a variety of other mechanisms, yes, but largely most of the federal players at the table are dealing with their own health care delivery systems, and those have very specific, if you will, membership rules, access rules, and we are not looking to change those, per se, under the auspices of the QuIC. It is not something we feel that QuIC could do.
DR. STARFIELD: I have some concern about your intent to focus only on hospital care for risk adjustment, because the information system challenges are equally potent for the ambulatory sector, as well, and for the other sectors that Lisa mentioned. For example, the certainty of diagnosis - if you are going to use diagnosis for risk adjustment, you know, what do we deal with rule-out diagnoses. You are much more likely to get those in the ambulatory sector than in the hospital sector. So if you are going to, I think, come to grips with the problems of risk adjustment and quality issues, you just need to go beyond hospitals.
MS. FOSTER: You are absolutely right, Dr. Starfield. I hope what I am describing to you is a continuous process - that is what we intend for it to be - and that the initial efforts will start where there is some light but that the intent both in the quality measurement workgroup under the QuIC and in the Department of Health and Human Services is to expand those areas where there are some light to find more measurement development, to identify the key areas for measurement, and risk adjustment development, so that we can use those tools, and to use the QuIC and the forum to help identify what the priorities should be for expanding those. So we will get there, I hope. That is the intention, is that we will finally get there, but we will start where we have something to work with.
DR. DETMER: Vince, and then Kathy Coltin.
DR. MOR: If you are going to be starting with a focus on institutions because that is where the data is, there are a large number of existing proprietary risk adjustment systems out there, plus certain accreditation organizations have sort of put together a compendium of these kinds of things which border on proprietary, and yet this organization forum is presumably going to have a public function and purpose.
Has there been much discussion about the relative role or issue of proprietary rights and making it public and all that kind of good stuff?
MS. FOSTER: Let me step back. When I say we are going to start with what exists and work in the institutional organizations, I was referring largely to the QuIC. It is unclear where the forum will start, although I suspect they will have to start where there are some data.
Whether or not they have access to proprietary methodologies, data, a whole host of things, will depend, a, on what they decide about whether or not they are going to purchase anything like that, b, whether they have a budget for that, and, c, what it is they intend, as a forum what they intend to focus on first in terms of providing information, quality reporting, and that is unclear right now.
DR. MOR: But since the organization, the forum, has not really been formulated yet and constituted, the level of aggressiveness it might pursue in sort of moving toward a public agenda is not yet understood.
MS. FOSTER: It is clear that their reporting will be in the public arena, that that is the intention, that no one has talked about it being anything other than open and in the public arena, but the question you were raising of whether they will have access to methodologies that are proprietary to enhance that public reporting is, I think, yet unknown.
DR. IEZZONI: Vince, I raised this issue when I testified in front of the commission. I made the bold suggestion that any method that was going to be promulgated should be in the public domain, and the commissioners disagreed with me, but they made kind of an interesting kind of - I do not want to be mean and call it fuzzy, but it was in fact a slightly fuzzy assertion that if any measures are mandated that the information about them should be completely available, but there is still that tension between having something be in the public domain and yet protecting the proprietary ownership of something when its logic is completely available.
So I think that there is probably going to be a little bit of tension, because remember, some of the forum members represent some of the big organizations that produce these proprietary measures.
DR. MOR: Well, that was precisely my question. If the forum process is being decided upon, in some sense that is an interest group structure, and the way in which that interest group structure is actually implemented has implications for this issue of public/private ownership, openness, et cetera.
MS. COLTIN: I wanted to actually pick up on the information systems goal that you had identified and just make one comment. I realize that the VA and the DOD have moved very rapidly into the electronic medical record era, and obviously that has major consequences for improving quality of care at the point of service, but my review of a lot of the electronic medical record systems that are out there showed that most of them do not have very well-developed functionality for any kind of population-based assessment. So if you want to go back and look retrospectively at the care that was given to a panel of patients in a physician's office or in a medical group or in a health plan, they are very limited in that type of functionality. Will that group be looking at those kinds of needs and the capabilities of these systems for supporting quality measurement at a population level?
MS. FOSTER: The QuIC workgroup will certainly be looking at the capacity for the information systems used by the federal players to support quality measurement and improvement. Will they delve into other measurement methodologies? No, they will keep it within the confines of what we are using federally, because that is all we have the capacity to affect. What will the forum do? I do not know.
DR. LUMPKIN: Just a brief comment in looking at the composition, our agency, about one-third of our head count is involved in licensing, regulating, evaluating, either health care facilities, health care programs, or looking at data on the health of the people of the state, establishing denominator data through vital records, and I just do not see that being represented, the states being represented in that way, at the table, and I think that brings some concern to me and certainly is an issue that needs to be considered in the future.
Many of the problems that exist, I think - you talk about expertise - partially exist because of the differentiation between the Medicaid system and the public health system that occurs at the states, where the epidemiological expertise exists in the public health system and the Medicaid system, which is seen primarily as a financial system, does not necessarily reach across.
So I would hope that efforts that are taking place at the national level would first certainly give the states a place at the table, because they will be there regardless, and, second of all, would foster a closer working relationship between the public health environment and the Medicaid environment.
MS. FOSTER: I am assuming when you are talking about the people at the table, you are talking about the people who are on the forum planning group. There is only one state representative there; that is Greg Sylvester from Delaware. There was an attempt to look more broadly, to try to identify who else could be invited to participate in the planning group, recognizing the importance of have a state perspective there, and frankly people struggled because there were so many different pieces of it at different levels within the state, and they could not identify a couple of other good candidates who represented enough of the whole to come to the table of the planning group. At least that is what they told me, but there was clear recognition that that needed to be there.
DR. LUMPKIN: And state health officials from Maryland, Texas, New York State, for instance, both head up public health and Medicaid, and I think those would be good examples, which just come right off the top of my head, but it is just something to point out that I think that states - when all is said and done, states will have a role and responsibility, and in many of the states, the buck stops at that level.
MS. FOSTER: You are absolutely right.
MR. MCDONALD: I just wanted to go back to Kathy's point about the population-based versus kind of institutional-based, and I do not think we can overemphasize how inadequate the institution-based data is for making all the judgments people want to make, but on the other hand, it is not a function of the functionality of the system. It is not a technical issue. It is a political or organizational - it is access to the data that stops them from having population data. It is not really functional properties of the system.
And these are very deep problems, because there is ownership, there is privacy. I mean, it goes very, very deep, and the CHINs'[?] inability to be what they wanted to be is sort of a measure of how hard it is to get that to happen, and I think it needs some kind of governmental incentive support. You know, it is a public health function, so we need to invent something good or new to solve this.
DR. DETMER: Well, Nancy, you can tell we are interested.
MS. FOSTER: I am delighted to hear that. I am glad to hear that. Perhaps in January it would be appropriate to provide you with information on what the forum planning group has determined would be the fate of the forum and how it is created.
DR. DETMER: Absolutely. I think we are clearly going to want to stay not only just in touch on a reporting basis but also, to the extent we can, on a collaborative basis.
MS. FOSTER: Terrific.
DR. DETMER: And I also would like to underscore the information system dimension of this, obviously, because I think you really are talking about appropriate timely data for all of these efforts, and ultimately I think we are talking about information systems. So at any rate, thanks very much. We appreciate it.
MS. FOSTER: Thank you for having me.
DR. DETMER: I guess I know Donna is here, but I do not know if Pat Brooks is here yet. Is Pat here?
PARTICIPANT: No.
DR. DETMER: Donna, I do not know if you are set up to have separate presentations and you could start, or do you have a tag team kind of set-up where you are going to go a few minutes and bounce back and forth or what?
MS. PICKETT: Separate.
DR. DETMER: Okay, if so, I think if you do not mind, I would actually like you to come on forward, and then we will get into our concept paper, actually, following this presentation on the ICD-10-CM/PCS, and then Pat I will introduce. Actually, I will introduce her in her absence, but when she comes then following your presentation, she can proceed.
Donna Pickett is medical systems administrator at the National Center for Health Statistics. She is responsible for morbidity classification activities, including maintenance of the diagnosis portion of the clinical modification of ICD-9-CM and development of the clinical modification of ICD-10-CM. In this capacity, she also serves as co-chair for the ICD-9-CM coordination and maintenance committee.
Pat Brooks, who will also be coming, is technical advisor in the division of acute care at HCFA. She is responsible for the coordination of inpatient procedure classification activities, including the maintenance of ICD-9-CM volume 3, and the development of a replacement classification ICD-10-PCS. In this capacity, she also serves as co-chair for the ICD-9-CM coordination and maintenance committee. Pat is also involved in revisions of the DRGs within the prospective payment systems.
So I think both these people are obviously the people we need to hear from, and we are pleased to have you here.
So, Donna, welcome.
MS. PICKETT: Good morning. Thank you. We appreciate the opportunity to come here this morning to kind of give you an update on where we are with the development of ICD-10-CM. I apologize to the people in the audience who may not have a handout. I was prepared to do a PowerPoint presentation this morning, only to discover that we were not quite equipped for it. I know the members do have a handout, and I will follow the handout. Some of the detail in the handout I will skip, as some of it is just by way of historical information for those who may not have had an opportunity to hear presentations on 10-CM development.
ICD-10 has already been implemented for morbidity and mortality in several countries, and this year we expect that there will probably be about another 12 countries moving toward ICD-10 for either mortality or morbidity. There are a number of new features in ICD-10: alphanumeric codes; certain chapters have been restructured; and a lot of new features have been added, particularly in the area of other encounters not specifically dealing with disease, injuries, or symptoms.
In 1994, NCHS awarded an evaluation contract to evaluate whether ICD-10 was an improvement over ICD-9-CM significant enough to implement as a replacement to ICD-9-CM. The results of that contract did discover, and not surprisingly so, that while ICD-10 was an improvement, it was not a significant improvement over ICD-9-CM, and one of the reasons why I say not surprisingly so is because ICD-9-CM has been modified every year since 1985. Therefore, many of the modifications that are included in ICD-9-CM obviously were not in ICD-10, because the final product, ICD-10, was completed toward the late 1990s, early 1990. So a lot of the things that we have continued to add to ICD-9-CM were not in ICD-10. Also, there are some structures and conventions of ICD-10 that would have made it difficult to implement for morbidity applications in the United States, and I will go over some of those.
The Technical Advisory Panel to the contract included about 20 members representing health care, health federal agencies, as well as users of the classification: hospitals, physicians, classification experts.
Now why do we need to create a clinical modification? Some of those are detailed on page 2 where you have some codes that are in the classification that are specific to mortality, and again, you would not expect to see those in a morbidity setting. One of the codes that everybody likes to quote is decapitation. Well, yes, you would expect to find that in a mortality setting and a lot of other settings in the coroner's office, but not in your health care setting. So we have a lot of codes like that. SIDS is another one, sudden infant death syndrome. So a lot of those codes had to be deactivated, and when I use the term deactivated, I am specifically referring to codes that are in WHO ICD-10; however, they will not be used in ICD-10-CM but will never be reused, because they do have a specific meaning in WHO, and if we are looking at comparability of statistics internationally, those numbers cannot be reused.
Also, there were a lot of codes within the injury section that are multiple where it describes multiple injuries. The Technical Advisory Panel felt that it would be better, far better, for data to just actually code the individual injuries as opposed to having a code that said multiple but you are not quite sure when you are looking at your data what that multiple actually represents.
Also, there is a convention in ICD-10 - well, in ICD in general - called the dagger asterisk concept. The dagger code is your underlying cause, and your asterisk code is your manifestation. For most conditions with ICD as promulgated by WHO, it would always require the use of both codes. An example of that would be like salmonella meningitis, where you would have a code from the infectious disease chapter and a code from one of the other chapters to give your manifestation. In ICD-9-CM, as well as in ICD-10-CM, we have created combination codes for those so that it would only require the use of one code to completely describe the clinical picture.
Many of you are probably not familiar with the dagger asterisk concept because it was not implemented in ICD-9-CM either. So those codes do not exist in terms of dagger asterisk in ICD-9-CM.
Now under the contract, a prototype of ICD-10-CM was developed, and when that prototype was turned over to NCHS as part of the final contract process, we reviewed it and discovered that while, yes, it did address a lot of the issues, it did not go far enough in addressing some historical issues that had come up either through the ICD-9-CM coordination and maintenance process or other issues that had been raised by some of the medical groups and other users of the classification.
So NCHS then went into what we call the phase II development of ICD-10-CM, and again, with that phase II what we have done is we further evaluated categories that are in ICD-10 to see if they could be further refined by the addition of a fifth or sixth digit. We evaluated what is called the residual category, the .8 other, which usually contains a lot of conditions that have not been called out for statistical identification but could in some instances be more important if you had more data about them.
We also, again, reviewed the roughly 10 years of ICD-9-CM coordination and maintenance committee minutes to identify recommendations that had come forth that would have been a very good idea if we had had room in ICD-9-CM to actually implement them, and we also worked very closely with a lot of the physician groups and other users of the classification.
On page 3, you will see a short list of some of the reviewers that we worked with in developing what became the next draft of ICD-10-CM.
I would like to point out that I know in previous national committee meetings, particularly the hearings last April, we had presentations by representatives of the nursing community who expressed concern that for some of the classifications that were being considered that it did not appear to have a lot of nursing diagnoses included in it, and I did want to mention that about a year ago we did meet with the American Nursing Association and reviewed the various nursing classifications - NANDA[?], Omaha[?], and a few others - where we did identify that there are approximately 90 to 95 percent coverage in either ICD-9-CM or ICD-10-CM for the things that are included in the nursing classifications. Yes, there are some gaps, particularly in the area of concepts that were described in the nursing classifications as knowledge deficits or potential for, and again, the issues there are that the person really may not have a condition at that particular point in time, and a disease classification identifies diseases well but not potentials for in the absence of symptoms.
But we did agree that there was a good coverage of the nursing concepts, and they were encouraged by the fact that 10-CM does a better job than 9-CM in that coverage.
Now, what have we done to ICD-10-CM? On the bottom of page 3, you will see the beginning of the list of the major modifications that we have made to ICD-10-CM. Yes, there is a sixth character, and everybody took a deep breath when we started saying that a while ago. We did not institute the sixth character throughout the entire classification. It is only in either chapters or sections where additional specificity and detail was needed, and we had to go to a sixth digit in order to accomplish that.
We have incorporated common fourth and fifth digit subclassification codes. For those of you who are familiar with the classification, you will know that some of your fourth digits and fifth digits are universal to either a section or a chapter, and they usually appear at the beginning of that section. So in terms of user-friendliness, someone has to constantly flip back to the beginning of that section to identify those codes.
In ICD-10-CM, what we have done is we have actually incorporated all of those fourth digit and fifth digit levels right into the code and created full code titles. So now you do not have these abbreviated code titles that read somewhat disjointedly depending on who put them together. You get all of the information that you need at one code level, as opposed to going back up to your three-digit or fourth-digit level.
We have added laterality left and right in certain chapters, primarily in the injury chapter where now you can distinguish a fracture of the left femur from a fracture of the left femur. That was done to address, again, some measure of severity, but also because in some of the data systems that are available, when you report an injury code, some insurance companies require that you only report one diagnosis code even though the patient may have two fractures, but you are allowed to report two procedure codes if you actually repaired both of the fractures. We found that to be somewhat distressing, and after reading over the minutes over the years of C&M and also talking to a lot of the users and the clinicians, the concept of laterality was considered something as a value-added, and we have incorporated it into the classification where appropriate.
Again, we have combined the dagger asterisk codes so that you only have one code to describe a condition without having to use two codes.
In the OB chapter, we have deactivated the fifth digits that are currently in place and, at the suggestion of the American College of Obstetricians and Gynecologists and others, have actually added trimester information to the OB codes.
We have expanded the drug and alcohol abuse codes. We have revised the diabetes codes that have been promulgated by WHO. Last year, the American Diabetes Association implemented new guidelines and categories for defining diabetes, and we have restructured the diabetes codes in ICD-10-CM to be consistent with those new ADA guidelines and definitions.
Lastly, we have expanded the injury codes. Again, on the handout you do have examples of what the codes look like, because I know it is difficult to try to visualize without seeing it what some of those things look like.
Of note for the injury chapter, for those of you who have used the classification, you will note that the superficial injuries include a lot of different types of superficial injuries. It includes abrasions, blisters, contusions, and superficial foreign bodies. In ICD-10-CM, we have actually added at a code-specific level the detail so that now you can determine what superficial injury you are dealing with, as opposed to pulling a bunch of records that all have been coded as superficial and then trying to figure out which ones were which.
Also, in a similar vein for open wounds, open wounds includes in ICD-10 laceration with or without foreign body, puncture wound with or without foreign body, and bite, and in ICD-10-CM, again, we have added subcategories to specifically identify each of those levels of detail.
Again, I am going to skip over a lot of the other details in here. This is, again, by way of information for those who may not have been intimately involved in the process.
I want to bring you up to date with things that have happened this year - or actually began last year. Between December 1997 and February 1998, we had an open comment period for ICD-10-CM, and CHS did post the tabular list of the classification and its crosswalk on the Internet and invited public comment on the classification. Interestingly enough, we got lots of comments. At the close of the comment period, the information that was sent in was sent to a contractor who compiled, reviewed, synthesized, all of the information and also made recommendations as to the resolution for the recommendations. We received approximately 1,200 comments from 22 organizations and individuals. I do have a short list of some of the commentors who forwarded recommendations to us.
We are still in the process of reviewing those comments. We just received the report about six weeks ago, and it is not final, but at least it is giving us an idea of where things are heading and the types of modifications that should be made additionally to the classification. I think it is encouraging that from the general comments that we have been able to review that there does seem to be the general sentiment that 10-CM is a major improvement over 9-CM and that some of the recommendations that are being made actually are more of a fine-tuning in nature.
Once we have actually gone through all of the comments, we would be pleased to come back to the committee and give you a little bit more detail on what some of the recommendations are, but on page 7, I do give you a summary breakout of what the contractor found in terms of reviewing the comments.
There are about 448 that were recommended for incorporation, and again, some of this is either code specific or chapter specific. There did not appear to be anything of a major nature that was overarching, but again, we would be pleased to come back at a future date and give you an update on where we are with that process.
Lastly, as I indicated on the very last line on page 7, we will be going through the contractor's report, as well as the recommendations, and reviewing those, going toward finalizing the tabular list and then revising the alphabetic index and the crosswalk and revising coding guidelines.
With that, if there are any - without any questions, I can turn it over to Pat.
DR. DETMER: Well, yes, what I think I will do, if you do not mind, is let Pat - I introduced you in your absence.
[Laughter.]
It is nice to have you here, and if the committee does not mind, I would just as soon let Pat also make her comments, and then we can just go ahead and open this up for either of you. Is that fair enough?
MS. BROOKS: I have to apologize for being late. I picked a train that came right behind one that broke down. So I have been underground for a good while.
DR. DETMER: Well, we are glad you surfaced.
MS. BROOKS: I am, too.
I will talk briefly about ICD-10 Procedure Coding System, and if you do not mind, I will just give a brief recap.
We started working on a new procedure coding system back in the late 1980s, and it was about 1989 that we developed a prototype for a new system and went through a couple of chapters to see how it would work. Three years ago, we started the massive contract that we have now completed where we developed an entire new coding system, and the very last stage of that was the testing to see if it would actually work when you went out and recoded records.
We used two of our system contractors to do the work. They are called the clinical data abstraction centers, or CDACs. The beauty of that for us was that they get a number of records from all over the country anyway. So when they were going about doing their own work, pulling up information, coding with ICD-9, they did at the same time use these existing current records to test our system and see if it worked.
We, in July, put the latest draft up on our home page, and so the results of the changes from the testing are there right now. I understand that you were all given copies of our summary report at the ICD-9-CM coordination and maintenance committee, and that is where we discussed the draft that we tested, the findings of the testing, and gave the public an opportunity to discuss what we should do next, and that is what I will go through for you now.
The first, I guess, and the thing that made me the happiest about the findings was that the clinical data abstracting centers, the CDACs, found that the new system had great promise. I think they were nervous, as we all were, going in. It was a totally different coding system. It looks different. It is not like anything else, and they did not even know if they could learn to use it very quickly.
They found that they could be trained in the medical/surgical part - and that is pretty much what hospitals mainly use today - in two days. Two days of training, and they were pretty much up to speed.
They went back and practiced and then asked some questions. We had a time for them to come back and ask some more questions, and it was interesting; because they had become so proficient at it, their questions were not they did not understand. They had already identified issues or omissions. That made us pretty happy.
Then we spent another day on the back part of the book, the parts that probably are not used as much in hospitals today - the imaging, the nuclear medicine, things like that - and in one day they went out and practiced and came back with their questions.
They went through 2,500 records each, a wide variety of records, and they found that the system was very complete, and we went through and asked them to use the national committee's guidelines that were established for any new coding system and asked them to respond. Did it meet these criteria, yes or no? And they did believe that they met them, the completeness, expandability, hierarchical structure, standardized terminology, improved accuracy and efficiency of coding, and reduced training time.
One interesting thing that they spent a lot of time on while they were testing it is they said, you know, the index is not complete enough. We really think you should improve the index, because it is so different, we do not know the root terms. But by the end of using it, they said, well, the index should be more complete, but we do not use it any more. The system is so logical once you learn it that why would you bother when you could go straight to that part of the book?
It sort of told us that using a system like this, you may want two versions, a version for a coder who is learning to use it that would have an extensive index or maybe a set-apart index, and then once they become proficient, they just do not want to be bothered with it. They go straight to where they need to be in the book.
I will go through some of the recommendations that came about at our coordination and maintenance committee, and it was interesting, because they were almost exactly the same as our technical advisory panel's recommendation except for one. One they differed.
They first believe that we should aggressively educate a lot of the industry about the new system so they understand it, and what we have done, at their suggestion - a very good practical suggestion - is we are developing a speaker's package that people in the industry, anybody who - and there are a lot of people who go around and speak on this now - so that they would have a very user-friendly correct package that they could use. Hopefully, we will have that finalized within a month and up on our home page. That was number two.
They also asked us to test the system on ambulatory records. They were very loud and clear on this issue, and the technical advisory panel was, too. They said they understood we were designing this system for inpatient use, but they said no matter what we thought, many hospitals currently use ICD-9 for inpatients, because they have to, and they choose to code also their outpatient data in ICD-9 so that they can do comparability study, and they said it is not fair to us, unless you let us know how well it works on ambulatory records. So we have taken them up, as I will discuss later, on that suggestion.
They also wanted us to test the system on patients that are not Medicare beneficiaries. It worked great on all the Medicare beneficiary cases, but they did not have a lot of OB cases, and there were not a lot of newborns. So it could work great; it could work not at all.
As a matter of fact, at one of our coordination and maintenance committee meetings, there was a representative from the Department of Defense there, and they said "are you aware the contractor you use we use too, and they have a whole lot of our records that are from a younger population, and feel free to test them on our records." So we are taking them up on that.
They mentioned that we needed more testing, and if we did more testing, we should use the CDACs, because they were very knowledgeable on what we are doing. As they went to phase II, it does not make sense to train another organization. Several people in the audience mentioned they did not want to do any more volunteer testing any more. They really felt like HCFA should proceed with another phase of testing.
They wanted us to test the training manual. The training manual was very useful, but they said now that you have changed the system, you should have the CDACs look at your final training manual. Mike Fitzmaurice actually made this suggestion, too, and I see he left right before I could mention it. Any groups that are doing outside research, any government groups, we should encourage them if they are abstracting data anyway, to think about going ahead and coding the data with ICD-10-PCS also so we get some different kind of people looking at it.
They suggested in the future we continue a process such as we have now for guidelines developments that includes the industry, that we not sort of do government develop a new system and then take back sort of all the control and interpreting. They wanted a summary paper explaining the procedure coding system, to come out with the final draft, and that is done, and that is up on the home page now.
Here is where we had some disagreement. This was interesting. Our technical advisory panel believed very strongly that in the final draft the code number should have no imbedded meaning. When we printed our final draft, we issued a set of numbers that had meaning and right beside it was a set that had no meaning, to illustrate the choice and make it more clear.
At the coordination and maintenance committee, on the other hand, they absolutely wanted meanings to the number. So I think that whole area needs more education and debate. That was the only controversial issue.
Where we are now is we are going into phase II of testing. We thought that was a very good idea. We got approval to use our CDACs for the testing, and what they will be doing during this year is they are testing the training manual, and they have completed that, and I will be talking to them tomorrow about their preliminary results. After they finish that, they will be doing a test of the system again, using a wider variety of patients, and they will be using ambulatory cases, and we are going to discuss their efforts in identifying the sample within the next few weeks.
They will reabstract and recode the records and send us a report by March. We will review it and have a final report by April, and then we will discuss with the public "here is what happened, here is what we found, what should we do now?"
That is pretty much where we are. The report, as I said, is available on the HCFA home page, and the complete new system.
DR. DETMER: I want to thank both of you and open this for comments and questions.
Stewart?
MR. STREIMER: Hi, I am curious - I know you are limited in what you are able to say about the Notice of Proposed Rulemaking that went out on the transactions and code sets, but I wondered if there were any issues that were brought in from commenters that might be of interest to the committee and might have a bearing on the continuation of some of the work that you are doing with regard to that particular notice of proposed rulemaking.
MS. BROOKS: I think it was interesting in the lack of controversy over continuing the current systems to get the initial standards. We expected more controversy there. So people felt that that was correct, that we should continue on and that we should work towards the future. Where I guess where we are having some controversy is there are a lot of coding systems that many of us had not seen before that felt they should be selected as national standards that have not ever been used.
DR. DETMER: Would both of you comment a little on some of those?
MS. BROOKS: Donna, I will give you the ball.
MS. PICKETT: One of them really was looking at alternative providers, alternative link systems. I believe that they had sent some information to the national committee at one of the previous meetings. We had some of them in the inventory. So we were not totally surprised by some of them. Snowdent[?] did come up, Medsyn[?]. So a lot of those we had heard of, but some of them are not in widespread use, either. So it kind of creates a bit of a problem in terms of how do we review it, because we do not have a lot to review it against, since it is not in widespread use. But we will be going through it and also obtaining additional information for those where we do not have sufficient background information about where it is being used and whether it has been tested anywhere previously, who the developers are, et cetera.
MS. BROOKS: I should mention that the most controversial area is not the ones we are talking about, but it is the local code issue. During the proposed discussions, before we wrote the notice, we had proposed to keep things just the same, and we had so many people come and say these local codes are terrible; do something; get rid of them. Just everywhere we went. So we were brave. We said, okay, we will propose something to get rid of them, and what do you think about this, and here is the structure we think about, and, oh, my goodness, we have gotten a lot of negative letters in, many negative letters.
MS. PICKETT: Actually, there are probably more of those than there are comments specifically addressing the standards we did recommend.
DR. DETMER: Lisa, and then Simon.
DR. IEZZONI: I have two questions, one for Pat and Donna and one specifically for Donna. The DRGs are used to pay hospitals for Medicare. Obviously, redoing the DRGs to the new coding specifications is going to be an enormous undertaking. How does that factor into your thinking about timing of proposing implementation of these two systems?
Then my second question, for you, Donna, specifically, is guidelines. Barbara spoke earlier at the first presentation about level of certainty of specific diagnoses, and you know where I am heading when I ask you this, you know, that hospitals are allowed to use rule-outs but ambulatory settings are not, and so the second question for you specifically is whether you still are going to have that dichotomy by site as to the level of certainty for diagnoses.
Maybe the DRG question first.
MS. BROOKS: Okay, first of all, in context of the proposals for national standards, if we propose a new coding system, then we would have to have some lead time for that. Obviously it would be after this initial proposal. We have promised the industry that we would give at least a heads-up of two years for any new coding system, and I think that is very reasonable.
On the DRG side, we would have to have a notice giving that information about where it maps to. In our current contract for the DRGs, we do have a statement that our contractor has to map in ICD-10 or any other procedure coding system. So that is part of the contract, and there has been some analysis on that. It is too early to do it, because we do not know what year -
DR. IEZZONI: But you do have to address that to really do an effective analysis of that.
MS. BROOKS: Right, but I guess we are several years from that issue, but first the decision would have to be made that, yes, we are going to a new or several new coding systems. At that point, we would have to tie in this other notice - you are correct - on the DRGs, and that would be subject to public comment.
MS. PICKETT: Some of the tools that we are developing for 10-CM would also benefit HCFA in that some of the mappings that we are doing from 9-CM to 10-CM, we are also doing a backward mapping from 10-CM to 9-CM, which I understand would help some of the analysis that HCFA would have to do in terms of the DRG analysis. So we will be doing that, as well.
Your question about guidelines. Believe it or not, those issues have already been raised. Pat just mentioned the public/private partnership we have in the development of coding guidelines, and that particular issue as to coding probable/possible/suspected and the difference between the inpatient guideline and the outpatient guideline has already been discussed through that process. I believe - and Pat, you can correct me if I am wrong - there was general agreement that we could, at least with the implementation of 10-CM, look to revising those guidelines, but again, not from 9-CM, only because of the major impact it would have in changing historical data, the trend data, and the DRGs and everything else that would be impacted by that change, but it is something we have raised, and we are getting support for changing that as part of the revision to the guidelines for 10-CM.
DR. DETMER: Simon, and then Clem.
DR. COHN: Lisa, first of all, thank you for asking those sets of questions, because you answered some of what I was curious about. I actually wanted to follow up a little bit more on the mapping and moving from 9 to 10, be it CM or PCS, and I was actually just referencing the HIPAA legislation. I was trying to decide how it might affect what needs to happen.
There is obviously a section here talking about additions and modifications to code sets and talking about basically preserving the information value of the data element that existed before the modification issues, effectively mapping and the quality of the conversion process. Of course, this applies primarily to additions and modifications.
Did we talk about moving from 9 to 10 as being addition and modification, or is this something else, from both of your views, in terms of moving forward?
MS. BROOKS: I would view that as a selection of a new national standard. We would, like in the initial standards we are proposing, the current existing ones, but we talk about in future years we may come out on an annual basis and say, okay, for whatever year, we will choose a new national standard, and it is ICD-10. Then we would have a comment period to come back, and we would have to lay out the implications for the effects that this would have and the issues, and there would be a comment period where people would respond, and we would look at that again and make a decision either to go ahead or to not go ahead based on the comments.
DR. COHN: Okay, so there would need to be that process. I guess the question, though, is is there a responsibility in terms of mapping and minimizing disruptions associated with moving, or does this only apply to modifications to ICD-9 ongoing or modifications to ICD-10 once it is there?
MS. BROOKS: I do not think we could propose any new coding system that we did not have the information mapped, because people could not respond to it, and that is why when we do our separate contracts, Donna with the diagnosis and we with the procedure, parts of our contract develop those mappings, and we just consider that part of the developmental effort. If you do not even use it, you know, you do not use the mapping either, but you could not responsibly develop a new system without understanding how it impacts the system it came from, and that would have to be discussed in any proposed notice. I think on any new system proposed, you would have to have those issues laid out.
DR. DETMER: Clem?
DR. MCDONALD: Well, I have a million questions, but I do not think I can ask them all today.
DR. DETMER: Maybe a half million.
[Laughter.]
DR. MCDONALD: Well, there are a couple of things. The group of people who reviewed it under phase II look like kind of a convenient sample rather than any kind of a - I mean, there are a lot of major groups - the American College of Surgeons - that were not involved at all in reviewing. American College of Physicians, primary care groups -
MS. PICKETT: This is just a partial list.
DR. MCDONALD: Oh, is this just a partial list? So does it really represent most of the specialties and interests? Okay.
How many codes are there in the CM? I know it is about 2 million for PCS or something like that.
[Laughter.]
MS. PICKETT: We have not done a new code count, but at last count I think it was about 30,000.
DR. MCDONALD: So it is not massively bigger.
In the ICD-10-PCS, one of the challenges in the original version, they did not allow eponyms[?], which really meant that you could do this vector coding and not say the thing that they really said, because it is a combination that does not quite exist. Did they give in on that finally?
MS. BROOKS: You know, I think all of that is still subject to debate, but in the indexes where eponym-type information leads you to the correct root procedure term, but as far as listing the eponyms in the tabular, no, you are correct. It is not there.
DR. MCDONALD: And then the last question is how mappable is it? I mean, just because you work on mapping does not mean you can map them. I mean, you cannot map color against sound very well. I mean, are there things that do not map very well? Sometimes coding systems do not map very well.
MS. BROOKS: We have that problem every year, even with the existing coding system. It is true; sometimes when we create - well, palliative care was one that really blew our minds where we never had a concept like that before, and we tried to map those for the DRG impact. You have to map it anyway to show the trend.
DR. DETMER: Pat, what was that example?
MS. BROOKS: The encounter for palliative care. It was a concept that had no trackability. But, you know, you still have to add it in, and we have to analyze it for our DRG. So that is true in some respects.
DR. MCDONALD: Well, I really was trying to get a sense, just your feeling - I mean, obviously, if you expand the codes, they cannot go backwards, but from just your gestalt, does it kind of map pretty well, or is it really pretty tough, leaving out the new codes, because they cannot map.
MS. BROOKS: Ours are mapping. Our contractor does not have it in a paper form. We hope to have it by the end of the year so everyone can give their opinion of what it looks like, but yes, there is a lot more precision. So you can make an easier decision with PCS. Some of these ICD-9 procedure codes, they are just like a whole lot of garbage and things you do not need. You know, we do not know what all is there in any given year.
DR. MCDONALD: Actually I was thinking more about the ICD-9-CM and ICD-10-CM, how they feel. Do they feel like they map pretty well?
MS. BROOKS: They are mapping fairly well, but again, there are some new concepts in 10 that were not in 9. So, yes, you do not have an absolute there, but for reimbursement purposes, you would have to force-fit it and have it go back to something, but we have a fairly good mapping. In fact, the first crosswalk was up on the Internet when we posted the tabular list. We did receive a few comments from those, as well.
DR. MCDONALD: Do you have that Web site?
MS. BROOKS: We have taken it down. Thank you for asking that question.
[Laughter.]
Let me explain why we took the tabular list and the crosswalk down. We were getting calls from a lot of people who were concerned that people were going to start trying to use the information, develop educational materials, actually go to doing mini-print versions of it, and it is something that is changing, and so we did not want to confuse anyone any more than is possible. So we took it down, and that was after a number of requests, because there are some vendors who actually have developed videotape instructional materials on how to code with ICD-10-CM and ICD-10-PCS, even though they are still in draft form. So we took it down, but we could make it available.
DR. MCDONALD: Okay, I would like to see it.
DR. DETMER: Barbara, and then Jeff Blair.
DR. STARFIELD: Three easy questions for both of you. Could you both comment on the NOS codes, the not otherwise specified? Pat, could you give an example of imbedded - and Donna, could you tell us what the testing times are, times for testing of the diagnosis codes?
MS. PICKETT: The NOS - I am glad you asked that, because that proved to be of great concern to many people, the fact that you may not be able to code everything. There is a report on that in our summary about how we gave in at the end. We held firm all along and said, no, we are not going to put an NOS concept in; we want you to code. But in the end, we decided to add it, but here is the interesting thing.
The CDACs kept telling us during the testing "I know we will not be able to code everything, I know it will not work, I know we are going to need NOS," but when they finished, they said, "you know, we didn't need NOS; we found homes for everything." But by this point, so many people had raised the issue that we made a sort of structural change in the concept to allow for it. We instructed, not to get into too much detail of the coding system, but for instance if you had some new concept in surgery that there was not a good term, we believed, for it, we would instruct them that the NOS for that is now the term repair. We went through every digit and said, given that you cannot find a choice, here is what you do. And we have a whole paper for that that we made available that said here is how we are including this NOS concept in the coding system, and we did wait until the very end to add it.
DR. STARFIELD: And Donna, what about NOS?
MS. PICKETT: Well, the NOS concept is part of the ICD as promulgated by WHO. So the concept is there. But again, in terms of understanding why it is there, it is because many of the countries that are using ICD are doing so in various ways, and they sometimes need to have a way of saying, well, we know it is hypertension but we just do not know whether it is benign or malignant.
Also, when you look at some of the hospital records, sometimes you still do not know, and you probably should know, but you need to have a default so that you are not inappropriately assigning a default that leads you to a condition that the patient may not have.
DR. STARFIELD: That is the uncertainty issue, isn't it?
MS. PICKETT: That is the uncertainty. I mean, you may know that the patient has hypertension, but whether it is benign or malignant, you may not know that at that point in time. So you always have it unspecified until such time that either you have a more definitive diagnosis or the documentation improves so that someone coding the record would have the information available to assign a more detailed code.
Also, some of the surveys that NCHS did, they are not working from actual records. They are working from abstracts. So you need to still have those defaults available so that, again, you are not trying to force-fit a code to something where you just do not have the documentation available to you.
DR. STARFIELD: Okay, and the other two questions are the testing plans for the diagnosis - are you going to limit it to hospitals? Are you going to go beyond that?
MS. PICKETT: We were not limiting it to hospitals. We were looking at hospitals, ambulatory care setting, managed care if we can find a group willing to test the records in a managed care setting, but also physician offices, because I know that there is some concern that has been expressed that by going to five or six digits that it may be a burden to someone in a physician's office that they may not have the detail to code a record, and quite frankly, we are not clear on how that might be unless the record itself is not well-documented. So we do have a concern that, you know, that they would be able to encode with it, as well.
DR. STARFIELD: Okay, and then the imbedded meanings, that was the third question. Give an example of imbedded meanings. Pat, I think this was yours, imbedded meanings.
MS. BROOKS: Oh, about the code number itself. Boy, I should probably ask Simon to do this, because he is a big proponent of this.
DR. COHN: Of not having this.
[Laughter.]
MS. BROOKS: Of not having it. Right, I am so sorry.
Right now, when you read a code number, many coders know kind of what that means. They can look at it and think, well, that is in the digestive part of the procedure system or that is in the back part. So it is probably ancillary procedures. They can look at it and get some sense of what it means, and something the .8s and .9s mean something.
Many people believe that is a problem, because when you go to expand or modify your coding system, then you have to stick something in another area, and then you have kind of thrown everything out of whack, and you are looking at it and you are changing meanings, and they say wouldn't it be simpler if all the numbers were maybe initially random generated or whatever, had no imbedded meaning, and then if you wanted to take one down because it is not done anymore and you want to subdivide it, you would generate the next number in the series for it, and it would not be disruptive to the whole hierarchy of the system. That is the debate.
It is interesting to see how strongly people feel. They either have one strong feeling or the other. There are not too many people on the fence.
DR. DETMER: Jeff, if you don't mind - Simon, you wanted to speak to this point?
DR. COHN: Yes, I just wanted to make a further comment on this. I think this is actually a very interesting issue, and I was on the advisory panel for all of this. When you have to make everything have imbedded meaning, it causes you to construct a terminology strangely in some cases, because you are dealing with 26-plus B was it 34 possible characters in an area? And so you may wind up, rather than talking about the whole body, you may have to divide it up based on whatever you listed, 34. So it causes - I am trying to think of an example in ICD-10-PCS where - I think it was vascular system, wasn't it, where it had to be divided into -
MS. BROOKS: Part of the vessels, yes -
DR. COHN: So you divided it sort of arbitrarily into subdivisions because of the limitations of the meaningful identifier issue. Anyway, it is an interesting issue. I think we all believe that there are actually ways of doing it both ways so everybody gets a meaningful identifier and has a background number in the background that can be modified. But you are right. It probably is a training issue. That is my comment on that one.
DR. DETMER: Jeff, and then Clem.
MR. BLAIR: You all mentioned that one of the groups that had submitted an appeal to be included or accommodated in some form was the alternative codes from alternate links, and you indicated that there apparently was some problem with that because of the lack of experience in using it in the field at this stage. What do you see as what is likely to happen with that?
MS. BROOKS: Well, we have not made any final decisions on any of this, because we have all the comments in, and it would be extremely premature for us to say. So we will be reviewing all those comments and making decisions about which ones remain in the final standards and which ones are not.
Right now, Donna and I have just been busy sorting out all of these papers. You would be amazed at the mess we got as far as electronic comments. Sometimes we would get four or five of them and formatted different, and then we would get a paper copy, and just identifying which ones were duplicate has been a monumental task. So we just about have that under control now in identifying what the issues are. But we have not made any decisions.
DR. DETMER: Clem?
DR. MCDONALD: The question about imbedding the hierarchy in the code or not, people are not arguing to not have a hierarchy. It is just if you have multiple ones, it is easier to have it somewhere else. So the assumption has been in many of our minds that people are not going to really use the codes. You can use coding programs and you put words in there and they will figure out the codes.
That was not the assumption when I was at one of the subcommittee meetings, though. They are talking about lots of hospitals have no computers, and at $900 a computer and even a 30-bed hospital is a $3 million a year business - I had trouble believing that. But is that still believed, that they are just using the manual method strictly in a lot of places?
MS. BROOKS: You know, it has been interesting, on that issue and many other issues, how it is good it has taken so long, because attitudes have had a significant change we have seen, and the issues that drove people crazy early on do not seem to anymore, and I think it is just like what you are saying. They recognize the world is changing, and the computer applications are going to be there, and their concerns and issues have changed over time. Now I think it is interesting: they are less concerned about tell me about the system as show me. 3M, who makes a lot of lectures, they only want them now to come out and bring records and bring parts of the book and teach them how to code. They are ready to get to work instead of arguing whether it should be this way or that way. That is an interesting change in the attitudes we have seen in the last few years.
DR. DETMER: Richard?
DR. HARDING: Just a quick question. Do either of you want to do a guess about an implementation date? The year 2000 was mentioned here.
MS. BROOKS: I would say you can guarantee it will not be the year 2000.
[Laughter.]
DR. HARDING: I accept that, with one year to go, but is it 2005? I mean, is that what we are talking about, or is it somewhere in between there, or earlier?
MS. BROOKS: I would hope it would be between there, but a lot of the issues depend on how long it takes us to clear and publish the initial standard with the current coding system, and then you have to go out with the next one and propose something and see what the public is willing to do. I think people would be very resentful if Donna and I were to propose that the system that she is finalizing now and I am finalizing that has not been tested - they do not want to even discuss a year for it until they know what it is and what it is like.
At that point, I think by next summer we should be in a position that we will be discussing at these public meetings how do you feel and what is the lead time, and we can get a sense of the industry what they feel. Now they may be ready to move quicker than the government will be for these very issues that Lisa has identified. If they are ready early but it takes so many years to reprogram, to redo the GRUPR[?], then you might have to add on a few years. It will not be a short process. It may be an announcement and then a long implementation time.
DR. DETMER: Jim, then Kathy, then Simon.
MR. SCANLON: I know you have told us this before, Donna and Pat, but you can remind us again of the mortality coding and the adoption of iICD-10? What was the time table?
MS. PICKETT: ICD-10 for mortality will become effective January 1, 1999, for deaths occurring in 1999.
DR. DETMER: Simon?
DR. COHN: Actually, Pat, it was a question I had regarding the documentation that you provided around ICD-10-PCS, and it was just really a question about the nature of the coding system. As I looked at what the objectives of the ICD-10-PCS project were, I noticed early on that multiaxial was a term used to describe one of the objectives, and indeed, ICD-10-PCS is a multiaxial system. So it has fulfilled that.
In recent documentation, both training and other, that has been replaced by something called hierarchically structured. Perhaps I get sort of simplistic in my views on this, but I tend to think of hierarchy as a hand is part of an arm is part of the body and so on, and I for the life of me could not quite figure out how ICD-10-PCS was really hierarchically structured as opposed to multiaxial. Can you comment? Has it gone through a modification that I was not aware of?
MS. BROOKS: No, it has not, and maybe the semantics are confusing. I think people also had trouble with the multiaxial and explaining what that meant. What we were trying to say is that the structure is, as you know, depending on which digit it is, where it came from, and then building under that. If there is a better way to explain that, or maybe we should move to phase III, that would be good, too, for our next iteration of the paper.
DR. DETMER: Kathy?
MS. COLTIN: This is a question for Donna. Could you explain what has happened with the ICD-9-CM V-codes in terms of translation to ICD-10? A number of them actually are procedure-like codes, and I noticed that you are deactivating procedure codes. I am wondering if some of them are going to become orphans where, you know, they may or may not be picked up in CPT-5 or the next version and whether there is any coordination between those kinds of development efforts, whether anything that you are cutting out is being brought to the attention of those that are developing other systems that might need to pick it up.
MS. PICKETT: Well, certainly in the work that we are doing in the development of 10-CM we are coordinating with HCFA in the development of 10-PCS. There has probably been less collaboration with the AMA, who is developing CPT-5, but certainly we could start to work with them in terms of identifying some of the concepts that we believe should be deactivated from 10-CM and better handled in a procedure coding system.
Again, we have not gone through all of the 1,243 comments line by line at this point, but I do recall that there was some concern expressed about the deactivation of some of those codes and whether or not there was not a way to accommodate some of those concepts in the absence of a procedure code that would describe it. So we will be revisiting that issue as we start to go through the comments.
MS. COLTIN: It seemed that a lot of them actually pertained more to the ambulatory setting, and therefore PCS might not be the right coding system, you know, to work on incorporating them: things like family planning, for instance. But I know that with the AMA revising their codes, that may be an opportunity, and I would encourage that kind of collaboration to develop.
MS. PICKETT: Well, NCHS does have someone from our staff who is actually on one of the working groups of the CPT-5 overarching structure. So we will be able to provide information to them about that.
MS. COLTIN: Okay, and also the other question is how are you handling the external cause of injury?
MS. PICKETT: The external cause of injury codes are still there. They are chapter 20. They are very much like the external cause codes that you are familiar with in 9-CM. There are a few that have been expanded by WHO, but there is a chapter for external causes.
MS. COLTIN: Thank you.
DR. DETMER: Lisa?
DR. IEZZONI: Kathy led into this, and I feel like I would be remiss if we did not talk about the single procedure classification kind of viewpoint that the committee has advocated in the past. Have you talked about the fact that some hospitals use ICD-9-CM to code both inpatient and outpatient procedures? That is not universally true. Obviously there is difficulty crosswalking between CPT and ICD-9-CM procedure classification, and it sounds like the ICD-10-PCS. So again, under the spirit of HIPAA, where we are trying to simplify and standardize, I still am slightly perplexed about this multiplicity of procedure classification systems. This is not necessarily a question for you; it is just more a comment of something that I still feel a little confused about, especially since settings of care for certain types of services are shifting all over the place and deciding what should be coded as a hospital type of code versus an outpatient type of code is really becoming pretty murky.
MS. BROOKS: I think where we probably will have to come with grips with that issue - we got a little bit of discussion; I have not read them all, but we got a little bit of discussion in the comments on the current draft - but if we were to propose a new procedure coding system of any of these, I think that is when the issue would raise itself more, and I think we would be forced to come to grips with it. So in the future, I guess we will be forced to deal with it.
People did not want to push it too hard, though, in the early comments.
DR. DETMER: Donna and Patricia, any final comments you would like to make to us? We really appreciate your coming, and we are also delighted you are into this, because you are very informed and I think you are tackling an important issue.
Thanks very much, and we will be interested in obviously staying in touch.
MS. BROOKS: Thank you.
DR. DETMER: Okay, what I would like to do is now ask Mary Jo Deering - let's take a 10-minute break, and then we will - but don't take more than that, please.
[Brief recess.]
DR. DETMER: I first want to introduce Mary Jo Deering, who is with us this morning, and I do not know what happened to Susan Kanaan. Oh, there you are. How about coming on up, if you would, and sit there.
In introducing this, Mary Jo is helping the HII group and has been very useful in helping us with this latest draft, and I appreciate that.
In any event, what we are dealing with here is Tab E. Let me just review a little bit of where we have been and where we are, I think, headed on this. What we have been working on is a statement that would be essentially a concept paper on the national information infrastructure. The Data Council, it turns out, is very interested in our interest in this, and might well have asked us to do something along this line if we had not already started such a thing.
The objective I think we have before us today is to not probably spend a real long time continuing to wordsmith this, unless we decided that we just did not like it, period, but to try to get on the table final kinds of editing comments that we think are still needed, if you are comfortable with this, and then get it onto the Data Council so that we can now start hearing from them on what more specific pieces within this they would have us actually start working on. At least that is my sense from the Data Council.
Jim, do you think I have reflected that?
MR. SCANLON: That is right, Don. At the September meeting of the council, there was some discussion of planning the next few agenda items, and this was left as a possibility whether an October or November paper would be available.
DR. DETMER: So I hope that you would feel comfortable acting on this today. On the other hand, if you are not, that is fine. But I would like to at least open it at this point and see where we go, and I think, Vince, that you had something you wanted to speak to, and I believe - yes, okay. Go ahead.
DR. MOR: Well, I have a series of points. I am sure other people do, as well.
First, I very much like the premise, but it is probably not adequately emphasized, that a health information system beginning with the clinical encounter and clinical utility of that information is a backbone, and I do not think that is adequately specified. I actually have some questions on the crosswalk or the use of certain kinds of, I suppose, computerized medical records, in terms of their utility for creating population-based statistics or event kinds of data, but I think, at least from our experience in the world of long-term care, where we have actually tried to do some of this in the nursing home context, is that it only will be done if the data are useful to the people extracting it and making use of it in the information context. Because otherwise it is going to be done from reimbursement or some other kind of administrative function and will have limited, I suppose, validity, clinical validity. I think that is a very important premise, and I would emphasize it.
DR. DETMER: Where would you add that?
DR. MOR: My recollection was that the language was literally on the first page. I am trying to remember exactly where. I do not see exactly where now, but I believe it is in the third paragraph on the first page.
DR. DETMER: Well, make your other points, and then I can come back to you for some of this.
DR. MOR: Okay, another point is on page 3, the whole issue of - in the middle paragraph there is the concern about the burdens of investing in automation, including training, time, cost will be prohibited by certain health care providers, and the whole notion is that the rich get richer if you are instituting new technologies. So you have this problem of the rural providers, the orphan providers, the rural providers, the same thing we have in all kinds of unregulated or deregulated components of industry.
The question is how strongly we want to emphasize governmental versus other societal responsibility for this function, or to make it more explicit that this has happened before and in certain other sectors, we allow people to go broke, but in this sector, we do not want to allow people to go broke because of certain reasoning. I think it is important to say that explicitly, because otherwise it just sort of sounds like, yes, the government should step in and do this because of all these poor people. Well, there are a lot of not-poor people out there who are going to do quite well at this, and you imply here with the last sentence that this can be done in such a manner that aggregate costs remain neutral, which is in some sense an internal cross-subsidy. It is an inference, and I would suggest that you might want to make it a little more explicit.
DR. DETMER: Okay, another point. Vince has a number of items, and then Elizabeth and then Jeff.
DR. MOR: On page 4, you have this section called computer-based records where you have these three levels of CHRs. I think it would be very useful here to have a graphic, some kind of figure showing this nesting, because it is a key concept here. It makes explicit the entire paradigm that is imbedded in this paragraph.
DR. DETMER: Okay, others? Is that it?
DR. MOR: That is it.
DR. DETMER: Okay, on balance, with those exceptions, do you think it is worth moving forward with?
DR. MOR: Yes, I mean, there are a couple of other comments. For example, on the top of page 7, the whole issue of people having access to their own information raised for me another rationale, not just clinical importance or reducing clinical error, of having a unique patient identifier. That is, people can get at their own stuff if it is up there, and they can check it themselves.
DR. DETMER: Maybe we should pass on that one for the moment.
[Laughter.]
DR. MOR: Yes, I thought I was asking for it.
DR. DETMER: But I did tempt you to keep speaking.
Elizabeth?
MS. WARD: I have one on page 5, at the bottom. It says enabling objectives, but in fact, the sentence then that follows it talks about crosscutting processes, and I could not find what I would call an objective, and I would just relabel that enabling something. I do not think they are objectives, actually. I think they may be enabling crosscutting processes, which is at least the label you use next.
So from a strategic planning point of view, I could not find an objective.
DR. DETMER: Check. Well, we like to be objective. That is good. Any others?
MS. WARD: No, that is it.
DR. DETMER: Jeff?
MR. BLAIR: I kind of reacted to that same paragraph that Vince did, which was the benefits and risks, and especially that phrase - I think it ended aggregate costs become neutral. I do not have it memorized there. Okay, and maybe what I was looking for as I started to read through there is that the benefits would exceed the risks, and when I wound up seeing that phrase, I mean, even though it might be technically correct within the context of the way it was making the comparisons, I just felt as if we were missing an opportunity to point out that the benefits would exceed the costs, as well as the risks.
DR. DETMER: How do the rest of you feel? I mean, I think that is an assertion. You know, it is one that we may feel comfortable saying, but I think that is an assertion.
DR. MOR: I do not think we have any evidence for the statement being cost-neutral, cost-plus, cost savings, or benefit-neutral, benefit-plus, benefit savings. I do not know that - conceptually, I actually agree. There should be far more benefits than costs over time. It is a phase-in issue. But I do not know that we have any evidence.
DR. DETMER: Well, maybe the two of you or whoever else is interested might try to wordsmith a little language that we could take for that.
Simon, and then John.
DR. COHN: I was just going to comment that there was actually a workgroup that was convened by the American Hospital Association back in 1991 that worked along as a separate group at the same time that WEDI[?] was being formed that actually took a look at this whole issue of the costs and the benefits and the disproportionate issues, recognizing that while we have a vision of some of the stuff being very helpful and cost savings - we know that, for example, insurance companies and others save tremendous amounts of money when things get computerized, whereas we know that providers generally have to make huge investments in hardware, software, and otherwise. So I think this really does bring up the point - I think there is a reference that would be easy to add to this that further defines it.
DR. DETMER: All right, if you could work on that for us, I think that would be great.
DR. COHN: I would be happy to refer you to that.
DR. LUMPKIN: My only caution would be to be careful that it does not appear that we are over-promising, because legislators and other folks always hear that costs are going to be negligible and, you know, the benefits are so wonderful. I think we need to have a more reasoned approach if we are going to be believed, and it is just how we phrase it, not to disagree with the probable statement.
DR. DETMER: All right. Barbara?
DR. STARFIELD: I think this is a really excellent document. I have only one really pretty minor thing, but it is related to Vince Mor's first point, and that is, for example, on page 2, in that middle paragraph, we list what the uses would be, that we put in generating knowledge for clinical and public health purposes, that we put that specifically in there.
DR. DETMER: Okay. Where actually is that?
DR. STARFIELD: Well, there is a whole list of things there. Favorably and dramatically impact on access, quality, and cost of care, et cetera, et cetera. Just put that generation of knowledge for clinical and public health purposes.
DR. DETMER: All right. Others?
Stewart?
MR. STREIMER: I, too, think it is an excellent document, by the way. As I read through it, it comes to mind that the committee and the subcommittees are working on a number of issues that are very closely related to what is being presented here, and I am not sure that comes out very clearly, and I would suggest maybe on page 8, where we talk about what the committee's role might be, rather than it being a reactive role solely, I think maybe something to the effect of let the Data Council know that the committee is working on a number of the issues associated here so that they are not starting from scratch in maybe some cases.
MS. GREENBERG: It is my recall that - I mean, there have been a number of versions of this - that we had that in one version, and I wondered why it came out. Was there, Susan - I mean, you are the historian here; do you remember?
MS. KANAAN: I do not. I am sorry. I can go back and see if we have -
MS. GREENBERG: Well, no, I just thought it was a -
DR. DETMER: I do not think there is a real reason. In fact, I think we can maybe find that language and see something - because I think it is something that is accurate, too. I think that is what we are doing.
MS. GREENBERG: And, you know, I think we also some of the language about public health data, and then the next iteration of this came after the hearings in July and the concern, again, about whether there was this plan to develop a large database, and I think that came out. So I just think we need to do why things have come and where they have gone and where we would like them to end up, but I know there was some language about that before that I think maybe we need.
DR. DETMER: Paul?
DR. NEWACHECK: I think this is a very good paper, too. I think it does a really good job of raising some of the opportunities and potential problems, too, as we move forward.
One of the issues that is brought up that I am very interested in is on page 3, the first full paragraph there, about the potential risks of moving into the greater dependence on information technology and that some people in our society do not have good access to those technologies, and a number of studies or surveys have demonstrated that, and I would like to see a little stronger statement here or recommendation here on the part of the committee to the administration for recommending that efforts be undertaken to improve access to technologies and communications, vehicles for all Americans. I think it is in here implicitly, but I would like to see it just be a little more explicit.
DR. DETMER: Okay, access to health information for all Americans.
DR. NEWACHECK: Yes. Well, to the technologies that would permit them to have access to that information.
DR. DETMER: All right. Others?
Did you have another comment, Vince?
DR. MOR: Yes, on page 5, there is a paragraph that begins Second, the virtual explosion of web-based systems. It basically raises the question of there is not only a lot of information; there is a lot misinformation. And it sort of comes close to, well, this might benefit, or consumers might benefit from some quote unquote Good Housekeeping seal of approval, but it does not. So as it is now, it does not say sort of neither here nor there. It just says, oh, there is a lot of this misinformation out of there, but on the other hand, there might be some ways to streamline it without saying anything more explicit.
Is that an issue that we would want to make a statement about at some point? Maybe this best evidence criteria for accuracy and reliability - it sort of says, well, you know, is the government going to get into the business of saying this is good information and this is -
DR. DETMER: Well, one could argue that report studies have done that, in selected areas.
Michael?
DR. FITZMAURICE: I guess that the Vice President sent a letter over to the department - when was it? In 1995, February 6, 1995. One of the things he called for was addressing enhanced consumer health information, and there was a proposal to develop a seal of approval for the best health information that came out of the department, and that did not go anywhere.
[Laughter.]
But I think what would be important is to have developed - I have been on several committees that have tried to develop a criteria that consumers should look at when they went to evaluate for themselves what good health information is. So I would not want to put a seal, but I would want to say here is a set of six questions or ten questions you should ask about the Web site, things like is there a proprietary interest, you know where the evidence comes from, things like that.
DR. MOR: This is sort of like labeling, or Agriculture Department labeling for information?
DR. FITZMAURICE: Even less than that. It is saying, putting up somewhere, here is a label you might want to fill in the blanks, or whenever you are thinking about acting on -
DR. DETMER: Well, there is already one effort out there, actually. Mary Jo?
MS. DEERING: Actually, there are a couple. One of the direct outcomes of the Vice President's letter was Health Finder, and that is the way the government does screen the health information that is out there. It is not just the best of the federal information, but it is also the best of the academic and professional and even some of the commercial sites that are in partnerships with reputable institutions. So what we created was an actual entity and a place that people could go, and the selection criteria that are in Health Finder address exactly that, and they are on the Web, and in fact, Health Finder even has a separate section.
DR. DETMER: We ought to maybe reference that and support it. Yes, we could reference it and support that addition.
MS. DEERING: The Department also has the Science Panel which has been convened to look at interactive communications in health, and they will have an article in the October 14, I believe, issue of JAMA that presents their findings about evaluating interactive applications. So really the Department has taken some nice steps toward there, without necessarily wanting to say this is the HHS seal of approval.
DR. DETMER: Well, that is good. We could reference that article, as well, then, to speak to that.
It sounded for a moment that it was all just positive thinking, and I was thinking of the Norman Vincent seal or something, but at any rate, it looks like we are making progress.
All right, other questions or comments?
[No response.]
Well, it seems to me that if the committee is comfortable, we maybe could entertain a motion to make these additions. I think the question is whether you want it to come back to you for another review or if you are comfortable with us making those changes and then moving it on to the Data Council. You know, I think that is really where we are, at least as I hear things. So, what is your pleasure?
MR. BLAIR: I move that we accept the recommended changes and move it on to the Data Council.
DR. LUMPKIN: Second.
DR. DETMER: All right. Any discussion?
[No response.]
DR. DETMER: All in favor, say aye.
[Ayes.]
DR. DETMER: Opposed?
[No response.]
DR. DETMER: Abstentions?
[No response.]
DR. DETMER: Okay, it looks like it passed unanimously.
Thank you.
DR. MOR: I have a question. When would this become a document that we might be able to distribute, because this is really a nice piece.
DR. DETMER: I am glad to hear you say that. Well, we will get on it, and in fact, we need some of your smithing on those paragraphs, but I think really I do not see that there is any real reason that it should not be very soon, and obviously, like our other documents, we will all end up having it on our Web site. So I guess it is just a matter of we can let you know by email, or you can keep looking at the Web site.
How long do you think it should take us? It should not take too long, should it?
MS. DEERING: Within days, a matter of a few working days of getting the language.
DR. DETMER: And then I have been waiting, obviously, for this to happen, because we have not really activated the working group yet, because we did not really have the document to go with. So at this point now we will, and then I will be interacting with the Data Council, and then we will be activating the workgroup to start really seeing what next steps we will take. So that is basically sort of the order of business, as I see it.
DR. NEWACHECK: If we have specific comments or suggestions for wording -
DR. DETMER: Please. Yes, I would definitely like that, even literally where you think it would fit, and Elizabeth, as well.
DR. NEWACHECK: When do you need that by?
DR. DETMER: Just literally as - if you could get them to us today, it would be very much appreciated.
MS. DEERING: The faster you get them to us, the more quickly you will see them.
DR. DETMER: Okay, that was great. We are a little ahead, which is wonderful, and so what I would like to do is start on the reports from subcommittees and workgroups, and part of the reason I would like to do that is we do have some letters that we are also sending out. So I do not know which of the subcommittees and workgroups would want to volunteer to go first.
I see Lisa looking at me. Are you happy to do that? Wonderful.
DR. IEZZONI: Why don't we start, however, making sure that everybody has a copy of this letter, because this will be an action item. It should have been - Jackie was distributing it this morning. Why don't I talk, and while I am talking, people can read this letter that Paul Newacheck and Barbara Starfield suggested.
DR. LUMPKIN: Just a procedure - since we are also on the Internet and people out there do not have it and it is short, could someone maybe read the letter?
DR. IEZZONI: What I thought I would do is give my subcommittee report while people are reading this and then turn to Paul to walk us through this, through the letter.
DR. DETMER: Okay, and then Paul can read the letter.
DR. IEZZONI: Right, and then at that point, Paul can read the letter. That was my plan.
Our subcommittee is the Subcommittee on Populations. We have some initiatives that are really at the point where we are preparing reports and hopefully recommendations to the Secretary. Those two initiatives are the Medicaid Managed Care Initiative - we heard yesterday from our subcontractors at George Washington University, Sarah Rosenbaum and her colleague Anne Markus, who have been looking at state managed care contracts and the language in them about information requirements and then actually conducting a survey of 11 states to talk to them about what information they actually gather and how they use that. It looks like that work is going to be very, very influential in helping us think about recommendations and gaps of information, and I think that as soon as these reports are finished, they will be submitted to the whole committee for people to review.
The other initiative is the Islands and Territories Initiative. We had an amazing meeting on July 14 and 15 that was just truly remarkable, for those of you who were not able to come to it. We not only had people who flew in 36 hours straight from the Pacific Islands and ancillary territories, but we also had people from the Virgin Islands and Puerto Rico, and it was a wonderful two days of sharing information, learning about them, learning what their needs might be, and coming up with some ideas about how we might help raise the visibility of some of the data issues around those particular areas.
So hopefully staff, Jim, will be able to work soon on looking at the transcripts of those meetings and coming up with a draft report that the subcommittee can look at in preparing its recommendations.
MR. SCANLON: Joan Trezina[?] from our office is working on this issue, and she is looking at the transcripts, from what I understand, and I think she will probably develop an outline for you to look at.
DR. IEZZONI: Good. Hopefully, we would really like to move on that quickly. We felt a strong bond kind of with these people who came in, and we want to make sure that we are responsive to them. So, therefore, timeliness is going to be a very critical thing.
On the staffing issue, we would just like to raise the point that the Workgroup on Quality is not necessarily completely imbedded within our subcommittee, but it largely is, and we are concerned that the AHCPR person who had been appointed as staff to that work has since left the agency, and we need to make sure that a new staff person is appointed as soon as possible.
MR. SCANLON: We are already working on that.
DR. FITZMAURICE: I have been assured that we will. I will not mention Stan Meninger's[?] name right now, but I think Greg Maris[?] has a strong interest in it.
DR. IEZZONI: Okay, great, Kathy. So it looks like we are going to get a staff person for your initiative soon.
Tomorrow, we will be looking at the survey integration conducted within the department, and we will hopefully be able to report back to the full committee in November what we have learned from doing that.
So with that as the kind of overview about what our subcommittee has been doing, we will be meeting again tomorrow, and in the afternoon we will come up with plans for the next year, but as we do our work over the year, we will continue to track issues that are pertinent to the populations that we feel we represent, and one of them has to do with kids and specifically the new implementation of the state Children's Health Insurance Program, and Paul Newacheck and Barbara Starfield drafted a letter that we would like to see if the full committee would be willing to send to the Secretary.
Paul, could I ask you and Barbara to talk us through this?
DR. DETMER: Paul, before you start, in fact, see if there are questions actually for Lisa about the general committee work and the work under way. Are there questions or comments?
I have one. What is the agenda for tomorrow morning going to focus on?
DR. IEZZONI: It is going to be survey integration. We have a lot of folks coming in from all over the place literally to talk to us about surveys.
DR. DETMER: Okay, good.
Paul?
DR. NEWACHECK: This is a letter that was originally drafted by Barbara Starfield and myself for consideration by the Subcommittee on Populations, and we discussed this at our subcommittee meeting yesterday afternoon, made some changes to it, and the copy that you have reflects those changes, and we would like the full committee to consider it, and then, if approved, it would go out under Dr. Detmer's signature to the Secretary.
Should I go ahead and read it at this point?
So the letter is addressed to Donna Shalala.
It says, Dear Secretary Shalala, the State Children's Health Insurance Program, or SCHIP for short, authorized by the Balanced Budget Act of 1997, provides an unprecedented opportunity to expand health insurance coverage to many of the nation's 10 million uninsured children. To date, almost all states have indicated they plan to participate in this optional program. Consequently, SCHIP may bring about profound changes in the manner in which previously uninsured children from low income families obtain and receive health care.
As enacted, Congress gave states substantial discretion in designing and implementing their SCHIP plans. States choosing to participate can cover all or part of the target population of low income uninsured children. States may provide coverage through expansions of their existing Medicaid programs, a separate children's health insurance plan, or a combination of both. Although states must meet certain minimum standards, they have substantial discretion in establishing the scope of benefits to be offered in their plans. Within certain limits, states that choose to offer a separate children's health insurance plan can impose premiums, deductibles, coinsurance, or other co-payments on enrollees.
The wide latitude granted to states was intended to permit them to tailor the new program to meet unique local needs. The resulting mix of state level programs now being designed and implemented provides an unusual opportunity for assessing the effectiveness for divergent approaches to insuring and delivering health care to children.
Monitoring and evaluating SCHIP requires data that systematically addresses concerns about access, quality, and outcomes of care. Timely and reliable data are needed to support the administration and operation of the new program at the federal and state levels, to measure the performance of states, and to gauge effective mechanisms for serving uninsured children. To achieve this objective, baseline and post-implementation information is needed on enrollment levels, access to appropriate care, utilization of services, satisfaction with care, expenditures, and health outcomes. Information retrieval should be coordinated so that data collected at the state level on each of these domains can be aggregated to permit comparisons that will enable health planners to distinguish the more successful models for delivery of care from those that are less successful in meeting the objectives of SCHIP.
Assembling the data needed for monitoring and evaluation presents a formidable challenge. Fortunately, the United States posses a system for collecting and disseminating health information that is the envy of most developed countries. Existing population surveys, such as the National Health Interview Survey and the Medical Expenditure Panel Survey, can provide much relevant information at the national level on many of the important evaluative domains. However, none of our major current national surveys or other population-based data collection efforts can provide the needed information to evaluate the performance of SCHIP programs at the state level. The production of useful monitoring and evaluation data at the state level will require augmentation of existing surveys or creation of new data collection mechanisms.
Recommendation. As a cost-effective approach to providing needed data at the state level, the National Committee on Vital and Health Statistics strongly endorses an appropriate adaptation and use of the State and Local Area Integrated Telephone Survey, or SLAITS for short, developed by the National Center for Health Statistics. This population-based survey approach, which was originally designed for immunization surveillance and now has been pilot tested for other purposes, could readily be extended to collection of critical performance data on the new SCHIP initiative. The use of an existing survey, rather than the development of a costly new data collection mechanism with a single focus, is entirely consistent with the Department's survey integration plan. A prototype questionnaire suitable for collecting data on SCHIP has already been designed by NCHS and could be fielded across the states with little additional lead time. However, there are currently no sources of funding identified for this purpose. The cost of a 50-state survey meeting minimum reliability and precision standards is tiny in comparison to the near $40 billion set aside at the federal level for SCHIP matching funds over the next 10 years. Implementing this survey would provide the Department with a comprehensive data collection mechanism for assuring accountability under the new program while providing states with information needed for program planning and administration. Specific issues concerning implementation of this survey need to be addressed, and the NCVHS is ready to assist in this process.
Sincerely - and then it would be signed by Don Detmer.
DR. DETMER: All right, let's open this.
Barbara, do you have any other comments you would like to make before we open it up?
Okay, it seems to me an excellent letter. I will open it for discussion.
Kathleen, and then Daniel.
MS. FYFFE: As a federal advisory committee, is it part of our scope to talk about funding?
DR. DETMER: Sure.
MS. FYFFE: It is? Okay.
DR. DETMER: We just cannot appropriate it.
[Laughter.]
MS. FYFFE: Is the intent that this would go to the Secretary so that she can put her budget analysts with a sharp pencil and say let's find some money for this, by shifting money around or by getting new money appropriated, or do we not even -
DR. DETMER: Well, it would go to the Data Council, and then it would give a little stronger hand, candidly, to the people that would want to see this supported. Now where the funds end up coming out of, that is another issue.
MS. FYFFE: Okay, and we are not really concerned with that?
DR. DETMER: Well, not officially. I mean, it is sort of out of our hands at that point.
Daniel, and then John.
DR. FRIEDMAN: I think it is an excellent idea. I think it is an excellent idea. Let me start with that.
My knowledge of SLAITS is around 12 to 18 months obsolescent, or at least around 12 to 18 months old, and I do have a concern, and I hate sounding like or feeling like a shill, a snitch, but having said that, I am going to go ahead and do it. The concern essentially has to do with the last sentence about the issues regarding implementation of SLAITS, because it is really essential for this to work both from the national evaluation perspective as well as from an individual state evaluation perspective.
Having said that, I think that one vehicle for doing that is ensuring that there is real collaboration on state-added questions, which had been an issue at least 18 months ago around SLAITS, and direct access to the data, which had also been an issue, as well as - and I hate to harp back to the financial issue again, but SLAITS is cheap compared to some survey mechanisms and it is not cheap compared to others, and for it to be really useful at the state level, we are going to need pretty substantial sample sizes for each state, and it would be helpful to at least raise the issue of perhaps more directly, or where that funding is going to be coming from.
DR. STARFIELD: I think that we have similar concerns, and that is why we put in the words appropriate adaptation and things like that, because it certainly is not over, but it is a mechanism, a good way to start, and I think adding the language that you recommend is probably a good idea to strengthen the fact that it should be useful for the state. Well, we say it should be useful for the states, but maybe we could strengthen that. We can work with you on that.
DR. NEWACHECK: Yes, I do not think it would be really worth going forward with unless it had the national utility as well as state utility, and clearly adding some questions for each state that would be distinct from the common core set for the nation would be important.
DR. STARFIELD: Let me just say one more thing about this. One of the things about implementation is where this is going to be mounted, and the sampling has to be augmented so that you get the kids you want to get. I mean, there are going to be a couple million kids that are eligible for this program to begin with. So when you do a survey you want to survey those areas that have high concentrations of those kids, and that is one of the implementation issues we were addressing.
DR. DETMER: John, and Vincent.
DR. LUMPKIN: Two concerns. Let me first start off by saying I think that this is a very good idea. I am very supportive of it. I think that even though we are talking about funding, at least from our state discussions on the amount of money that has been allocated for the SCHIP program, there is plenty of room in the federal allocation to the states for some of that money to be sequestered, I think, from what I have been hearing from most states, between the expenditures over, I think, 4 or 5 years, and the money that is allocated. So I think there is room.
MS. FYFFE: Do you mean room from the federal funds or from the state funds or from both?
DR. LUMPKIN: Yes.
MS. FYFFE: Okay.
DR. LUMPKIN: Somewhere in there, I think that Congress allocated adequate funds to do what they intended to do and this, too.
MS. FYFFE: Okay. Thanks.
DR. LUMPKIN: And so I think there are some innovative ways to do that, and we do not necessarily need to figure that out, but certainly through negotiation with the states.
My concern really goes along the way of Dan's, and that is that there needs to be some state utility to that, and that means that the data also needs to be not just state level but sub-state level. Not at the county level. I do not think there is necessarily utility, but, for instance, in Illinois, we would need to be able to look at the performance in Chicago collar counties, which are the suburban counties, and then the rest of the state. There needs to be some ability to disaggregate the data at least at sub-state levels. That would be my only addition, and we could just probably put a phrase in there somewhere, state and sub-state, and that would probably convey the appropriate meaning, and a phrase somewhere to beef up the state utility.
DR. DETMER: Vince?
DR. MOR: I think this is great, both in terms of what Dan and John were saying. They both imply additional emphasis on the state role, that this is not just a federal mandate. I also suggest that since, both from the state as well as from the federal perspective, it sounds as if the only data source for some evaluation would be the SLAITS, because that is the only thing we are talking about here. So you may want to add a sentence like, you know, these data, in conjunction with standardized program performance information, would form the basis for a broad-based evaluation. You know, it has utility for the states, or so on. But I think it is great.
DR. STARFIELD: The only other question that raises is there is no standardized program information, and there will not be.
DR. MOR: Right, but then you get to make that sort of suggestion.
DR. NEWACHECK: Well, there are certain requirements for reporting that is standardized in terms of numbers of enrollees and that sort of thing.
DR. MOR: And those come from the individual plans that are serving the populations, and so one of your key questions up here is, you know, are some kinds of plans doing a better job than other kinds of plans, and I think that is fine, as long as you can aggregate at that point.
MR. SCANLON: As background, there is a working group at HHS that is looking at monitoring and evaluation of plans for state CHIPs, and it is envisioned that there would be administrative data, financial reports and performance measures as well, plus an overall evaluation, plus the idea of monitoring through a survey. The precision requirements for - remember, CHIPs is a fairly small population, and it is generally viewed in the states as part of the Medicaid kids. So trying to detect changes in that specific B owing to that program specifically, require fairly high levels of sample sizes and screening to pick up that specifically.
The other thing is there may be other ways to do this. There are dual frame approaches that have a comparable approach. You may want to leave yourself some wiggle room for this or comparable survey population-based approaches in something like this. Again, if you think the states are really supportive - our folks say that there is not much in terms - at least this year and next year - in terms of a federal set-aside for evaluation. Unfortunately that was envisioned as part of CHIPs and it was not. That could always be sought.
If you think there is an interest in state cost-sharing, you may want to point that out, as well. But I would leave a little more wiggle room in terms of the survey approach.
Barbara?
DR. STARFIELD: Paul and I are aware of this interagency workgroup which is making fast progress, in any case. You know, I think we might have to step back from a 50-state approach and just maybe do a semi-voluntary good states - I think states that look like they would move fast and well and states that are not.
DR. NEWACHECK: I think our intent, though, is really just to make an argument for the importance of evaluation and data collection in this area, just to add our voice to that, not to be too specific in terms of the actual protocols and data collection mechanisms and that.
MR. SCANLON: The only other point I would make is the Department is trying to get away from very specific programmatic survey-type data collection, surveillance and other things. So you might want to emphasize the idea of a robust multipurpose mechanism for this, as well as other state data relating to health status and utilization and so on.
We would not necessarily want - you have to make this useful for a lot of purposes if you are going to invest that much in it.
DR. DETMER: I do not see there would be a problem with that.
Other questions or comments?
[No response.]
I think the question is do we want to move this with these changes that we have talked about, or again, do you want to come back, or do you trust us to make those changes and send this on to the Secretary? What is your pleasure?
MS. WARD: I would move that we send it on with the changes, that you would do it and then send it.
DR. LUMPKIN: Second.
DR. DETMER: Okay, moved and seconded.
Any further discussion?
[No response.]
Hearing none, all in favor, say aye.
[Ayes.]
DR. DETMER: Opposed?
[No response.]
DR. DETMER: Abstentions?
[No response.]
DR. DETMER: Looks like it is unanimously approved.
DR. NEWACHECK: Don, could I ask that if people have specific wording, like Vince, what you have, that you could give those to me and then I will integrate them? Barbara and I will integrate them.
DR. DETMER: Great.
MS. GREENBERG: Paul, will you take the lead - you and Barbara, I guess - on finalizing the letter then?
DR. NEWACHECK: Yes.
DR. DETMER: Okay, other comments?
Thank you very much, Lisa. Appreciate all the work.
Which subcommittee or workgroup wants to speak next?
MS. FYFFE: I will give you an update on the most recent activity of the Subcommittee on Privacy and Confidentiality. First, in terms of background, there are two very big problems in this country today that have to do with health care. One is the huge problem of health care fraud and abuse, and the General Accounting Office has estimated that perhaps as much as 10 percent of all annual health care expenditures in this country are lost to fraud and abuse. In rough terms, that means that if annually the country is spending, both public and private, a trillion dollars on health care, that approximately $100 billion is lost to fraud and abuse. This problem affects taxpayers, because you end up paying higher taxes for the Medicare and other public programs, and it also affects people who are consumers who have to pay for health insurance.
The other problem or challenge is keeping health information confidential, and with that in mind, we had a roundtable discussion yesterday on the issues surrounding the privacy or confidentiality of health information and medical records versus their use in health care fraud investigations. The persons who participated in that roundtable discussion represented both public and private payers. From the private sector, we had Bill Mahon, who is the executive director of the National Health Care Anti-Fraud Association. We also had two folks from the Department of Health and Human Services Office of Inspector General, Susan Callahan, an attorney, and Matt Kajinski[?], who is an investigator or an inspector. From the Department of Justice, we had Mr. Ian DeWaal, and from the National Association of Medicaid Fraud Control Units, Barbara Zellner[?] was here.
We had a very informative 2-hour roundtable discussion with those folks yesterday, and for those of you that were not able to be here when they were talking, I would recommend that you take a look at the transcript or the summary of the transcript that is going to be produced after that roundtable discussion. I expect that to be ready in about 2 weeks or so.
MS. GREENBERG: The transcript should be available in about 10 working days.
MS. FYFFE: Is that right? All right.
MS. GREENBERG: Then were you referring to the minutes as the summary?
MS. FYFFE: I do not quite know the mechanics of minutes and transcripts and summaries. Is the summary the same thing as the minutes?
MS. GREENBERG: Yes. Well, unless you were planning a separate document.
MS. FYFFE: I am not sure.
MS. GREENBERG: Well, minutes will be prepared, and then you might from that want to - such as the letter that was sent to the Secretary from the roundtables on identifiable data and registries; that resulted in a letter from the committee, but we will do minutes, as well as having the transcript. The minutes, though, will take longer than 2 weeks.
MS. FYFFE: Yes. Are there any questions?
DR. DETMER: Vincent, and then John.
DR. MOR: Kathleen, the roundtable did not include anybody on the privacy side, just the investigative side. So it was not a debate. It was just informing you.
MS. FYFFE: Right.
DR. MOR: And since you have been on both sides of those, listened to both sides, what is your sense of the key sort of debate issue between the privacy and the investigative?
MS. FYFFE: My sense is that there - well, there is concern on the part of the privacy advocates that there could be inappropriate access to medical records or individually identifiable health information during anti-fraud investigations, and although we have heard a whole lot through this committee process about the concerns of the privacy advocates, we have not heard anything from the other side explaining why the payers need to have access to individually identifiable health information, and, in particular, the laws that already provide them with that access.
As was pointed out in yesterday's roundtable, this is apparently the first time in 4 or 5 years that there has been such a discussion with people from the public and private payer community on why they need access to individually identifiable health records.
DR. DETMER: John and then Clem and then Marjorie.
DR. LUMPKIN: Well, I sat in on a good chunk of that panel yesterday. I found it to be a very interesting and informative discussion, and I would second the statement about reviewing that transcript, if you can. I think that there are some broader issues, though, that have not come up that we may - and I only say this with some hesitation because our plate is so full on everything else that we are trying to do - but the issue of fraud is kind of central to a lot of the things that we are doing, not only in privacy and confidentiality, but also related to administrative simplification.
Simon and I attended a conference that the AMA and HCFA put on on the E&M codes, and it became clear to me, at least in my perception, that when you start looking at these whole new methodologies and reporting requirements to place upon providers, that this was in a response to a widespread perception of people up-coding in order to get better reimbursements, maybe higher than would be substantiated by the medical record. The result has been to require more information to be reported.
The connection and the reason that I am concerned is I have not really gotten a feel that there is some scientific basis to assume that by getting this more information they are going to actually be able to detect more fraud and to be able to wipe it out. So if we are really concerned as a committee about simplifying the administrative process, I think we have to at some point address fraud and fraud detection and look at some methodologies and concepts of how we can do that in the least burdensome way, because that is the only way we are going to simplify.
This issue also came up under the claims attachments, where it becomes clear that somebody noted that somebody was billing for something or doing a procedure that did not seem to be appropriate, and the response was to now require that every time that billing code is used to submit the following claims attachment. Well, that overburdens the collection system.
So it really lends itself not only just to the privacy but other components of our task to seriously consider the issue of fraud, fraud detection, and the methodologies and systems and technology that is used to detect it.
DR. DETMER: I guess that would come in to a work plan that would probably cut across both groups, as far as I can tell, but I think it is an excellent point.
Who was next? I think Clem.
DR. MOR: The point is this also applies to issues related to quality, because there are whole issues about data auditing for quality purposes, particularly if you are doing those based on records.
DR. DETMER: I have kind of lost track of who had their - Clem I know did, and you too, Vince?
DR. MCDONALD: I kind of want to resonate John's comments. I mean, the word fraud has had a sort of meaning creep, I think, substantially. You know, we think about fraud as being this horrendous criminal act, and there certainly are things going on, documented, where physicians report care given that was not given, and that is easy. But there are a bunch of other things where they keep changing the regulation retroactively, and there are documentation things that then turn mistakes into fraud, and it has created a great deal of intense feeling on the provider side.
So I think that it really would be worth spending some time on this, and we had a 1-day meeting that related to the - Pruva[?] concept team on attachments in Chicago, with a large variety of payers and some providers, and the issue about whether the fraud - well, firstly, the attachments are really used for two purposes. One is the validation of the claim, and most of the requirements there are fairly straightforward and many could be automated.
The other part is for fraud detection and correction, but when you get to fraud detection, it typically often requires audits and going out, physically present. If those were just coupled, one might be able to find a simpler kind of approach to things.
So it is a messy world. I want to know this 10 percent figure, though. Is that really sort of with fraud with street meaning, or is that what some of the -
MS. FYFFE: First of all, no one really knows how much fraud there is in the system, because there have not been studies done about that. In 1992, the General Accounting Office came out with a report that estimated that the amount of dollars spent on health care in this country that are lost to fraud and abuse approximates 10 percent, and it is not easy to determine how much of that is fraud and how much of that is abuse.
There has been no survey done about the incidence of fraud in terms of looking at all the claims or a sample of claims to see how many are fraudulent or abusive. The difference, for practical purposes, between fraud and abuse is fraud often means that someone has been convicted of fraud and, you know, there has been a criminal or a civil prosecution. Abuse is more of a gray area.
DR. MCDONALD: Which way is the direction? Is that abuse of the administrative side against the practitioners or practitioners against - where is the arrow on that?
[Laughter.]
MS. FYFFE: Well.
[Laughter.]
DR. MCDONALD: You can see what side we are on.
MS. FYFFE: I have medical doctors in my family, so I have this discussion quite frequently.
But again, I want to come back to the original purpose of this roundtable discussion yesterday was to try to identify the issues surrounding this tension between the need to investigate fraud and look at individually identifiable health information and then the need to retain or maintain the confidentiality, and the folks that were here yesterday were talking about the nuts and bolts and operational processes involved in actual investigations and why they needed to access the information and, again, the laws that permit them to do that already. Particularly the federal folks talked about that.
DR. DETMER: Richard?
DR. HARDING: Well, it was basically yesterday the same group we had about a year and a half ago coming in that talked about inspector generals and so forth. I think we had that same group.
They still believe that privacy is a shield that people use to keep people from getting at them. So they are scared that they are all crooks, and therefore, I hide behind privacy so that they cannot come in and catch me. They still believe that. They said it yesterday.
They still feel that their hands are tied, and please don't tie any more with federal legislation, and they gave some good reasons. I am sympathetic. I mean, I really do want fraud caught, myself. They were talking about the statute of limitations, the tremendous amounts of volume in comparing billing records against medical records and the need for access. They were very convincing about some of that that needs to be done, but there is still that, in my opinion, that creed of privacy is hiding out as opposed to a value.
Now they did not say that exactly, but I kept hearing that in the thing. One of the things that they did mention, when we talk about the 10 percent, was that Susan Callahan did not say 10 percent fraud. She said 11 percent of Medicare claims were improper. Now I was going to try to get her to nail down that term, improper, but it scares me.
MS. FYFFE: I think that was based on a particular study. Please don't quote me on this, but it might have been in Florida. I am not certain. But there was a study of a particular region of the country.
DR. HARDING: In 1997.
MS. FYFFE: Yes, and they found that 11 percent of Medicare claims in a particular region of the country were, in fact, fraudulent.
DR. HARDING: No, no, she did not say fraudulent. She said improper.
MS. FYFFE: Improper. She said improper, okay.
MR. BLAIR: Probably a small portion of that they were able to specifically identify as fraudulent, but again, nobody really knows.
DR. DETMER: Marjorie?
MS. GREENBERG: I just wondered, because this issue came up with the recommendations that both the committee made to the Secretary and then the Secretary made to Congress, was it a discussion about recognizing that identifiable data or records is probably needed in order to identify fraud and abuse? Was there discussion about once they have the records - did this come up, the issue of once they have the records then using information in the records about the patient that might actually indicate the patient is doing something illegal as opposed to perpetuating the fraud and abuse, and what their positions were on that?
MS. FYFFE: That discussion came up. I think there was at least one example of - and someone here asked the question about if you should discover that someone was also abusing narcotics, what would happen, and there was not a conclusive answer. I mean, that was a point of discussion yesterday.
DR. HARDING: Well, they brought up the issue that a federal employee has an obligation to report a crime, just as the Secret Service has an obligation to - they brought up the Clinton issue. So, therefore, if they are going through looking for a crime in one area and see another crime, they have an obligation to pursue that crime, and that can be a real problem.
MS. FYFFE: That is for public employees.
DR. HARDING: Yes, that is right.
DR. DETMER: Jim?
MR. SCANLON: Well, the emphasis yesterday was on fraud and largely health care fraud, and it did not get into law enforcement access generally, which is another matter. It did get into public program fraud and not just health care fraud.
But to some extent, their authority is governed by the laws they operate under. HHS in the Medicare area, for example, if they came across information in the context of reviewing individual medical records, there are other laws that may govern it. If there was evidence in the record of substance abuse, for example, those efforts might be protected by the federal substance abuse statute, as well. On the other hand, the FBI in the course of investigation has a broad detection authority, and they might very well use information that would not be protected and otherwise.
But we asked the question, I think, Kathleen, about why do they - about this balance between confidentiality and enforcement, and they are quite convincing. I mean, you would be convinced that in the case of - clearly there are villains at work here and some of the fraud, very sizable. It was largely provider fraud, I think, that they thought they came across.
DR. DETMER: Including total construction of fake records and then billing to it, the medical records as well.
MR. SCANLON: They were ingenious frauds, and they thought - they now, depending on the state and depending on what laws they are working under, they have some procedural barriers they have to go through. Often it is to - they have to convince either a superior or a court in some cases that they have enough evidence in one of these to actually get access to the medical record, and they clearly did not want any more of a barrier in terms of doing it because of time considerations and so on.
MS. FYFFE: Another point which you all should realize - you may not - in the very same title, too, of HIPAA, most of that title is anti-fraud, and in there there was a new procedure, I would call it, for administrative subpoenas of records, and I am not certain that it was that strong of a procedure before HIPAA was enacted in 1996.
MR. SCANLON: I think it was regarded as giving the Attorney General more authority and ease of getting certain records.
DR. HARDING: One of their points that was interesting to me coming from them was that they asked to not be limited more in their access but to have more severe penalties for misuse. So the misuse penalty has a bigger effect than you can imagine on agents and so forth, and felt that that was a better way to go about it than decreasing the access.
DR. DETMER: Yes, I am glad you raise that, because I think that was something that all of them sort of just really kind of focused on, and one of the things that is very interesting, I think, in the tension of how does a society deal with this issue. The tension between access to information for a variety of useful social purpose and the legitimate concerns of privacy is oftentimes the cost and administrative burden of trying to still serve these other functions if you in fact do enhance privacy.
For example, if you took all unique identifiers off of records, well, if they are paper records, it is a phenomenally burdensome and costly kind of enterprise, so much so that you essentially are really saying, well, we will do a third of the investigations that we used to do, unless society is going to be that much forthcoming with dollars, which probably they will not.
So you have these very kind of practical dollar issues almost, it seems to me, and I think this notion that really upping the ante in terms of penalty is something that I think really does look attractive. Now, you have the other concern, I think, that Clem put his finger on, though, as well, and that is, you know, I think in fact everybody has a stake in not seeing true fraud exist. The issue is where you are dealing with definitions of retroactive abuse, if you will, and prospective abuse. I mean, how you deal with the regulations and such is very critical, because if the legitimate professionals and practitioners really become convinced that they cannot win because of a gotcha kind of situation, that really is corrosive, it seems to me, and I think the concern you get is how do you, in fact, strike those balances. I would like to think that as we move toward computer-based records you have at least more of a capacity to make some of those changes that paper records really do not allow you to make in terms of making the data more anonymous.
But at any rate, I think it was a good, very good panel on an interesting set of discussions.
Any other comments on that? Do you have more from your group?
MS. FYFFE: No, not at this point. I do have a question, though. Earlier, a few minutes ago, you said that this issue cut across two of the subcommittees.
DR. DETMER: The issue of if we were really going to look at what mechanisms does society have that it could put in play relating to fraud and its administrative management, if you will, as well as obviously the policy dimension on privacy and confidentiality. That is my phraseology. John, you might want to -
DR. LUMPKIN: Actually, it was privacy and confidentiality, standards and security, and quality.
MS. FYFFE: Okay.
DR. DETMER: Okay, I think it is noon or right at it.
Yes?
MS. GREENBERG: I just wanted to thank Kathleen Fyffe for putting together the session yesterday.
MS. FYFFE: Oh, you are welcome.
DR. DETMER: Thank you. Yes, that was very good.
MS. FYFFE: And the intent was not to have a roundtable with all sides represented. So that was by design.
[Laughter.]
It was a single-sided table.
DR. DETMER: A semicircle.
MS. FYFFE: Thanks.
MR. SCANLON: Kathleen, on the privacy workgroup - we will have to wait for Kathleen Frawley to get back, but I think there were similar panels envisioned for future meetings dealing with employers' views, trying to understand employer use of individual health information, and pharmaceutical benefit management practice, how that all works. So I think those are probably planned for future meetings.
DR. MOR: I just have one comment. This is a very interesting discussion. I have talked to other folks in the Attorney General's office in Rhode Island, and I suppose, you know, I read all the New York Times stuff about the privacy hearings, and it never dawned - I never, myself, even though I am aware of it, juxtaposed - it is really not an issue of privacy versus just the FBI going in and getting your record and trying to find you. It is rather two social goods, and I do not think it is adequately portrayed in that manner in the press. It is really much more focused on the vulnerable person whose information will be violated by FBI, as opposed to the money saving.
MS. FYFFE: The other thing that was brought up just very briefly yesterday - there is a third dimension to this, and that is the falsely accused provider and how you maintain their reputation and credibility in the community, you know, if in fact they are not convicted of fraud and yet they are under investigation. So they were somewhat sensitive to that, as well.
DR. DETMER: Okay, why don't we break for lunch, and then we will resume with our other subcommittee reports, let's say at 1 o'clock.
[Whereupon, at 12:03 p.m., a recess was taken until 1:05 p.m. that same day.]
DR. DETMER: I would like to get started again, because I think we would all enjoy actually adjourning before 5:00, if we get through with our work. You may have seen the yellow pages in a stack over there against the wall. It is about the size of the yellow pages, at any rate. Mary Jo brought some of these up. Healthy People 2010 Objectives: Draft for Public Comments. I suggested that all of the members probably would not mind having a copy of that.
They are going to send them to you, unless you would rather do some aerobics on the way home.
Okay, we will pick back up with the subcommittee and workgroup reports. Who is up? Simon?
DR. COHN: I am. We are, as part of the B
DR. DETMER: Simon and Jeff?
DR. COHN: Yes, Simon and Jeff. This is a report on the CPR Workgroup meetings. I think I want to first of all thank members of the workgroup for the good work over the last day and a half, as well as staff support, and of course my co-chair Jeff, for I think what has been a very productive set of meetings. Work Plan Version I is as complete as it is likely to be for the moment, is effectively complete, and has been distributed to the workgroup. This is not anything for balloting at this point, but we certainly would like to make sure that any members of the committee that want to have a copy of it, you know, we have copies here, and we would be happy to give them to you for comment.
We will be preparing an executive summary of the Work Plan to actually bring to the full committee in November for further discussion and hopefully agreement on.
In terms of the meetings, obviously we did not have a lot of time. Yesterday we spent about two and a half hours meeting, today about another hour. So we did not have a chance to completely go through the Work Plan but effectively agreed on the focus of the activities and identified a number of first steps that needed to occur between now and year end.
I think it was very obvious that we needed to begin to solicit public and industry opinion and have identified a date for hearings to begin to do that. In fact, I think I want to announce at this point that we will be holding public hearings on December 8 and 9 in Washington, hopefully in this building in this room, 505, to begin to talk around issues related to CPR.
The areas of focus that we see for those hearings are, first of all, to begin to solicit feedback and input around the overall what is described as value proposition related to the area of work that we are beginning to become engaged in. In the Kennedy-Kassebaum bill, the provisions state that we will be coming up with recommendations and legislative proposals. They are obviously different than other activities around standards that we have been engaged with so far, in the sense that there is nothing that requires implementation. So we want to make sure from industry and from the public that we are engaging in the right areas with the appropriate focuses. So we intend to discuss the legislative pieces with them, also discuss the Work Plan, and begin to solicit some feedback on are these the right areas of focus and, if so, how should we start in those areas and what would be of greatest value.
We are also hoping, as time permits, to begin discussions around what sort of criteria we ought to be using in areas related to standards and all of that, to use as the basis for what ought to become legislative proposals or proposals for the Secretary.
In this hearing in December, we are going to be anticipating holding hearings for a day and a half. The last half day will be an opportunity to digest what we have heard, review the Work Plan based on that knowledge, and further refine it and modify it as needed. We expect that to be sort of the pattern for hearings throughout the year, where we solicit input for a day and a half, and then the last half of the second day will be to digest and synthesize what we have gotten.
I should also comment that I think we are anticipating out of this hearing in December that we will come to the Secretary - actually come here in February with a letter hopefully to be sent on to the Secretary discussing these issues around value proposition and what we intend as some of the next step activities to address those areas. We think that that is an appropriate probably two-page letter to the Secretary just informing her of what we are talking about doing.
Now the other piece that we began to talk about had to do with G-CPR, the Government CPR initiative. We heard a report on the status of the initiative. They now have a contractor, I think, for their effort, to my understanding Lytton PRC[?], and they reported on the status. Now the workgroup has been asked to be an advisory group to G-CPR, and we have begun discussing the nature of that relationship, and I think at this point it is very clear that it is going to be an ongoing working relationship. We think that there are opportunities to leverage the work occurring on both sides to all of our mutual benefit, and of course this is all enhanced by the fact that people intimately involved with G-CPR are actually part of the staffs that report to the committee. So this helps for an ongoing close collaboration.
Questions? Comments?
DR. DETMER: Clem?
DR. MCDONALD: Did they have a hard copy from this morning's G-CPR report?
DR. COHN: No, it was actually yesterday afternoon, and no, there was no hard copy.
MS. GREENBERG: The transcript. The meeting was transcribed.
DR. MCDONALD: Is the contractor's proposal available, for G-CPR? If the contract has been let - I mean -
DR. FITZMAURICE: Yes, all contracts that are let are then a matter of public record. You can get them just by writing in and saying under the Freedom of Information Act, I would like to get a copy of the winning proposal.
DR. MCDONALD: The reason it is of interest is not because I want to know the business side, it is because the specification was to tell us how to do it. I mean, it was very general, asking them to make proposals to come up with ways to solve this very generic problem, and it would be of interest to see what they are proposing if it is more specific.
MR. BLAIR: Well, they have also indicated to us that they intend to provide us just as soon as they can what they call their framework, which is sort of an architecture for being able to provide the interoperability between all of the systems. So we should be getting that.
DR. MCDONALD: Would that be in the contractor's proposal?
MR. BLAIR: Well, apparently there has been a delay in providing it to us because of the fact that some of those negotiations related to contract are still in process. So, you know, what I am saying is we should be getting that as soon as it is available, and it will be available to you. I think that is what you are looking for.
DR. DETMER: Other questions or comments?
DR. COHN: Jeff, do you have any comments from the meeting?
MR. BLAIR: No. No, you summarized it excellently.
DR. DETMER: I just want to thank the workgroup and the two of you for getting this off the ground as well as I think you are doing it. It is going to be very useful, and I think the idea of the executive summary will be particularly helpful, too, to help the Department and others understand how you are going to go about it.
Okay, I think then we are ready for Standards and Security.
DR. LUMPKIN: Well, I did want to make a comment about the workgroup. It is obviously a lot of work, and both of these individuals have had the perseverance to go through it, and it really gives a new meaning to the word patient record.
[Laughter.]
The subcommittee did meet. We do have two letters that I would like to present to you, but first just two comments. There are a couple of things on our plate. One is the Unique Health Identifier, which we have not quite figured out yet what to do with that. So we hope to have more information once we figure out what the status of the NOI is. As we all know, the Vice President in his wisdom took our position and commented that he did not really want to see the unique identifier go forward -
DR. DETMER: Or, at the minimum, arrived at the same conclusion.
DR. LUMPKIN: Consistent, yes. So it will take a little while to figure out exactly where we are going to proceed from here and what time frames, but there is no intention at this point to have any hearings or move forward until we get clearer direction from the Department.
The other issue is the various transaction - NPRMs are in the process of having the Department, as was reported on, prepare the responses to the various comments, but we do also have the charge of trying to figure out how we are going to maintain those and look at changes, and so we are going to be looking forward to establish some hearings, probably in the winter, to begin to address that issue.
The claims attachments, we really did not do any progress on that, but we will expect some initial work product being prepared by the Department, looking at this more as a standard in development, where the first phase will come out and then over time that that will be prepared.
The final item before we go to the letters has to do with an issue that came up that we are going to try to have something for the full committee. It is based upon an activity that Clem had some involvement on, as well as us in the state, in relationship to immunization registries and looking at the implementation of the HL-7[?] messaging standard related to immunizations. The issue has to do with there seems to be a fair bit of wiggle room within the HL-7 standard and trying to come through a process of standardizing the implementation of that so that a HL-7 immunization record for a child from Illinois who moves to Georgia might be shared and also facilitate the process of developing these registries throughout the country. So our hope is to have a panel for the full committee to give some insight into that process so we can really see a real firsthand implementation.
Finally, we have two letters, which all of you have a copy of. The first is a to whom it may concern, and this is in relationship to the security NPRM, HCFA 0049-P. Just to remind everyone about this particular standard, based upon our recommendation and our hearings, this standard is designed to be scaled, which means that there is not a specific standard that applies for all facilities. Depending upon the size of the practice, the scope of the practice, the type of plan, the type of facility, the security requirements may vary. So we outlined some general requirements for the plan and the NPRM itself refers to a number of standards that could be used by facilities as they implement their specific plan.
Our letter, as you see before you, just comments upon the fact that we appreciate the NPRM and the fact that they follow the suggestions and address the issues that we raise. So I would like to move that - I was going to get it on the table for discussion by moving it.
DR. DETMER: Is that a second?
MS. FYFFE: For discussion?
DR. DETMER: Yes.
MS. FYFFE: Yes.
DR. DETMER: All right, it is on the table for discussion.
Kathleen?
MS. FYFFE: The letter that says to whom it may concern, I have a concern about the -
[Laughter.]
I have a concern about the second sentence in the second paragraph. It says health care organizations have been slow to adopt strong security practices, largely due to the absence of strong management and organizational incentives. I think that that is a pretty bold statement, and I am wondering if we could change that sentence so that it says health care organizations have been slow to adopt strong security practices for a variety of reasons.
DR. BRAITHWAITE: The sentence is a direct quote from the committee's report to the Secretary.
MS. FYFFE: Yes, and I had the same problem with the committee's report.
[Laughter.]
DR. DETMER: What is your pleasure, folks?
DR. MCDONALD: I support that, because, really, this is an inference, and there are all kinds of other - you cannot say enough to explain - it might sound pejorative.
DR. LUMPKIN: That is fine.
MS. FYFFE: So again, let me repeat. Health care organizations have been slow to adopt strong security practices for a variety of reasons.
DR. COHN: And maybe the next sentence needs to be changed, too, because it talks about changing these incentives. So what is your interest in changing the next sentence? "- is a positive step toward changing this, with its requirements that all - "
MS. FYFFE: Yes, that is fine.
DR. FITZMAURICE: I might note that one of the reasons why there has not been a rush to adopt these is probably because of the cost of security, but it may not be inappropriate to avoid mentioning costs in this, since the NPRM does not address cost strongly. But I wanted to raise it to everybody's attention that there is a cost to security. I mean, if it were cost-free, why not do it? Well, it is not cost-free, and that is a big barrier.
I am suggesting leaving it as it is but having an understanding among the group that we have not addressed the cost issues.
MS. FYFFE: That is one of the reasons. For a variety of reasons -
DR. FITZMAURICE: I mean more explicit than the variety of reasons.
DR. DETMER: All right, all in favor?
DR. FITZMAURICE: One more change. I would suggest that the verb are in the last be changed to is. A technology-neutral standard is of particular importance.
MS. FYFFE: Yes, that is correct.
DR. DETMER: That is quite appropriate.
All right, any more discussion?
[No response.]
Hearing none, all in favor say aye.
[Ayes.]
DR. DETMER: Opposed?
[No response.]
DR. DETMER: Abstentions?
[No response.]
DR. LUMPKIN: The second letter refers to the Paperwork Reduction Act, and as we have done on many of the transactions and the other NPRMs, we argue that the Paperwork Reduction Act should not apply. In this particular NPRM, we are only arguing that for the electronic signature component of that. There are other provisions which certainly will require reporting and should be subject to the Paperwork Reduction Act. So this letter just makes that point.
DR. DETMER: You have this. Is there a motion to move?
MR. SCANLON: I move.
DR. DETMER: All right, is there a second?
MS. WARD: Second.
DR. DETMER: All right, it is open for discussion. Hearing none, all in favor say aye.
[Ayes.]
DR. DETMER: Opposed?
[No response.]
DR. DETMER: Abstentions?
[No response.]
DR. DETMER: All right, both of these letters have been unanimously approved.
What else do you have to report, sir?
DR. LUMPKIN: That is it.
DR. DETMER: That is it? All right. If so, then it is time to re-engage, unless I am missing a workgroup. Have I missed anyone? I do not think so. All right, great.
We are back to tabs G and H and our discussion of the revised guidelines. What does the group wish to do?
John?
DR. LUMPKIN: I would like to suggest that after hearing some serious consideration and talking to my colleagues that we just scrap the whole thing. I think that as special government employees we have certain responsibilities, which is our relationship with the Department. I do not think we need a guideline for that. I personally do not care what really happens with committee documents. If people want to share them, that is fine, and given how much discussion we have had about this and the confusion, maybe it is just better not to have them.
DR. DETMER: All right, other comments?
Barbara?
DR. STARFIELD: I feel the same way, with reflection on the discussion yesterday. There are too many ramifications of it to even have a policy, and it is very clear what has to be done, and that is if someone wants to request a document, they know where to go, and it is our responsibility to tell them where to go. So I think there is a -
[Laughter.]
DR. DETMER: Elizabeth?
MS. WARD: I think I would disagree. I think there needs to be something in writing that people can hold as a standard. I do not feel terribly strong about it, but I think it would be good to have something in writing.
DR. DETMER: All right, others? Yes, Jeffrey?
MR. BLAIR: Just to make sure that I understand what you meant by scrap the whole thing, are you saying that we would abandon the attempt to modify the rules according to the modifications that Marjorie has submitted to us, because I thought Marjorie's modifications were fine.
DR. LUMPKIN: Actually I personally also felt that they were fine. I think that there are people both on the committee and off the committee who do not feel that they are fine, even though they mostly just paraphrased or restated the regulations, but the regulations are there whether we have guidelines or not. So let the regulations speak for themselves. Let us not spend time on trying to incorporate them into our own internal document. So I would actually just be in favor of eliminating both the previous set, which have been called into question, and the current revision.
MR. BLAIR: Well, the reason that I would support approving the modifications that Marjorie has set forth is that - and these, quite candidly, these were put forth in response to some concerns that Bob Gellman[?] had put forth, and I realize that he has indicated it does not completely satisfy the issues that he has raised, but I think that it does address, to the degree that we can respond to them, and I feel like we at least ought to make that positive step, knowing that we have done everything that we could to respond. So I would support - as a matter of fact, I will go ahead and make the motion. I will make a motion that Marjorie's modifications be approved.
DR. DETMER: Well, Marjorie actually was reflecting the Executive Committee. So if it is a motion, I think it ought to really be the Executive Committee's -
MR. BLAIR: Tab G.
DR. DETMER: Is there a second to that?
[No response.]
DR. DETMER: Well, at the moment there is no second.
DR. MCDONALD: I would like to support John's position. As I recall, Gellman really thought that these could not be done, because - I recall a discussion where he said there are always leaks, and you can never write the thing clearly enough. I think he was against having it in the first place. Gellman, I thought, was against having it in the first place.
MS. GREENBERG: Yes, he was. I assume you are talking about scrapping the ones that the committee already adopted. We could adopt the modifications and then scrap the whole thing.
[Laughter.]
DR. DETMER: Vincent, and then Richard.
DR. MOR: Just as a point of information, if I have understood all of the subtext behind some of this stuff, I am assuming the language from the letter from some legal firm about violating acts of so on and so forth is somehow pertinent to this, and really the issue is drafts of documents before they become formalized, their accessibility. Is that really up and above everything else?
DR. DETMER: It is more complicated than that.
DR. MOR: I need to be enlightened.
DR. DETMER: John, do you want to -
DR. LUMPKIN: Again, I think that there are two categories of documents. There are documents that are in our category as being special government employees, we are responsible - we are given documents by the Department. It is not our right to choose whether or not to release those documents. But there are guidelines that we are required to follow, just as we are required to follow the guidelines for conflict of interest and other things that pertain to federal employees, whether it be for the day or for the year, and that is what was in our guideline. So we do not really need that. We do not need to vote on it. It is there whether we vote it up or down or not.
The second one are committee documents, and our guidelines attempted to sort of say at some point what John Lumpkin writes becomes a committee document. At the point it becomes a committee document, then it can be released, but until it becomes, then it is a working paper or something that I might share with Simon or somebody else. That really started to get so convoluted that I just do not - I think we are kind of at the point of saying why even bother with doing that.
DR. DETMER: Now, I think, just to clarify - Bob Gellman's name came up a moment ago. As far as this committee is concerned, it both is interested in and has been following both FACA[?] and FOI guidelines, has been doing that, and certainly it has aspired to, and as far as we know, it has done. But at any rate, that is also one point of some disagreement, if I understand his thoughts on it.
But I think the issue, Vince, actually is a variety of these issues, and I think part of it also is how do you craft language that pulls together a variety of issues, from relations to media as well as dealing with government documents, our own internal documents, and so forth, and I think the feeling was, gee, it is just getting too complicated to candidly give more light than heat to, and maybe that is part of what I am sort of hearing today.
Richard?
DR. HARDING: I would agree with that. I would agree with John's motion as stated. I think we had three attorney's tell us three different things. At that point, we started having to really narrow and get tighter and tighter, and I think it would be easier to let it go and maybe come back to it at some point, but right now I think that John's suggestion is the proper one.
DR. DETMER: All right, Marjorie?
MS. GREENBERG: I am not going to argue against that. I just want to mention that there are some things in here - and there are more actually in the next document - that are just basically stating of the rules and regulations, et cetera, such as the conflict of interest. All of those are still valid, and we may as the Executive Secretary provide some explanation for people that is like this, because it could be helpful to people who serve on the committee or those who follow its proceedings. Also, I think we tried to make it more institutional rather than informal at this meeting of making sure the documents that are being discussed in a public meeting, whether it be by the committee or a subcommittee, will be available to people attending the meeting at the time of the discussion. I intend to continue that, as well.
So I think even scrapping the guidelines does not mean that everything in them gets scrapped, obviously. It is just that trying to put them into a guideline that can be supported by everyone around the table, exact language, et cetera, may have proven to be elusive.
DR. DETMER: Kathleen?
MS. FYFFE: These guidelines are not perfect, but I do find them helpful, and I would say that we should adopt them, use them, whatever, and perhaps even have copies of something like this, not to create more paper here, but on the table, because I know people out in the public audience may not know what FACA is and the types of constraints and so forth that we work under.
MR. SCANLON: Regardless of what the committee decides to do about the member guidelines, remember that you are subject to FACA and it is a very open policy in terms of committee documents. In essence, any committee document that is requested, for the most part, will be made available, and to the extent that you are trying to make guidelines to govern your own behavior, the problem has been that it tends to look like it is somehow less open than the FACA guidelines themselves, and I think that is why we have had a lot of confusion. So in a way, you are digging the hole deeper each time you try to clarify going beyond FACA or going less than FACA. But it is a very open policy in terms of FACA in general, and just about all committee documents will be available.
Government documents I think we will have to discuss later, because those are different. Those are documents that are made available to you, pre-decisional documents in HHS. I think it is our burden to let you know that that is the case and that they are not to be shared.
DR. DETMER: Paul and then Lisa.
DR. NEWACHECK: I support dropping the guidelines. I do not think they are really necessary. I think that the committee members, in my experience, have been very responsible in their actions and exercised discretion when needed, when it comes to draft committee documents and the like, and I also feel that a literal interpretation of what is written here would imply, as I said yesterday, that we cannot speak to other federal employees about what we are working on in draft form, and I think that is inappropriate. So I would favor just dropping the whole set.
DR. DETMER: Lisa?
DR. IEZZONI: I think one of the things we talked about yesterday during that lengthy discussion was the outside perception that we are being secret, and I support what Paul suggested yesterday, which is actually having a guideline that opens with a statement about the goal of our committee to be open and to try to share information. I mean, we are a committee about information, and it is our basic principle that we want to be as open as possible and then simply have the document repeat relevant parts of FACA and the Freedom of Information Act that pertain to our committee and not go beyond that, but just have in writing the parts of the Freedom of Information Act and the FACA act that we are operating under, because sometimes it is hard to find that language, and if we have it very clearly in front of us, it will just remind all of us of what our obligations are. So basically not trying to paraphrase for our specific purposes, but repeating for our specific purposes.
DR. DETMER: John, and then Kathleen.
DR. LUMPKIN: In fact, I think that there have been a number of good suggestions, and I know the staff is taking notes of documents that would be useful to be available, but I do not think we need to vote on it, and that is perhaps the problem that we have had with the guidelines, that we have had to vote on them, where it could just be something that is available and in our reference book that would say a short summary of what FACA is and what to do, maybe a question and answer - what to do when you are called by the media, what to do when you are called by somebody and asked for a document.
DR. DETMER: Kathleen?
MS. FYFFE: I fully support what Lisa has said. I agree with it. That would meet my concerns.
DR. DETMER: I mean, something along the lines of what John was saying that would reflect that, or what?
DR. IEZZONI: I like having the statement in principle, and that was not addressed by what John said, but that was part of what I suggested. It could be both -
DR. MCDONALD: I think I hear agreement, but we just have to get it together.
MS. GREENBERG: Agreement of principle of openness, I mean, whether that is your principle or not, you do not really have a choice in that.
DR. IEZZONI: No, I know. That is why we are not voting on it. We are just advertising that because, as we talked about yesterday, there is this perception abroad that we are not. So we are just saying that we are and then going on to repeat, you know, following what John has suggested -
DR. DETMER: I am really not sure how much of an abroad perception there is that we are not, Lisa, which would worry me, too.
DR. IEZZONI: Well, I think you brought this up yesterday.
DR. DETMER: Well, I am not saying that there has been not one word. It is a big country, and it is a free country. So I guess I am trying to worry a little bit about the balance of these things. I would generally say, yes, the issue has been raised, but I think it is another question of whether in fact we really have that perception out there and how much of a perception becomes one.
Kathleen?
MS. FYFFE: My perception is that we have a problem, and this is a pretty high profile federal advisory committee, but there are folks listening on the Internet and folks in the audience that have no idea what a federal advisory committee is or does or what its responsibilities are, and it is not easy for them to find that out. I mean, I sat in the audience here for a year before I was a member of the committee and realized all this. So I think that reiterating or summarizing what an FAC is at the beginning of each meeting makes a heck of a lot of sense, because you are always going to have new people in the audience and on the Internet, and they are going to say who are these guys? So perceptions are very, very important.
DR. DETMER: I do not think anybody is arguing that. I think the question is are we saying that we do want some written document that speaks to what we do and intend to do but not necessarily have -
MR. SCANLON: Well, we do not really want to go paraphrasing what the laws and regulations are. That is what gets us into trouble.
DR. MCDONALD: I think what we should do - what we just heard. We should make a document, staff make a document, that would start with an introductory paragraph saying we are open and we are good guys.
[Laughter.]
And we really are very likeable when you see us face to face.
[Laughter.]
DR. DETMER: What I think some of us are feeling is that we have struggled with this in the Executive Committee lo many months, trying to in fact come up with some documents reflecting -
DR. MCDONALD: I understand. And then take the literal sections of those regs that apply and have that be a package that humans who are interested in this activity can more easily get.
DR. DETMER: John?
DR. LUMPKIN: I am not sure I understand the proposal. Would the proposal bring back language for approval by this committee?
DR. MCDONALD: No. It would be a compilation of the relevant sections of either the GSA rules or FACA, and then start off by saying - an opening paragraph that would say the committee is committed to openness, which would be in our reference book, and we would not have to vote on it.
PARTICIPANT: Yes.
MS. GREENBERG: Any kind of opening paragraph stating -
MR. SCANLON: Essential information that we can simply include that we do not have to paraphrase what it means.
MS. GREENBERG: No, but any kind of opening statement about what the committee stands for I would be very uncomfortable -
DR. IEZZONI: Well, then why don't we just simply say that the committee operates under FACA and FOI, period.
MS. GREENBERG: And say and the federal advisory committee requirements.
DR. IEZZONI: It is implied here, but it is not as direct as it could be. You know, we need to be terse and absolutely direct.
DR. DETMER: I sense progress, or at least movement. No, I think it is progress.
All right, other comments, or are we ready for a motion?
PARTICIPANT: Do we need to vote on this?
DR. FRIEDMAN: Don, I do think it would make sense to supplement that statement and the relevant parts of the law with just a real simple question and answer that John suggested, based upon Marjorie's work. At least, like Jeff and like Kathleen, I actually thought it was helpful and it would be helpful to future members. You know, again, nothing that needs to be approved like guidelines, just real simple question and answer, and I think we have some of the answers right here.
MS. GREENBERG: And you could vote on the questions, but not the answers.
[Laughter.]
DR. DETMER: Others? Or are we ready for a motion?
John?
DR. LUMPKIN: I would like to move that we rescind the document that we approved at a prior meeting, Member Guidelines for Dealing with Media and Other External Organizations.
MS. GREENBERG: Actually, it had a slightly different name.
DR. LUMPKIN: Well, whatever it was.
MS. GREENBERG: Ground rules.
DR. LUMPKIN: Ground rules, or whatever the other document. I move that we rescind it.
DR. MCDONALD: Second.
DR. DETMER: All right. Is there discussion on that?
[No response.]
DR. DETMER: All in favor, say aye.
[Ayes.]
DR. DETMER: Opposed?
[No response.]
DR. DETMER: Abstentions?
[No response.]
DR. DETMER: All right, that is unanimously approved.
Any other motions?
DR. STARFIELD: Don't we need a motion on this proposal from the Executive Committee?
DR. DETMER: No. It just dies.
MS. GREENBERG: You have made a request to staff.
DR. DETMER: Unless somebody made it and we could vote on it, but it is up to -
MS. GREENBERG: Although that might be a good precedent, having to vote every time you make a request to staff.
[Laughter.]
DR. DETMER: All right, do we have to move to H then?
MS. GREENBERG: Yes. H was really prepared by staff, and I did not feel it needed a vote, and I think I am hearing concurrence on that. I do not want to rescind it.
DR. DETMER: No, well, we have not approved it anyway. So there is nothing to rescind at this point.
MS. GREENBERG: That is true.
DR. DETMER: John, were you going to comment?
DR. LUMPKIN: I appreciate the efforts by staff to provide this information in relationship to the Open Meetings Act and hope that we can use it as a reference.
DR. DETMER: All right.
DR. COHN: I do have a question related to a motion, just actually have a question related to one of the guidelines. I am just sort of curious of whether it was in FACA or elsewhere, and that had to do with Item 2, which had to do with the issues of quorum and meetings, and I would just - as I was beginning to ponder the issue of hearings and the recognition that we had bare quorums for workgroups this time, at least the one that I co-chaired. I just wanted to understand what happens.
MS. GREENBERG: Okay. FACA says that to conduct a meeting, a quorum of the authorized membership - actually I believe what FACA says is no meeting can be conducted without a quorum. Our legal advisor said - somebody raised, well, how do you define a quorum? She said it is defined in the charter usually, but it is not defined in the charter of this committee. Her recommendation is - I mean, she feels the legal definition of a quorum would be a majority of the official members of any particular group. That is a quorum. So that is what we put here. This was her recommendation. A quorum is defined for a full committee meeting as a majority of the NCVHS members. I do not think there is any wiggle room there. And for subcommittee meetings as a majority - and she just suggested actually subcommittees, not putting it in about workgroups. I am not sure why, and Deborah is not here today, but for subcommittee meetings it is a majority of the official members of the respective subcommittee.
I think since our workgroups for the most part are within subcommittees, I guess -
DR. DETMER: They all are.
MS. GREENBERG: In some cases, they do include members - a workgroup will include a member who is not on the subcommittee under which the workgroup is housed. That exists. In any event, I think that it is really - I believe it is between the subcommittee and the workgroup as to - and its workgroup underneath it - how you want the hearings sponsored. I mean, I know with a lot of the standards work in the past, with HIPAA, although there was a K-2 workgroup, we thought it sort of gave the hearings more standing by being under the full subcommittee.
On the other hand, if you want to be more visible about really getting into the Computer-based Patient Record area, you might think it would give it more visibility by saying it is under the workgroup. If it is under the workgroup, you are then probably talking about a quorum of the workgroup members, except that I think I would have no problem with if that quorum was made up of other members of the Subcommittee on Standards and Security. Certainly, as the chair of that subcommittee, you are an ex-officio member, I think, of your workgroup. But is this a - do people have concerns or issues with this?
DR. LUMPKIN: Well, first of all, my experience with dealing with lawyers is that you have to ask the right question or else you get an answer you do not like. What our goal is is that there are a number of scenarios where we could put on a hearing, through some illness or other reason not have a quorum of a workgroup or a subcommittee, yet there will be people who have traveled from out of state and so forth. Our only question really ought to be is how can we conduct that hearing and what mechanism can their testimony be recorded and available for the committees to assure that we do not abuse people who have volunteered to come, and that really is the question that I think needs to be answered.
MS. GREENBERG: Well, yes, there is another question, too, just from I think the point of view of managing the committee and the work of the committee. We are very reluctant to allow a meeting to be convened if there is not a majority of the members who are going to be there who have committed themselves to the work product. I think that it just has problems, both from the point of view of commitment of members and of disability and perception and all of that. So even though I realize you could go before Congress and testify with only one person sitting there, it really has not been the policy of this committee. So if we poll and find out that there is not going to be at least a quorum of a workgroup or a subcommittee that want to have some type of exploration, that we feel it is inappropriate to go ahead and schedule that meeting. Sometimes if you have a quorum or you think you have a quorum, at the last minute something happens, because you have just a quorum. But I wanted to mention the a priori issue, as well.
DR. DETMER: Simon, and then Jeff.
DR. COHN: Marjorie, I guess I am still grappling with the issue, because I understand that one would not want to go out of one's way to have a meeting where you knew there was not going to be a quorum, and I think there is no question that one would not want to have a vote on any matter of policy or substance if there was not a quorum present, but I am, I think, just concerned that due to unavoidable situations or otherwise, when one schedules a meeting, one inconveniences people, and then suddenly you discover that you do not have the quorum that you had anticipated, and I just think we need to come - once again, it is not a balloting issue. Perhaps it is an interpretation of FACA or something, but I am still grappling with that issue.
MS. GREENBERG: I do think that number 13 then, which has been invoked several times since several people learned about it, could go into play, but, okay, we are gathering information. We can continue to gather information. But obviously this is not a meeting in which any deliberations can take place, because you are allowed to gather information, solely gather information, in a kind of non-totally FACA situation, although I think you raised a concern yesterday about that. That certainly would not be the - we would not go into any meeting with that intent.
DR. COHN: I would agree.
DR. DETMER: Well, we have Jeff and Michael and then John.
MR. BLAIR: Marjorie may have answered my question. I do not know what item 13 said.
MS. GREENBERG: That is the one about the working sessions.
MR. BLAIR: Well, there is the perfect words. That is what I was going to ask, that if despite all good intentions and previous commitments, if a workgroup were to schedule a meeting with hearings and through bad weather or illness or unforeseen circumstances it turns out that a quorum of the members were not available but a number of the witnesses did arrive from all over the country to give testimony, could the session continue, and instead of being at the level of a meeting or defined with the label meeting, it defaults then to a working session. And I think you have just told me that is what would happen.
MS. GREENBERG: That is my suggestion. It seems consistent.
MR. BLAIR: Okay.
DR. DETMER: Michael?
DR. FITZMAURICE: What a country. I think John asked the right question. Marjorie, while emphasizing the commitment of all the members to be present at something they are sponsoring, I think Marjorie gave the right answer. I think Jeff summarized it beautifully. And I got a free hotdog for lunch. What a great day.
[Laughter.]
MR. BLAIR: What a country. What a country.
DR. DETMER: Well, I must say, I probably misstated myself earlier, certainly saying there were concerns about our processes. That is definitely true. I think by the same token, if we did in fact have people come and then we did not take advantage of their being there, I see enormous problems that would come from that, and I think as long as we do not make decisions at that meeting, I do not see a problem, and that is what you are saying.
MS. GREENBERG: Yes. I mean, we will not agree to convene the meeting unless we are having a quorum, but if something happens unforeseen or if someone leaves during the meeting, then we will try to at least be responsible and carry on. It does say that the DFO - remember him or her - can adjourn the meeting when such adjournment is in the public interest, if that seems to be the case.
DR. DETMER: Now, is it clear to us, though, whether a workgroup is a subcommittee, or you literally are saying you think there have to be enough - a quorum of subcommittee members for a working group.
MS. GREENBERG: No, a workgroup, we would allow a workgroup to convene a hearing or convene a meeting.
DR. DETMER: With a quorum.
MS. GREENBERG: Yes, with a quorum of the workgroup. I was just saying that that actually language is not in here about the workgroup, but it is the same - it gets back to the other issues. Since a workgroup is supposed to be working on this, then we should have a quorum on it.
DR. DETMER: Well, Jeff.
MS. GREENBERG: Well, I have it under the subcommittee, and we can get a quorum of the subcommittee, we can do it that way.
MR. BLAIR: A quorum in the case of a workgroup, obviously the CPR workgroup. That is supposed to be a majority of the members of that workgroup. Now, we considered that a number of government employees are members of the workgroup.
MS. GREENBERG: No. Nobody can be a member of any workgroup or any subcommittee who is not a member of the full committee.
MR. BLAIR: Thank you.
DR. DETMER: Are there any other issues in this?
DR. STARFIELD: I just have a question. Are we considering whether to adopt these guidelines? Is that what - are we considering?
DR. DETMER: Well, I do not think we are.
PARTICIPANT: No, no motion.
DR. DETMER: Are there any other comments on this before we move on?
DR. FRIEDMAN: This is tangential but related, and I am sure it has been brought up at some point, but it would probably be helpful at some point if we could consider other forms of attendance, at least for hearings or workgroup meetings, other than necessarily sitting here. The HISS Board of the CDC lets people dial in. There are alternatives, and depending on the nature of the meeting, those - you know it is technically feasible.
DR. DETMER: I am frankly very sympathetic with that. I think this is already a very busy commitment for people. Now I would have to say I really think as much as possible people need to be at these meetings, but I think with all of the other meetings, I think it is tough. You know, when you are having action items, I think there is no - it really is better, I think, if you are there. But I think certainly to be able to principally listen carefully, I think you can do that, and I think some efficiencies are probably worth considering, but I guess I am - what are your thoughts on that, others of you? Dan weighed in.
Clem?
DR. MCDONALD: I guess the question is question is is it legal? I mean, you are really talking about mostly voice, telephone dial-in, although we could imagine video. I participate in a number of meetings that way, and you have the advantage, if you are not there, you can just butt in on any conversation, because you cannot see what is going on.
[Laughter.]
I think if that option was available, I do not think we should encourage it, but there might be circumstances where you could save time by having people participate in a meeting which they could not have gotten to, and they would not then come the next day and revisit it.
DR. DETMER: Well, at minimum, it sounds like if it looks like there may not be a quorum and you would have to cancel the thing, it may be worth polling people to see if that is a problem.
MS. GREENBERG: I do not really know if you can count as part of the quorum.
DR. DETMER: Well, we will need to pursue that. We need to find out. Dan?
DR. FIELDMAN: I think it is less a question of encouraging it, at least for me, and more a question of if it is a choice between not attending or attending virtually, then it is better to do the latter than the former.
DR. DETMER: Lisa?
DR. IEZZONI: I think when we are bringing in people from other places to talk to us, it is respectful to be there in person. They have had to travel. And I also am unfortunately a big user of the mute button when I am on conference calls, and I will not tell you where I am. I may not be in the room while that call is going on. So I think - truth, truth, and so on. Well, I have not done this with you guys.
[Laughter.]
But I think that I would be, as a subcommittee chair, I would really - I think that there is a better interaction, although I am very sympathetic to the time involved, and I think one of the issues that we have to deal with is where there are 3-day meetings where people have to be here for 3 full days. I know that has been an issue for both Dan and Vince, but it kind of cuts both ways, because people like Elizabeth and Paul, who fly in from the West Coast, it is sometimes more - and other folks that fly in from the West Coast - it is sometimes more efficient to have a more extended meeting. So I think that it is not a clear-cut issue, but my feeling would be that if we are taking testimony or having a hearing, I feel people should be there in person.
DR. DETMER: John?
DR. LUMPKIN: I agree, but there are certain people because of their jobs, particularly state employees - there are times when governors put a travel ban on, regardless of whether or not there is funding in the budget or it is a federal meeting, or in May I am restricted from leaving the state.
DR. IEZZONI: John, we cannot argue with any of what you just said. All I am saying is that if it is possible, it should be a goal that people will be there.
DR. LUMPKIN: And I agree. I think we should consider that to be an extraordinary circumstance, but it is almost like the difference between what is possible and what is the norm and expected. We expect people to be here in person; yet, if there are very extenuating circumstances approved by the chair, then this should be allowed.
MS. GREENBERG: I was going to say there was one - at least one - there have been a few Executive Subcommittee meetings where we have not taken any testimony - we do announce Executive Subcommittee meetings in the Federal Register - where one we actually videoed you in, I think, and another one we brought in a few people, and that worked fine. So that kind of leads to just the last point I wanted to make that I just wanted you to be aware, although we are not voting on these, that there are a few things that we clarified here and that is that conference calls certainly that are for any kind of deliberative process, we will be providing opportunity for public participation. So you need to think through, too, whether - you know, let us know what is going to be going on at your conference call. If you are going to be talking about dates or kind of gathering information, it is one thing, but we are going to try to do that.
Also, we intend to institute this email that will just be something you cc. That is it. You know, in addition to everything else you are going to do with an email related to committee business, and just add a cc to this. But do not start doing it yet, because it is my understanding that we are still negotiating on the name and the facts, et cetera. But we have every intention of doing that.
DR. DETMER: And you will let us know.
MS. GREENBERG: Oh, yes. No, we are not going to let you know about it.
[Laughter.]
Yes. We will send you an email, and we will cc this. So that will be the clue.
DR. DETMER: All right, are there any - now, this has been a wonderful discussion, and obviously the whole goal of all of this has been to clarify better for ourselves and for the public how we try to do our business. So I think this has been very useful.
Are there any other items related to tabs G and H?
John?
DR. LUMPKIN: I just have one item, if I could sort of, a personal privilege. This, I think, has been a very important discussion for the committee and one that has allowed us to delve into a number of important issues. One issue concerned me when I read the statement that a member provided here who could not be here, Mr. Gellman, and that was there was one line in that original statement that was a personal attack upon one of our members, and I just wanted to say that I really did not appreciate that - it was not me - and that I would hope in the future that while we may have some disagreement on issues that we try not to be personal in our raising the issues and accusations against other members of the committee.
DR. DETMER: All right.
I do not think we need a break at this point, because we just did. Let us move on. That is what normally would be in our agenda right now. Let us move on to the - we are ready for you to discuss the Public Health and Health Services Research workshop.
MS. GREENBERG: Great, and Jackie, I believe, will be passing out a document to you. This is an update on a meeting that we have discussed with you in the past, and in particular we talked about at the last meeting, at the June meeting. This is a workshop that the National Center for Health Statistics and the Centers for Disease Control is sponsoring in conjunction with the Agency for Health Care Policy and Research and the National Committee, in the sense that you have helped with some resources.
This is a workshop on the implications of the HIPAA administrative simplification provisions for public health and health policy research and was something that we felt was needed for a variety of reasons and it has been discussed with the Data Council. Dr. Sonbeck[?] actually proposed doing this to the Data Council, I believe, about a year ago. Just as we have had a lot of concern about industry not being really aware of these standards or not understanding what was expected, to the extent that that is the case, obviously some of the other parts of our health care industry broadly, such as public health and health services researchers, are probably much less - are definitely much less aware what the implications are for standardized data and for administrative simplification.
The workshop is going to be held November 2 and 3 in Washington, D.C. It is going to be held at the 1 Washington Circle Hotel. What I have passed out to you is the tentative agenda, and it really is tentative, because we are sending it out with the letter of invitation, which is going out this week. By the way, the Lewin[?] Group is our substantive contractor on this. Ian Selinski[?] is the project director. There also are two other contractors who are working with us on the travel, et cetera.
We are asking people actually for comments on the agenda in the letter of invitation. At the same time, we did have, as I think I reported to you actually when we provided the executive summary of that meeting to you, we did have a planning meeting back in January, January 23, in which we brought in a large number of organizations, state-based, health services researchers, academicians. Dan participated for the national committee. And based on that planning meeting and then follow-up calls that our contractor has made with the people who attended that meeting and others that we identified who were interested or were not able to attend or we had identified subsequently, that the agenda has been put together. So there has been quite a lot of background work that has been done, including the planning meeting and a lot of phone calls, et cetera.
On the other hand, I welcome your comments on the agenda. As I said, in a sense, it is going out for comment to the invitees. I will tell you who identified an interest and willingness to participate in the meeting from the committee. That is whom the invitations are going to and if somebody really wants to and is not on that list, then let me know for sure. Lisa and Dan and Elizabeth and John, and I think that is it, but if somebody else from the committee wants to participate, please let me know. Oh, and Barbara. Excuse me, Barbara. No, you are on the list. I am sorry. Barbara definitely is on the list.
The next few pages is a tentative invitee list, not by name but by organization, and one of the main goals of this meeting is to try to initiate a process. It is not really just a one-time educational forum, though we will try to provide, both through background papers and some of the early sessions, some education as it were about the whole HIPAA process and the standards and the whole data standards process really and what the role might be of public health and health policy researchers, health services researchers, who have not typically really participated much in the standards development organizations, with the exception of certainly we have had some public health participation over some time in HL-7, but have not participated in the past in what we call the content committees, et cetera.
And that is evolving, too. As you perhaps know, the National Center for Health Statistics was invited to become a member of the National Uniform Billing Committee last March or so, last January, and is serving in that capacity, and the National Uniform Claim Committee is looking at its membership.
So I think this is an evolving situation, and what our concern was was that all these different interests, when they have common interests, if they could bring this together in a common coordinated way, then the content committees, the standards organizations, would be in a position to respond, but that if everyone sort of individually, every state comes in, or five states come in with different requests, and six health services researchers say, gee, it would be nice if we could do this, and that is not coordinated, then it will not be effective, and that obviously we are not going to get consensus on everything, and that we are not even trying to.
Except when you talk to people, there often is quite a lot of consensus that, well, these are our top priorities, and then, of course, depending upon your program, your research is going to have other interests.
So that is really what we are trying to launch here is some kind of mechanism, an infrastructure, consortium, what have you. So it is rather ambitious from that point of view rather than just being a one-time workshop. That would set up some kind of a process that would obviously need to be supported in some ways, and all of this is going to be discussed, but that would allow this to then allow that kind of bringing together of interests and concerns and then figuring out how we are going to represent that to the appropriate committees.
So we have a lot of groups on here. Some of them - at this point, we have one person identified and one representative identified. In some cases we have not even identified a representative, but we would like to be able to have that organization at the table, and then in some cases we have several representatives from the organization. If you see a group, given what I have described as our purpose, if you see a group that you think should be on here and is not, let me know. If you, in seeing the groups that are listed here - if you have a group that is not on here that you think should be, if you could give me that and the name of a person that at least we should send the invitation to, that would be very helpful, recognizing that we will follow up with phone calls, et cetera, and if the person who gets the invitation can identify the appropriate person, that is fine.
It is by invitation, because we are trying to bring in all these groups and really have people who can kind of go back, if not speak for their organization, you know, really officially at the table, at least can go back to their leader in their organization and they can go back and convey this to the - it kind of also - you know, you people who might bring back the message and also help with that consensus building process. So that is why it is not just an open meeting, bringing in as many people who might be interested.
We are going to really have some real working sessions of trying to figure out how we are going to achieve what we are trying to achieve here. So in that sense, too, we need a reasonable - you know, not to have too large a meeting. We are trying to keep it no more than 100. It said 75 to 100, but it looks more like the high end right now, at least in terms of inviting, but we will see who is able to come. We did inform all the people who came to the planning meeting about the date back in April. So although they are getting letters and invitations in September, this has been hopefully on a lot of people's calendars.
Yes?
DR. MCDONALD: I have a comment. Firstly, I think it is a very good idea. It does not necessarily reflect some of the really solid heavy and long-term activities that has gone on at CDC in at least, I think, four areas. So you must know about them, but maybe not as intimately as the folks in Atlanta, but there has been a 3 or 4-year effort in immunizations. There is new effort in cancer registry. There is an effort in clinical disease. CSTE has been - and Astefeld[?] is another organization that is not on here.
MS. GREENBERG: What was the last one?
DR. MCDONALD: I cannot spell it, but it is pronounced Astefeld. CSTE is on there. I do not know what Astefeld stands for, but I know that they always go CDC, CSTE, and Astefeld, and you cannot leave any of them out.
MS. GREENBERG: Right, they are all on here.
DR. MCDONALD: Okay, sorry.
MS. GREENBERG: And someone is invited from the immunization program.
DR. MCDONALD: Well, what you might want to do is just sort of caucus with some of the people at CDC - Dan Pollack[?] in emergency room - caucus a little bit to see what - because there is some coordinating going on already, and make sure that there is some leadership in terms of - because there is a lot of tendency for folks to come and say, well, there are no standards available, because I do not see this variable as a field. Like, you do not see ampicillin as a field. Well, you never do. It is always - so just maybe a referral of some kind from some of these guys on how they want to add it.
MS. GREENBERG: We do have - you may probably know - the CDC has a Health Information and Surveillance Systems Board. A committee of that board, or a subcommittee, is the standards subcommittee of that board, and it also has a standards and liaison. So they are making an effort within CDC to coordinate our attendance and representation and work with standards groups, and people who are part of that process are all going to be at this meeting.
I think we are not probably going to have time to go into a lot of detail about the specific - although that could be in some of the background material - about specific activities that have been undertaken in standards, but I think the relevant folks who are involved in all those activities and their counterpart organizations at least have been invited and hopefully will be there.
DR. DETMER: Others?
DR. FRIEDMAN: I think it is going to be a terrific workshop. One thing that I think would be helpful to make a little more explicit, Marjorie, is issues around the identifiers, employer, employee, plan. I realize that that is included within the health data standards, but having said that, I think it is so central to public health and health services research involvement of HIPAA that it should be -
MS. GREENBERG: Are you talking about the identifiers including the unique identifier for individuals or -
DR. FRIEDMAN: Well, including but by no means limited to and not necessarily even leading with it, but having said that, I think that all whatever floor of the identifiers should be earmarked as the implications of having identifiers for health services research and public health should be earmarked, again, particularly around implications for statutorily mandated data sets, because ain't one of us dealing with that, and that is a real issue.
MS. GREENBERG: That kind of leads nicely into the last page, which is a white paper that we are commissioning or having done. There is going to be a background paper which would be kind of like, you know, these are the players, this is kind of what the process is, this is what HIPAA is, and this is what the process is. The four papers - one is about, you know, how can the health data standards process and how can public health and health services research get into the game is the name of it, the tentative name of it. It is going to include a case study by New York State which has been very active actually both with a national uniform billing committee and with X-12[?]. We could try to include something in there, too, about some of these CDC activities that you have mentioned, Clem.
DR. MCDONALD: They are doing it. They are doing what you want to do. You may offend them if you -
MS. GREENBERG: Well, all right.
The second one is going to be - we have had a lot of discussion about the extent to which we should really try to get into the issues of privacy and confidentiality in the workshop itself. I mean, you could have a separate workshop. You could have many separate workshops on that topic. It is clearly a very important topic, and so how we are currently planning to deal with it is to have this kind of background paper developed which will actually not be finalized until after the workshop. That will try to tease out and address some of the issues that I know, John, you have mentioned in the past and mentioned in Chicago and I think again here, that there really has not been very much done to try to from an evidence base look at what some of the benefits are and what some of the risks are of having information available.
DR. DETMER: Marjorie, that sounds quite different from my reading of the target title at the moment. I mean, I think you maybe can do better than that, because I think almost everybody really wants to see - I guess what is not clear is how much does it really say. I think it kind of gives a feeling like those concerns are not somehow -
MS. GREENBERG: Real?
DR. DETMER: Yes, or legitimate.
MS. GREENBERG: No, that is certainly not the - this was the name recommended, but, I mean, this was a name proposed by the contractor. We can change the name, and this is not going out with the letter of invitation. It is just to you all. But I will bring back that comment.
And the identifiers can be addressed in that paper possibly, more from the issues of access and privacy and confidentiality.
Then the third one, applying health data standards, I think would be probably where the identifiers would be most directly addressed to public health. We are actually going to have two papers about applying health data standards, in a sense. The third on is going to have more of a public health focus, and the fourth one, which AHCPR is commissioning and working on, is going to be more directed towards health services research, although I think I put here under 3: what is one person's health services research database is another person's public health database. There is a lot of crossover for some of these data sets.
So although these are all being worked on as we speak, if you have additional suggestions, titles, or substance, just send me an email and I will make sure that it gets into the process.
DR. DETMER: Vince wants to send you a message now.
DR. MOR: Yes, I am going to put on my long-term care advocacy hat here, and there are a series of organizations and types which I think should be present. I mean, if the AMA and the Dental Association, which do not do an awful lot of health services research or at least no more than the long-term care associations do, then the long-term care associations, which are grappling with these data on an ongoing basis, should be invited. That can be AMSA[?] or ASA[?] or HACA[?]. They are local.
MS. GREENBERG: Can you send me an email with a name, with a contact?
DR. MOR: I will send you an email. In addition, there is a national association of state regulators, some of those regulation people, who are currently being charged by the Health Care Financing Administration with implementing over the next 2 years taking data from quality indicators that is derived from patient-specific information and form-fitting their survey and regulatory process in conjunction with those data. They are going to have to work with this information in a way that is very real and pertinent. So that group, some leadership -
MS. GREENBERG: Could you repeat their name? But you will put this in your email.
DR. MOR: I do not - I think it is the National Association of State Regulators -
DR. LUMPKIN: State Licensing and Certification Directors. I can find it off the Web page of ASCO. It is an ASCO affiliate.
MS. GREENBERG: It is on ASCO's Web page? All right.
DR. MOR: I do not know that much about it, other than I know what they have to do. I assume that if you have the national - not that I am an advocate for J-CO[?], but if you have NCQA, you probably want to ask J-CO. You know, these are lots of competing kinds of issues. Everyone is going to want to strut their stuff, so to speak.
Finally, on the state Medicaid side, the state of Maine has done actually some of the most exciting work about integrating information across all spheres of the long-term care sector and using it for payment, for planning, and for quality monitoring, and there are some really good people from the state of Maine who are doing that.
Finally, and I do not know who you have writing item number 4, the Projected Impact of Data Standards and Quality Measure Improvement Applications to Health Services Research - again, this is an area where in the long-term care field there really is a lot of movement, and there are several people out there who are doing this now, whether it is quality improvement at the individual level or state monitoring and those kinds of things.
MS. GREENBERG: Okay, AHCPR is taking the lead on that, but I will convey that to them.
DR. MOR: Well, AHCPR has the same kind of bias, unfortunately.
MS. GREENBERG: The same kind of bias did you say? It is a balance between really trying to get - but we certainly should have some of the long-term care groups, certainly those who would be relevant to this type of meeting.
DR. DETMER: Clem and then Kathy.
DR. MCDONALD: Who is the organizing committee for the meeting?
MS. GREENBERG: Who is the organizing committee? The planning group was - I did not bring that along with me, actually; it was in a previous agenda book, but it was NCHS, CDC, AHCPR, HRSA - of course, I am just naming the federal - and HCFA, obviously, HCFA.
DR. MCDONALD: Is that something I could look at later, who the people are? I do not need to bother the committee, just who the people are, to know that if it has - I mean, I still keep - the CDC, to see the people who are all active in this, or do you know what the name of the CDC person is?
MS. GREENBERG: Who from CDC was on the planning committee or on the planning meeting?
DR. MCDONALD: Yes.
MS. GREENBERG: Well, the chief of the executive secretary for the HISS board, Gib Parrish[?], Denise Cou[?]. There was some immunization input. Who else from the CDC?
DR. MCDONALD: I just do not hear any worker bees. I do not hear any worker bees. I mean, I do not mean that they are not worker bees - people who have really been involved in this.
MS. GREENBERG: Well, part of what you have to understand is that this is only a launching meeting that obviously these are not going to be the only people who are going to be involved in the actual process that is initiated, and some groups may not be able to attend, but they are still going to want to be part of what comes out of the meeting. So we have tried our best to - and then we have ASCO and we have all those ASPEDs[?] and CSTE and those various groups. NADO[?] was on the planning group. Dan represented NAFIS[?]. We had NUBC and NUCC there. We had, I think, some states that are on here. We had some Medicaid, both from HCFA and from state Medicaid. So we had a pretty varied group, but you can always obviously have more for the implementation.
DR. DETMER: Kathy?
MS. COLTIN: I was going to suggest that you need, I think, a little bit more representation from organizations where practicing physicians and caregivers are doing research. So like the American Group Practice Association is doing a lot of outcomes research. Julie Sanderson Austin[?] is a good contact for them.
MS. GREENBERG: You will have to give me the name.
MS. COLTIN: All right. Also, the Association of Community Health Plans, which is the new name of the HMO Group, they have a task order from the CDC and have been facilitating a lot of research in different member health plans.
MS. GREENBERG: Oh, all right. That was the THMOG, right?
MS. COLTIN: Its new name is - yes, THMOG, but it is now the Association of Community Health Plans.
MS. GREENBERG: Is Dan Wolfson[?] still with that?
MS. COLTIN: Yes.
MS. GREENBERG: Do they actually still have the same address and everything?
MS. COLTIN: Yes, they just changed the name, that is all.
MS. GREENBERG: Yes, thank you.
MS. COLTIN: In terms of health plans, I think you want to get a list of the members of the HMO Research Consortium. There are a number of other health plans that are members of that consortium, and those are health plans that have active research departments and do their own research as well as collaborate with external investigators who use their data for research, and most of the big ones are members of that. Prudential, for instance, in addition to what you have listed here, is a member of that consortium.
One that I do not believe is a member of that consortium that you might want to include is USQA, which is the research arm of Aetna U.S. Healthcare. It is a research and development arm.
DR. DETMER: John?
DR. LUMPKIN: Just a very brief word of caution. Given the diversity of the people who are coming, do not assume they know what EDI is. I found that in a lot of discussions. You may want to include at least somewhere, either in the presentations or the papers, EDI 101.
MS. GREENBERG: Yes, the background papers, I think, are supposed to have some of that.
DR. MOR: This is the 1 Washington Circle Hotel that I am familiar with. I do not know that it has a big enough room. I am not sure.
MS. GREENBERG: Well, it can hold 100.
DR. MOR: Well, it is a tight fit at 100.
MS. GREENBERG: Well, it will be cozy. We want these people to work together.
DR. MOR: It is a tight circle.
MS. GREENBERG: I mean, you all have suggested about 10 more groups. So, you know, we will -
DR. DETMER: Well, you asked us, right?
MS. GREENBERG: I asked you, exactly. We are meeting tomorrow with the Public Health Functions Workgroup in the Department. I have been asked to talk with them about it, although they are aware of it; several of the people on it have actually participated in the planning meeting, but, you know, it is sort of like if you have a dinner party, you are always worried that there will not be enough food, but then what if I have too much food? I mean, I am sort of feeling the same way here. I am both concerned that we will not get all the right people there, and then I am concerned that we will have too many people. So we will have to work this out, obviously, but I hear all of you.
DR. NEWACHECK: Marjorie, it looks like it is going to be a really interesting meeting, and these background papers look of interest, too, and I am wondering, can you make sure that those of us on the committee who are not going to be attending the meeting have access to the background papers?
MS. GREENBERG: Oh, sure. Sure.
DR. DETMER: All right, the other item that we did not have formally on our agenda but is in our book, and I would like to have Marjorie speak to it briefly, is Tab I.
MS. GREENBERG: Right. Actually, Susan, maybe you - thank you for mentioning that. This is the annual report, and we have brought this to you. There was a general agreement about doing this report - is not an annual report anymore. It is a report for kind of mid-1996 through 1998, and Susan has taken your - we have contracted with Susan to prepare the report, and she has taken your past recommendations, et cetera, and has come up with an outline of what she is proposing the format of the report be, and definitely we want your comments on this, because we are really - start working on the report.
Susan, do you want to just walk them through what you are proposing here?
MS. KANAAN: I would just encourage you to read the footnotes, as well as the outline, because there is important information there. There is a structure here that was taken from conceptual work that Lisa and Kathy did, and it is important to make sure that everyone is comfortable with that structure. I think that the items within the structure are probably fairly obvious. If I have missed anything or if there is anything there that you would like to have framed differently, that is important, too.
DR. DETMER: Comments?
DR. MOR: I like it. I looked it over, and it seems quite reasonable. I like the structure. I thought it was reminiscent of something. I did not recognize it, but I like it. It makes sense.
DR. DETMER: Others?
MS. KANAAN: It is basically - although this is in a footnote - it is basically going to cover much of 1996, as well as - we originally talked about it in terms of 1997 and 1998, but in fact we need to cover quite a bit about 1996, too. So it is going to be a lot of material. It may prove to be too much to really fit into 20 pages, which was initially what the Executive Committee wanted it to be, but it may have to grow a little.
MS. GREENBERG: I think unlike previous reports, where we have put a lot of the report, the actual recommendation reports the committee had submitted to the Department in the appendix, the plan here is to really reference them all as being on the Web site, which will keep the document smaller, though we did have a question about - and that is, I think, footnoted here - but we had talked about putting the document if it actually was approved by the committee today, putting it in its totality in the report, I guess as - at one point we had talked about it as being the - it would not really be the forward, because the forward would be something that would come directly from Don, but probably as an appendix. We do not have to decide today, but your feeling on that would be appreciated.
DR. LUMPKIN: I think that that is a good idea for the document that is released. I just hope that somewhere we put together a report where all the supplemental documents are actually there, because we are always making the assumption that Web page is - what we have on the Web page is available, and at least with the archival copies we should have a full document.
MS. GREENBERG: Well, I guess I have had mixed feelings about this, although I am trying to come into the new age, but I, for one, refer to the - and would send out when people request them - refer to the former annual reports, which we literally have them going back to 1949, although I was not involved in the early ones, but I refer to them particularly for the reports that are included in the appendices, but at the same - and we will have, obviously - I mean, we have all those reports, and we could actually try to at least not publish but put together, make sure we have together in one place, if somebody wants them, but I think people felt that, particularly with all the output this committee has had, I guess, although it has not all been in reports - a lot of it has been in letters; we did not usually put letters in - that it would get a little voluminous.
So do others have the concern that John has?
DR. DETMER: Clem?
DR. MCDONALD: No, it is not the same concern. It is just kind of some of discomfort with the balance. I kind of look at it like apples and motorcycles.
[Laughter.]
For example, under privacy and confidentiality, you list all the issues, including caveats about unique identifier. Well, if you are ever going to do anything with public health data, you want to have good things about the health identifier. I mean, we need to say those things somewhere, and they were said, and under the standards policy, the issues about the provider identifier is not mentioned, and that actually is one of the main hits -
MS. GREENBERG: About what?
DR. MCDONALD: Provider identifier. I mean, so some of the key - it just does not look balanced right. You do not have the same - there are different categories of things under different headers that do not necessarily -
MS. GREENBERG: You know, there is a separate report that the committee does on HIPAA every year, and the first one was - well, we talked about that yesterday, about the second one. I guess we talked about it in the subcommittee. Because that report will be summarized - I mean, the summary points will be made here, and so I would think provider identifier would be addressed. I mean, we will at least mention what the HIPAA mandate standards are, and that is one of them, and the recommendations that were made by the committee, but probably with a reference to that report, to that HIPAA report.
DR. MCDONALD: Well, the headers tell the story in a report, and these headers do not tell the story.
DR. DETMER: Maybe you could talk with Susan and that would be helpful. So at least it will all look like Harleys and Hondas or Delicious and Winesaps.
DR. MCDONALD: Well, what we did this year - those are big things that we did, and they are not showing up as headers, like getting the provider. Maybe that was last year. So maybe it does not count.
DR. MOR: No, but last year's would be included, as well, but I just assumed that was under the HIPAA standards.
MS. KANAAN: That was my assumption, too. Just to go back to what Marjorie said, number 2 under Roman III number B, you know, that sort of fans out into its own outline really because of this other report. I hear what you are saying.
DR. MCDONALD: You do not see that if I were to look at this, a third of it is going to be about privacy, a tenth of it is going to be about HIPAA standards.
MS. KANAAN: That is why we have a footnote.
DR. FITZMAURICE: Maybe there should be a page referencing all that was accomplished here by HIPAA, and then referring them to the HIPAA report, but a page that recognizes just what Clem is talking about, provider identifier - we gave a lot of good advice.
MS. KANAAN: That would be in the appendix.
DR. STARFIELD: I would urge that we hear Clem in terms of the way we word these things. I mean, we could say issues about the unique identifier instead of caveat. I guess the positive instead -
DR. MCDONALD: Unique identifier issues.
DR. STARFIELD: Yes, right, unique identifier issues as opposed to -
MS. KANAAN: That means under standards policy there should actually be a -
DR. STARFIELD: No.
DR. MCDONALD: Where are we really putting the energy in this report and where are we putting the pages and what paragraphs and, you know, where is the page space going and where are the headers going? So if this thing really reflects the content of the report, the emphasis I do not think is quite right. I mean, there needs to be equal emphasis on some other issues. If this is just sort of a once it is fanned out it is going to be a different shape, sort of like the thumb is real big on the brain, you know, that is just -
MS. KANAAN: Yes, I do not think this reflects - there is not going to be equal print given to each of these items, but I would be glad to get a suggested outline, let's say under B, where you feel that it is not fleshed out enough or detailed enough.
DR. DETMER: Yes, Simon?
DR. COHN: I am, I think, resonating a little bit with Clem's comments here, and I am actually wondering whether the paper that we just approved on the National Health Information Infrastructure, which is, I think, going to be reproduced fully here, ought to be sort of the template for that section. There is a piece that has directly to do with the National Health Infrastructure, and then there is a piece that I think is really around information policy work that we have done, and for that piece that is around standards and all these other pieces, I think somehow having that sort of interpolate or be directly linked to that might be a little more powerful and make a little more sense.
I do not know. Clem, does that satisfy what you are thinking about any more?
DR. MCDONALD: Well, it is a hard thing to couch. I mean, I sympathize with your challenge.
MS. GREENBERG: At one point we had talked about that paper that was approved today as being a template for everything under the committee, but that was rejected.
DR. COHN: Well, this does not cover everything, but it covers certainly a large area, or a particular area anyway.
MS. GREENBERG: And you are suggesting?
DR. COHN: Well, I am suggesting that that really be sort of the centerpiece and sort of the template for that major piece and that it - I guess I am looking at this -
MS. GREENBERG: Yes, it could be referenced and then flow out from that and then still attach the whole thing - I mean still include the actual paper. Was there an agreement that the actual paper should be included in the published report?
DR. COHN: Oh, yes, I am sorry. I thought that that had already been discussed. I thought that was -
MS. KANAAN: I do not think that decision has been made, but it would be -
DR. COHN: Oh, I am sorry. I heard that and thought it was an agreement.
MS. KANAAN: It would be actually helpful to me if you would make that decision today. It is not necessary, but of course that will affect how I write the section on the NIAI[?] papers. So if you are ready to make a decision about that -
DR. DETMER: What is your pleasure, folks?
PARTIPICANTS: Include it.
MS. KANAAN: Okay, I think your suggestion to use it in perhaps a more creative way than just sticking it on as an appendix is a good one and that it does provide a structure and a sort of conceptual framework. So I will try to pursue that idea. If you have more specific ideas, maybe you could get in touch with me.
DR. COHN: Okay, I will try.
MS. KANAAN: Thanks.
MS. GREENBERG: That works out well, since Susan was our primary author with John on that.
DR. DETMER: She did a splendid job.
DR. COHN: That does work then, doesn't it?
DR. DETMER: Other comments? Barbara?
DR. STARFIELD: Well, I sort of do not know the rationale for separating out each of these items are. Take, for example, the population-based and population-specific data issues. This is supposed to go through December, 1998. We have a new charge for that committee. There are some things in that charge that are not represented in here. So I -
MS. KANAAN: Are not represented?
DR. STARFIELD: Yes, right. So I think we have to know what the rationale for picking out something specifically is.
MS. KANAAN: Everything should be included.
DR. STARFIELD: Yes, well, it is not.
MS. KANAAN: So if things are missing, then I will add them.
DR. DETMER: Well, get those to her.
MS. GREENBERG: Yes, send emails to Susan.
MS. KANAAN: Everything where there was action or reports or anything should be included in the report.
MS. GREENBERG: Well, for example, the letter, that will be at least referenced. I mean, the letter will not be in the report, but the letter that you approved today on the Children's Health Insurance Plan will be - this is going to be through 1998. So actions actually from the November meeting will be here, as well.
DR. STARFIELD: Well, it also depends on what you mean by an action. You know, we have not had a lot of action on the post-acute care continuum of care, but we have paved the way for action.
MS. GREENBERG: Well, you have had a meeting. I mean, you do not have to have made a recommendation.
DR. STARFIELD: But that is the point, you know, what qualifies as something accomplished.
MS. KANAAN: Bear in mind that at this point we are only talking about a paragraph or two in each of these areas unless you really -
DR. DETMER: It is fine. Just activities.
MS. KANAAN: Unless you really want to mandate a longer report, we are not going to say too much about any of these areas. It also becomes a road map, or in part it is a road map, to what is on the Web.
MS. GREENBERG: Which does raise the issue that John mentioned.
DR. DETMER: I think John makes a good point that we ought to try to at least maybe have one place where some of that is, not for this report, per se, but it would be nice to have a master of all of these things.
MS. GREENBERG: Probably not something that we are going to go ahead and print.
MS. KANAAN: Yes, like a binder.
DR. DETMER: That is what I am saying. Something. I mean, in desktop printing right now, it is mostly a matter of pulling the stuff together and -
MS. KANAAN: It could be in a binder or something.
DR. DETMER: All right, that is helpful. Thank you.
I think our last item is future meeting dates and agendas, and I think we do need to both talk dates, which I think are in our book, but also a little bit about agenda, and it may take a few minutes to - since these dates - just a comment first - since these dates were set, I will be in Beijing on the 12th and Hanoi the 13th. So it looks like John or somebody will end up chairing that. But I think the trouble is we have so many difficulties actually finding dates, and I think if we have most of us on that date, we probably ought to stay there.
Now, apparently, February also still looks pretty good for the group. Can we see a show of hands on who that is not okay for? Well, let's look at November, too, just see. I mean, if it turns out that we have a bad situation - 12, 13.
PARTICIPANT: Well, why don't we just meet in Beijing?
[Laughter.]
DR. DETMER: Well, some might suggest I come here and they go to Beijing. They did not say Hanoi, however.
Okay, the dates are not all around yet, or do you all have them? November 12 and 13, February 2 through 4, June 22 through 24, September 27 and 28, of 1999, obviously, to all those, and November 3 and 4, 1999. Now let's just sort of see from what we have how many people are having troubles with November.
DR. STARFIELD: I may have to leave early on the Friday.
DR. DETMER: Okay, other problems, or not? Because those dates have been set a while. They look pretty good. Not everybody is here.
DR. FRIEDMAN: It is fine with me. Those dates are fine with me, but if we have a subcommittee meeting the last week in October and the HIPAA workshop the following week, to me something has to give.
DR. DETMER: Move to Washington. Just move to Washington.
DR. FRIEDMAN: Well, I do not think the Commonwealth, neither the Commonwealth of Massachusetts nor my wife would appreciate that.
[Laughter.]
DR. DETMER: In that order.
MS. GREENBERG: There is an APHA[?] meeting, too.
DR. STARFIELD: I will probably have to leave early on the Thursday, not the Friday.
DR. DETMER: How about February? Does that still look decent?
DR. COHN: I think the only question is we have three days set up for that. Is that because one day was supposed to be for a unique patient identifier hearing, or are we just holding that?
MS. GREENBERG: No, I think it might be used by a subcommittee. We would need to decide by November.
DR. DETMER: Yes, we will keep those. We will see how it goes. We may not have - we are not committed to do a three-day meeting of this group.
DR. MOR: Which one of those three days is likely to be - I mean, which ones of those three days are likely to be the full committee meeting, as opposed to -
DR. DETMER: What day is Tuesday?
DR. MOR: The second is a Tuesday. The third is a Wednesday.
DR. DETMER: What is your preference, folks?
DR. MOR: I was actually going to propose Tuesday and Wednesday with the idea that for workgroups or may want to have hearings on the fourth and fifth potentially.
DR. DETMER: Okay, so 2 and 3. We will lean toward 2 and 3.
Then June? Problems?
DR. MOR: How does that crosswalk with HSR?
MS. GREENBERG: Well, it is not the same time. HSR is June 27 through 29, in Chicago.
DR. DETMER: All right, September?
DR. MOR: What does that do with the holidays? I do not have -
MS. GREENBERG: I look out for those.
DR. DETMER: November 3 and 4?
DR. MOR: I will be there - I can be there the third - probably not. I will be away. It is already set.
DR. DETMER: How many others of you have a problem at this point on that?
[No response.]
Well, it is looking pretty good otherwise, though.
DR. MOR: Yes, yes. I just have to be in the Netherlands.
DR. DETMER: No, I understand. Some folks are saying we should go to the Netherlands.
All right, that is dates. How about questions about agenda items? I mean, obviously we are not going to set the agenda for all of these, but the Executive Committee meets, and it is useful to get at least some thoughts from the full committee on what items - for example, issues of fraud and science base for some of these things came up. I mean, are there items like that that have come to our table the last couple of days or before you got here that you would like to sort of have us flag and start doing a little preliminary work on?
MR. BLAIR: Well, I think we are going to - with the CPR Workgroup - just from the work plan, we are going to have to have a lot of hearings during this next year. So, you know, I cannot tell you specifically which ones are going to be which times, but please keep us in mind as you start to schedule things so that we could tell you what we need.
DR. DETMER: All right.
DR. STARFIELD: I think the data needs for the objectives for the nation are going to be a big thing.
DR. DETMER: All right.
MS. GREENBERG: We need an update on that, yes. It was the Subcommittee on Standards and Security was talking about having something at the November meeting on immunization. We thought because of the issues you had raised about the organization, and we thought that would be of interest to the Population, as well. So we should have it at the full committee.
DR. DETMER: Yes, take a shot at that.
MR. SCANLON: Don, the National Library of Medicine is supporting a study at the National Academy of Sciences that is looking at the second generation Internet for health functions and purposes. The panel makeup will be set up by the next meeting, and maybe you ought to get a report to the full committee from them.
DR. DETMER: Similarly, there is a new round of quality activity at the IOM. Jack Corrigan[?] is now over there as deputy director, and they are starting another activity. So that might be worthwhile, too, by the time we get at least into the early part of the year, certainly.
Others?
DR. MOR: The Institutes of Medicine has a committee on quality and long-term care. I assume by February there should be something, although they may not want to talk about it until June.
DR. DETMER: But just this whole issue, it seems to me, looking at next year, having a little more focus on long-term care strikes me as a worthwhile thing. I mean, I think it is a sleeper issue really. I think it is, and it might be good to see if we could maybe look at a bit of a little thematic view of that or something.
MS. COLTIN: Don, I might suggest we expand that to post-acute care, short- or long-term.
DR. DETMER: All right, fine. Fine. That is fine. Well, that is actually what I had in mind. So that sounds good.
MS. GREENBERG: We should have more guidance from that from the Populations Subcommittee on that, because as the Medicaid managed care wraps up, that is, I know, an area of interest.
DR. FITZMAURICE: We may want to follow up with what Nancy Foster presented today with what is on the agenda of these new quality groups that are cropping up, maybe in February.
MS. GREENBERG: We had talked about, you know, when we had the panel on quality of data basically for doing quality assessment or performance measurement, et cetera, and then the next thing was to have a panel or have some kind of a full committee panel discussion or presentation on quality of care assessment, and we had talked about that possibly being at the November meeting. I take my cue here from Kathy and her group as to whether -
MS. COLTIN: Actually, we talked a little bit about that yesterday and thought that it would be better to push that off to the February meeting, because right now the priorities in the Populations Subcommittee are going to be to wrap up the work on Medicaid managed care, and it is the same individuals. We do not think we are going to be able to kick off much of the workgroup on quality effort until we finish wrapping up the Medicaid managed care work.
MS. GREENBERG: That is what I thought.
DR. MOR: At least from my vantage point, it might make sense to begin planning and thinking about getting some testimonies and advice from people who have been doing data quality audits. Since so much of what we are talking about, whether it is for reimbursement purposes or quality or so on and so forth, the whole issue of how you do a data quality audit - are the data true? Do they reflect what really happened and do they reflect really what the patient looks like is key for risk adjustment, quality outcome measurement, or what have you. I know HCFA is just going through a process of audits on the HEDIS process, but that is sort of at a level of aggregation that might - I do not know how it was done - but that could be at a level of aggregation higher than the actual audit of individual records to see whether or not the automated data that is being used is actually reflective of the true situation. I do not know how that is done myself.
MS. GREENBERG: We have had some presentations. HCFA certainly -
MS. COLTIN: We had one from the IG office actually a couple of years ago.
MS. GREENBERG: Well, we have had two, though, in the last year by Paul Elstein[?] related to the HCFA, and then -
MS. COLTIN: Yes, related to HEDIS, but there have been other presentations that we have had over the years about other studies that have been done. I do not know about anything recent, though.
MS. GREENBERG: Well, other than the HEDIS and the I-PRO[?].
DR. DETMER: Other items, issues?
[No response.]
All right, unless there are any other items, I think we are ready for a motion to adjourn, unless I am mistaken.
DR. FRIEDMAN: So moved.
MS. WARD: Second.
DR. DETMER: Any discussion?
[No response.]
All in favor, say aye.
[Ayes.]
DR. DETMER: Opposed, abstentions?
[No response.]
DR. DETMER: All right, thanks, by the way. It was a good meeting. I appreciate everybody's work.
[Whereupon, at 2:55 p.m., the meeting was concluded.]