Washington Marriott Hotel
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Washington,
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Call to Order, Welcome, Introductions, Review of Agenda 1
Update from the Department and HHS Data Council - Jim Scanlon 7
HHS implementation of PL 104-191, Health Insurance Portability and Accountability Act of 1996
- Privacy component - John Fanning, ASPE 26
- Data standards component - Bill Braithwaite, ASPE 28
Discussion of Recommendations on Health Data Standards - Dr. Lumpkin 35
State-based Standards and Privacy Initiatives
- Elliot Stone, Massachusetts Health Data Consortium 63
- Walter G. Suarez, M.D., MPH, Minnesota Health Data Institute 72
- Rick Rubin, Foundation for Health Care Quality 88
DR. DETMER: I am Don Detmer, I chair the committee on Vital and Health Statistics. I am from the University of Virginia. We typically start by, in addition to a welcome, an early welcome to all of you on the committee as well as our guests here, we start by actually going around with introductions and I want to introduce myself actually, the newly-appointed Executive Secretary to this group and have us give her a hand. Marjorie Greenberg has served for Gail Fisher as the acting Executive Secretary for the past number of weeks and months.
I think it would also be very appropriate for this group to pass a commendation, a letter can draft, commending Gail for her work, at least half of the entire tenure was around this committee's life she has served as the Executive Secretary.
We think she may join us today and, if so, we will recognize her then but if not, we will make up a certificate and so forth and maybe at our next meeting, we can do that but I would be delighted to take a motion.
[Motion and second from the floor]
All in favor say aye. (Chorus of ayes.) Thank you very much. Then I will then let our Executive Secretary introduce herself and we will go on around and then through the audience as well.
DR. GREENBERG: I guess I should say I need no introduction. I am Marjorie Greenberg from the National Center for Health Statistics.
DR. GELLMAN: I am Bob Gellman. I am a privacy and information policy consultant in Washington and a member of the Committee.
DR. STARFIELD: I am Barbara Starfield from Johns Hopkins, a member of the committee.
MS. COLTIN: I am Kathy Coltin from Harvard Pilgrim Health Care in Boston, a member of the committee.
DR. HARDING: Richard Harding, a member of the committee, a child psychiatrist from South Carolina.
MR. BLAIR: Jeff Blair. I am with IBM Healthcare Solutions and also active on the american National Standard Institute's Health Care Informatics Standards Board.
MR. BRAITHWAITE: I am Bill Braithwaite with the Department of Health and Human Services and staff to the committee.
MR. SCANLON: I am Jim Scanlon, also with HHS and I am the Executive Staff Director of the Committee.
MR. FANNING: I am John Fanning in the Office of the Assistant Secretary for Planning and Evaluation and part of the staff of the committee.
DR. IEZZONI: Lisa Iezzoni, Beth Israel Deaconess Medical Center in Boston.
DR. LUMPKIN: John Lumpkin, director of the Illinois Department of Public Health.
MR. VAN AMBURG: George Van Amburg, Michigan Public Health Institute.
MS. WARD: Elizabeth Ward with the Washington State Department of Health.
DR. COHN: Simon Cohn, Clinical Information System Coordinator for Kaiser Permanente and a member of the committee.
MR. SMITH: Dave Smith with Health Care Financing Administration.
DR. SCHWARTZ: Harvey Schwartz with the Agency for Health Care Policy and Research.
DR. DETMER: We will head on back to the audience. I just want to remind all of us. We have an Internet feed today and I just got a note that in order for the feed to be fed, we need to speak right into the mike. We won't repeat that, they will be hearing from us as the day moves along but it is something to be important to them.
[Introductions of the audience.]
DR. DETMER: I think we are expecting Clem MacDonald as well. So I think we are pretty much having a full roster today.
We are meeting here, I believe, actually because they are redoing some of our space in the Humphrey Building, isn't that accurate? So this is a little bit of a new experience for us. I hope that you will be able to hear us, and if there are some problems with logistics, let us know. If we can try to do something about those, we will seek to do that.
We have quite an agenda, actually, to get through this meeting but I think it is going to be a terrific meeting in that regard because I think we are really going to move some issues. What I would like to do first is to see if, on tab E, are there any changes to our minutes? Because if not, if our March 13-14, if there are no changes, I would like a motion to approve those and if you do have some changes, we need to get those made. A motion to approve?
[Motion and second from the floor.] So hearing no objections then, we will consider those minutes approved.
I want to start by going down a little bit through our agenda and then we will get an update after that from the department and the data council on what has been happening in terms of implementation, particularly of K-2 but I just want to briefly review, mostly probably for members of the audience who may not be aware of the work that we have been doing over the past eight months as we come to a time to make some recommendations. Our subcommittee on data standards has held six days of public hearings in which we have heard from 77 witnesses as well as two additional days of combined public hearings in San Francisco where we heard from an additional 40 witnesses.
In addition, we heard from about 17 more witnesses during our two full committee days for a total of 134 individuals that have spoken to us. We recently developed an executive work plan for those on the committee. That is in tab F, and I think that was also a very useful thing that we got accomplished out at the San Francisco meeting.
We have an additional two days of hearings scheduled for this August on security standards. Security was one of the issues that we really had not spent enough time on, focusing principally more on data standards, on privacy and confidentiality and with the NRC report now out and such, we thought it was appropriate to spend more time on that so we will be having a couple of days hearing in August. Do we have the date set for that yet?
DR. GREENBERG: I believe it is August 5 through 7.
DR. DETMER: August 5, 6 and 7. Sounds like three days to me.
DR. LUMPKIN: A day and a half of hearings and day and a half of committee meeting.
DR. DETMER: Okay, great. In the area of health information privacy, the subcommittee on privacy and confidentiality has held six full days of public hearings during which we heard from 42 witnesses and we also benefitted from two additional days of public hearings in San Francisco where we heard from an additional 40 witnesses from across the health spectrum, including six representatives from the privacy and patient advocacy community.
So we have had actually you can always hear and benefit from hearing from more people, but I think we also certainly made an effort to not only get a lot of input here in Washington but to get out of the city as well to the other end of the country and find out what folks are thinking out there that maybe couldn't make this trip back.
Incidentally, I think that was worth the effort and I think all the committee that made that trip worked very hard but I think we got a lot accomplished and I think it was clearly worthwhile. The people seemed to be, if not more relaxed, maybe it is the California air but it did seem like there was a little less maybe posturing, maybe a little more candid give and take and I think it was quite useful.
What we want to do today and tomorrow is review the department's progress, as I said, on both the Kassenbaum-Kennedy legislation as well as OMB directive 15. We have three drafts today of letters that we want to make recommendations to the Secretary related to health data standards, privacy and confidentiality and state and community health statistics and we will have those mostly for discussion and later subcommittee work to integrate some of the things that come up in our open and full discussion so that we can move to action if at all possible tomorrow.
We also want to assist the panel on state-based standards, to assist us in this discussion. We have a panel on state-based standards and some privacy initiatives in the state. We think that that would be useful as well before the subcommittee meets and we come back for our action tomorrow.
We also will hear executive subcommittee reports and some discussion on planning and implementation and public education as well as scheduling future meetings before we adjourn so I think it is a fairly hefty agenda. My understanding is that Dave Garrison was actually on his way back form the West Coast so Jim is Dave and then we will hear also from John Fanning and Bill Braithwaite and then get into our work.
MR. SCANLON: Thank you all. Dave likes San Francisco, too, so he has actually remained there an extra day so he won't be here with us today. He sends his regrets but he wanted to bring the committee up on some of the work that is going on in HHS and the data council activities as well.
The data council, as you know from previous meetings, serves as the department's internal body for data policy and privacy issues. It advises the Secretary on data policy issues, it provides a forum within HHS for the development of data policy across the department and it supports integrated and cohesive information strategy across the department.
As Don indicated, the council is the department focal point for the administrative simplification provisions of the HIPAA and it is particularly with respect of the privacy recommendations. The Congress, which John will tell you about in a few minutes, as well as the standards activity which Bill will tell you about as well.
Now, Dave this morning, I think, rather than go into what Bill and John will be reporting, I think he wanted to bring you up to date on a couple of other activities relating to HHS data collection strategy and some applications in the health information infrastructure and where the department is and the data council on that and basically leave to John and to Bill the updates on privacy and health data standards.
You will remember when Dave spoke to us in March that he indicated that the department and the data council have a work plan that basically focuses on six major themes. Let me just briefly remind you of those and then I will just focus on the two that Dave would have wanted this morning.
First of all, the data council has the responsibility within HHS for developing and overseeing departmental data collection strategy including the survey integration plan and a number of other data collection activities and I will tell you where we are on some of those activities in a minute.
Obviously, the other, one of the other major areas is the area of health data standards and you are familiar with some of the developments there as well as the third major area which is health information privacy and you will hear more as well.
The three other areas, though, the themes in the data council's work plan, relate to other areas. The area that I will mention a little more this morning deals with the whole area of health information applications and the national information infrastructure. This is what the Vice President refers to as the information superhighway. This is the network of telecommunications and computers and related electronic infrastructure that supports much of the telecommunications and computer work in the country and there are, in many ways, some of the applications of that infrastructure in the area of health care are among the more glamorous, particularly in medicine and diagnoses but in terms of public health and other areas, it seems that all the benefits of that infrastructure have yet to reach public health in some other areas so the department is trying to look at what could be done there as well as in the area of consumer, improving consumer information over the Internet.
So I will talk a little bit more about that in a minute. Two other areas as part of the data council's work plan, obviously the data council serves as the focal point for relationships with this committee and I think the relationships is becoming stronger. Don attends the meetings of the data council on a monthly basis, and the final area, the data council tries to serve as a forum within HHS for coordinating positions of a departmental nature for more or less ad hoc issues that come up and one of the areas that they are looking further into now were international relations, developments in the European community and some of the data policy issues that are arising there.
So let me first, let me spend the remainder of the time on the HHS data collection strategy and we can allow some time for questions and then on the information infrastructure applications in health.
The data council at HHS is responsible for coordinating and developing and overseeing overall HHS data collection strategy. That is obviously quite a challenge in an agency like HHS with 10 big operating divisions, eight of which are in the health area. Each of those agencies have common missions in health but they also have different missions as well.
So one of the areas that the council uses to try to bring together some strategy is something that started this year, and it is the development of an HHS advance plan for surveys and major data collection activities. I will describe that in further detail in a minute.
The council is responsible for developing that multi-year plan. It would cover fiscal year 1997 all the way through 2001 I believe and it would include not just the plans for surveys and the general nature of the survey content and their periodicity but it would include budget planning information as well -- where is the money coming from and then in addition to that, the data council has this year been given the responsibility for looking at all the budgets that are being submitted by agencies across HHS to do sort of a data cross-cut, to look at all the data proposals, the various agency proposals and to look at what is there, what is not there and what makes sense for future investments.
The secondary data collection strategy has to deal with the HHS survey integration plan and I think you all have been briefed on the HHS survey integration plan and I will tell you a little bit more about it in a minute but that is one of the other major areas of HHS, data collection strategy.
A third area of data collection strategy has to do with what was developed last year in this term, the HHS research planning initiative. This is really an effort to try to insure that HHS has the capacity with foundations, with academics, and state governments to be able to monitor the impact of transformations and health and welfare in other areas across the nation and in local government.
A fourth area has to do with strategies for state level data. This is an area where there is a lot of work needed, a lot of rethinking is going on and I will say a little bit further in a minute.
The fifth area has to do more with special populations. The department is looking at a number of issues and policies in the area of race and ethnicity data in connection with the census, in connection with OMB's review of directive 15 and other areas as well.
Let me tell you just a little bit more about each of those and we can stop there and answer questions. The HHS advance plan for surveys that I indicated was being developed this year is intended to include all of the major surveys as well as all of the major data collection activities that are proposed by HHS agencies over the next roughly five years into the future. Associated with the surveys themselves and the plans, and here we would include surveys whether they are in the planning stage, the data collection stage or the analytic phase as well.
Associated with the actual plans for the surveys we would have multi-year budget planning information so hopefully we wouldn't be surprised by a large survey need or data need that is unfunded. We will be looking also at whether there is any duplication, whether there is unintended overlap and whether opportunities for consolidation or integration as well.
There is some basic information included about each of the surveys. There is information included about the race ethnicity data and the geographic detail that would be available from each of the surveys. That is still under development but I think we will probably have it finished in about two weeks and I think it will be made available on the HHS website. Not the budget information, just the survey planning information.
The second area I mentioned was really something the council has gotten involved in a little bit last year but this is sort of essential for an agency like HHS. All of the agencies within HHS are very interested in data. Some of them are research agencies, some of them are regulatory, some of them are surveillance, so they all have fairly big data collection and data analysis investments and portfolios in their budgets.
Our agencies are now at the stage where they are developing plans for the fiscal year 1999 budget, and what the data council is doing is looking at what is being proposed and doing in essence sort of a department-wide cross-cut of what is, both what is included in the budgets and what is not included. Are there any major data gaps of an interagency nature that no one has come forward with and that we know will be coming or that are needed.
So hopefully, both from this top down and bottom up approach we will have a more complete portfolio of investments to propose in the budget process. The council will make its recommendations to our department-wide budget review board in this area and then to the Secretary in July so the budget process actually moves fairly quickly.
Let me say a few words now about the survey integration plan. I think most of you have been briefed on this. Just to remind you, the survey integration plan was a plan to bring together all the major recurring surveys in HHS into a coordinated strategy and framework and it addresses also major data gaps that were identified during the health reform initiative where when people did need information and analyses, sometimes we had the information, other times we didn't so based on that experience, it gave rise to the data, the survey integration plan.
The major feature of the survey integration plan includes the concept of a national health interview survey as a hub for other population surveys within HHS. You will recall that last year we initiated the medical expenditure panel study which will now be in the field virtually all of the time relating to health expenditures and the United States in health insurance coverage or beginning to see the fruit of that effort, we actually have some estimates, preliminary estimates from the MEPS that was begun last year, and we can even get some estimates for child health insurance coverage for example.
You have been briefed on the details of the survey plan. Let me only say that the national health and nutrition examination survey, another major component, will be going into the field in 1998, again as related in sampling frame to the health interview survey. The other area, particularly for the committee's attention, in HHS we have begun rethinking really and reconceptualizing the whole area provider data, resource data, capacity data, particularly in terms of the changing nature and structure and functioning of the health care system.
I think we are really looking at the question of, given these changes and function and structure in health care, what kind of information for the future do people really believe they need and how do our surveys and inventories and data systems stack up against that. We are not only looking at what data systems exist in HHS but what data systems and data sources might exist in associations, in professional associations, state and local governments and others so it is really meant to be a partnership. It is in very early stages and I think we really want to have the committee involved in helping us rethink this area as well.
We are not stopping any of our provider surveys or inventories at the moment but we really need to rethink them in teams of the changing structure.
Now, in even in definitions of what is the entities, the definitions of the health care entities that used to exist, really don't hold up anymore so hopefully the committee can help us with that.
Just a couple more things. The research planning initiative was an effort begun last year within HHS. It was associated closely with the welfare reform effort, and you remember last year that there was a strong effort to revise the Medicaid program as well in terms of the block grant so the department working with foundations and others really thought it was time to take a step back and look at does the capacity exist for the nation to be able to monitor, to describe and monitor these changes that would be occurring through devolution and through reformed efforts both in the health care area and in the welfare reform area.
The emphasis here is particularly at the state level since a lot of the devolution gives responsibilities to the states to carry out these programs but does the nation have the capacity to measure what the impact of these changes is. That is a very tall order and it is going to take some time.
The department sponsored a workshop at the National Academy of Sciences last December where people were brought together to help think through this issue and we will be sponsoring as a second phase probably in the fall and again we will invite the committee's involvement and others, sort of a national research and data conference on what has advanced so far and what are the remaining issues in this area.
And then let me talk a bit about strategies for state level data. I know you are all interested here. The department has begun looking at various strategies for developing state level data and, as you know, there are as many different approaches to developing state level data as there are national level data so the department has begun looking at different approaches for state level data.
This would include, number one, for example, allowing states to buy into some of our national surveys like the National Health Interview Survey as one approach. Secondly, there is an approach of augmenting some of our national surveys in selected states with larger sample sizes. In the drug abuse area, for example, the department increased samples in two states, Arizona and California, to be able to provide state estimates on substance abuse. Those were associated with the reform initiatives in those states, the legalized medical use of marijuana so there is an ability now to track what happens in those two states.
One of the more exciting efforts in the states, the area is something I think George Van Amburg has helped us with and worked on. It is what is called the state and local area integrated telephone survey system. This is a capacity that we are developing at HHS at the National Center for Health Statistics to be able to conduct state telephone surveys, centrally administered state telephone surveys. They can be done fairly quickly and the questionnaire content is largely based on modules from the health area and from the welfare area, from the child well being area, and, of course, the insurance and other areas, so that they can really be tailored in terms of content for, to meet a state's need or the national need for various information.
A final area in the data collection strategy involves the area of race and ethnicity data which the committee obviously is already well involved in. We have an HHS, under the data council, a working group on race and ethnicity data. The group is reviewing all the previous recommendations that have been made to improve race and ethnicity data to identify any remaining issues and where the recommendations are and to try to bring us forward from there.
The workgroup also serves as our focal point for the review and involvement with the OMB, OMB's potential revision of directive 15 which includes the standard categories for use in race and ethnicity reporting and all federal programs.
Let me go briefly to the health information infrastructure area and then I will close and turn it over to Bill.
DR. DETMER: Before you, let me, before you move to that, let me ask if anybody wants to ask a question or comment. Barbara?
DR. STARFIELD: One question about this survey integrations, Hortensia and I were at a meeting for planning of the NHANES and we heard that there really wasn't much input of NIDA and SAHMSA in that survey and probably in a lot of the other surveys as well. Do you have a comment about that as a particular challenge and is that something maybe this committee could help with?
MR. SCANLON: Well, I mean, ultimately NIDA and SAHMSA should be as much included, mental health should be included as much as anyone. There is, as you know, some of you, there, for whatever reason historically, surveys in mental health and substance abuse have kind of grown up along a separate track than some of the other surveys so there are surveys of households on substance abuse and other areas.
But I think in the survey in the plan, the idea is to help to see to what extent these could be brought together so I hope in the future, at least, Barbara, we can get those agencies involved.
DR. DETMER: I don't want to take words out of Dr. Iezzoni's mouth, but the group there yesterday had an excellent meeting on population specific issues and among the things we are not only looking at interfaces with the states but also emerging issues so I think we are going to want you, obviously this is going to be a big piece of our work plan in the coming year and I think we will want to interface with you on some of the items that Dr. Starfield raised as well as others. Why don't you move on.
MR. SCANLON: Two minutes now on the information infrastructure and how it could be applied to the health area. The data council was given a charge from the Vice President's office to lead interagency efforts in four areas and two of them are quite familiar to you -- data standards and privacy, of course, and I won't go into those but the two other areas were, and this is the Vice President's office asking HHS to kind of bring together all the other federal agencies in two areas.
One was telemedicine. Are there ways that we could move forward in the area of telemedicine, and what we have done is formed an interagency, a joint working group on telemedicine that serves as a forum across all the agencies including DOD and NASA and others that have fairly sizeable investments in telemedicine to begin looking at some issues that may be impediments or may be barriers to telemedicine and there are a number of interesting activities underway.
Among other things, they are looking at are there any regulatory barriers to telemedicine. Are there any barriers with respect to state credentialling and licensing for health professions that may impede the development of telemedicine? HHS is also sponsoring, with HCFA, a couple of demonstration projects to look at health care utilization under some telemedicine demonstrations. They are also looking at how you evaluate the costs and benefits of telemedicine and they are developing an inventory of various telemedicine efforts at the federal and ultimately at the state level.
So the work group has been very active. They have set up on our website now this inventory, an interactive inventory of telemedicine projects so they are moving along pretty well.
In the area of consumer health information, and here the reference is to computer based and network based health information for consumers. There are a number, in a number of the agencies there are activities underway, I mean, in fact, places like NIH and CDC have been developing consumer health information for a long time now. There is now a move to put much of this information on websites and other sources and, of course, it is very difficult. There are literally thousands of pieces of information so the Vice President's office asked HHS to begin to pull together some sort of a gateway, some sort of a search engine, some way of bringing this together in a more meaningful way and last month, HHS announced a project called Health Finder which is a new electronic young gateway designed to help consumers get reliable health information over the Internet in a fast and user-friendly way.
Health Finder contains links to over 500 on-line documents and more than 550 sites on the worldwide web, including not just federal sites but 350 sites drawn from the best of state, local, nonprofit, and other information sources. Again, the focus here is on information for consumers, health information for consumers.
There are a number of other activities underway in the consumer health information area, including an annual conference with the private sector on networked consumer health information, some research and evaluation activity and policy development and coordination activity so I have taken probably more time than I should have this morning. Let me stop there and see if there are other questions.
DR. DETMER: Are there questions?
DR. SCHWARTZ: Jim, on the evaluation of telemedicine, is the department focused on the medical effective use of telemedicine and patient outcomes or is this an evaluation with respect to utilization of telemedicine?
MR. SCANLON: In the HCFA demonstrations, and Dave could probably tell you more than this, the focus there is on to what extent is health care use, what is the experience with health care use, and there is always an interest on outcomes as well obviously but the major focus there is on health care use and other aspects of telemedicine. But the broader evaluation focus, here the working group is trying to develop evaluation tools that could look at outcomes as well, how well does telemedicine do versus other approaches and again the benefit cost issue.
DR. SCHWARTZ: So such things as random control trials, those with telemedicine and those without, is that part of the evaluation plan?
MR. SCANLON: It is not the way HCFA, I think HCFA is, it is not the way HCFA is approaching that evaluation, no. I think it is more when you do it, this is a typical demonstration actually, when you do allow a certain coverage, what happens to health care use and expenditures under sort of fairly controlled program conditions.
But the broader focus on evaluation research I think there is no limit there. I think there they would like to develop methodology. I think they realize, the work group realizes that one of the big questions about telemedicine is what is the boundary and what is the effectiveness compared to other, and the outcomes compared to other methods so they are still developing methodology.
DR. DETMER: I am obviously very appreciating of the interest in the White House and department on telemedicine and consumer information, but and obviously we are working with standards and so forth but my assessment really, where the country is on the H part, the health part of the NII is that it is not a comprehensive strategy at the present time. It is a bunch of little Hes. This H and that H, telemedicine consumers.
I think really what the country could benefit from, if health is to be a really solid chunk of the NII, it is a more robust, comprehensive strategy and I think that we, this group could play its piece perhaps, I mean, clearly we are doing that in part with the standards issues but at least my own assessment of running down through this and some other groups have worried this issue as well, we do have a strategy talking about universal access to libraries and schools but not to peoples' homes and increasingly with an elder society, with a lot of disability and so forth, the idea of really being able to have every American be able to get access to these kinds of health resources, communication resources, I think is a target. It is a marker that can be up there as part of this comprehensive strategy.
Tele-education relates to that, obviously just not just consumer education but health professions and others. A major area I think of computer based records of different types, health records, population type records for state use and others as well as personal as well as patient care, decision support. Recently the long range planning committee at the national library, at least looking at its international initiatives and discussions and increasingly realizing that the growth of the knowledge base is such that we need new ways of trying to even keep the scholarly community, the practice as well as the academic groups up to date on essentially what is happening on the data and how good is it, how relevant is it. What rules of evidence could be brought to support that.
I mentioned standards but clearly some of them are our standards but there are regulations; otherwise, as you pointed out, they can actually slow these things up in the intersections of a complex government and not to mention international pieces, how do we relate to whether it is privacy or security issues but the whole host of those. Increasingly it is a global culture at one level and how do we play our role as a partner which is actually a matter of enlightened, really, self-interest. It is not a matter of being good to the rest of the world. There is so many things happening out there that we are going to get lost in the shuffle if we, in fact, don't find ourselves as a partner looking forward.
I just want to put that on the table a little bit. I am glad that obviously there is interactions there but it could be nice if we could maybe look at a more robust strategy with other folks and perhaps play a role in some of that.
Were you finished then with your thoughts? Let's move on to John Fanning.
MR. FANNING: I have two items. One is a brief report on progress on the development of our recommendations for health record confidentiality protection and the other is a report on a recent report.
First of all, as people know, the Secretary must deliver to the Congress by August 21 recommendations for the protection for health information and we are drafting that. We have a draft that we have circulated in the department. We are eagerly awaiting the recommendations and the report of this committee to feed into that process and will carefully consider them as we redo, continue to work on this draft next week. Eventually we will go to our data council on July 9, and we will then go to the Secretary for briefing and for the resolution of any pending issues. So that is what is happening in that area and we are very appreciative of the work of this committee and its confidentiality subcommittee for the very excellent hearings, the record of which provides very helpful background for us. We look forward to the report.
The other item I would like to point out is that the department commissioned a report on privacy and health research and I will provide copies to the committee tomorrow for people in the public who want, when we do have a limited number to give out so if people would give me their cards and write on the back privacy and health research, it is also available on our data council website.
This was a study to examine, in a sort of broach brush, comprehensive way, the issues surrounding use of information for research and privacy with special attention to international developments like the effect of the European Union privacy directive which requires the member states after I think a year from this October to have legislation preventing the export of personal data to countries which do not have adequate privacy protection. This can be something of an issue in international studies and in the work of pharmaceutical companies which do massive studies with data from many countries.
So the report is a useful analysis of the subject and I will give you all copies tomorrow and I commend it to your attention. That is what I have.
DR. DETMER: Questions or comments for John? We will be getting into a discussion of this issue obviously in depth later. Bill?
MR. BRAITHWAITE: Thank you, Don. The data council heard from the implementation teams that are working on coming up with regulations to specify the standards as required by the K-2 legislation. On the 11th of this month, each team presented their current, the results of their current research and the positions that they expect to take when they go public with this.
We are having a public meeting on July 9 at the Natcher Center at NIH and at that meeting the co-chairs of the implementation teams will present this information to the public and we are trying to do this in a sort of open consensus building process manner. This is before the draft regulations are even written for most of these things so we are looking for feedback from the public about the positions that we are taking on these proposed standards and hoping to get enough feedback that when we do write the proposed regulations, the amount of feedback we get is more to the point and fine tuning the regulations.
As you know, the time schedule for this is tight. IN order to get the final rules issued in February which is required by law, we have to publish the draft regulations in October and then take public comment for two months, that is, until December and then, of course, it takes a couple of months to run the final results through the department.
If we issue the final regulations in October, that means we have to get department clearance in September which means we have to have all the decisions made the month before that. That is next month. So we are very thankful for the NCVHS for holding the hearings that you have held. The testimony was very helpful to the department in coming up with our conclusions about what standards should be adopted for industry-wide use and we are looking forward very much to the formal written recommendations from this committee to put into this process as early as we can in the drafting of these regulations.
I can do this in a very short period of time. I will go into more detail in the breakout sessions this afternoon but basically the department's position on the 10 transactions required by law is that we are going to recommend using the NC-X-12-N version 3070 standards for all of the transactions with a couple of exceptions. The exceptions are in the claims area.
Dental claims, as you have heard in the testimony, are virtually 100 percent done, I am sorry, pharmacy claims are done 100 percent at the moment using NCPDP standards and we will be going along with that movement.
Dental claims will use the 837 as the dental industry supports that. Outpatient claims, the feedback we have been getting has been the X-12-A-37 standard is where they want to go but they need some wiggle room, they need some extra time or mechanisms to make that transition over a longer period of time and we are trying to find some way to accommodate that desire.
The institutional claims, there is a good deal of controversy at the moment. Several major associations have written to say that they want to stay with the current lat file, UB-92 mechanism of doing that so now other major organizations have said they want to move forward to the X-12 standards and we have not yet come up with a specific decision on that one yet.
And identifiers, there doesn't seem to be any controversy out there about the acceptance of the HCFA proposed standards for the national provider identifier and the national payer ID. Those, as you know, were developed by HCFA for HCFA's purposes in Medicare but have been and are being adapted for industry-wide use.
Employer identifier probably will be the employer identification number from the IRS. There is a question still outstanding about some duplications in that number that we have to deal with but that looks like what it is going to be and the individual identifier, as you all know, is on hold for further discussions and reports that we are awaiting from this committee.
In the coding area, the decisions based on our input, including from the testimonies from this committee were that the replacement for diagnostic coding, the ICD-10-CM coding system was not quite ready for prime time in the year 2000 so we will be recommending that we continue using ICD-9-CM in the year 2000 but warning everyone to write their systems in such a way that they can move to the ICD-10-CM n the year 2001 and there is a slight difference in the coding necessary for that and that writers of software ought to be prepared for that.
On the procedure side, likewise continuing with the current ICD-9, volume three and CPT-IV and HCPCs, multiple methods of coding, procedures depending on the source and the location of service but that people ought to expect that that will change in the year 2002 or 2003 and we are talking about coming up with an alternative single procedure coding system as a desired goal but there is virtually no agreement yet on exactly what that will be.
In the security area, standards in the security area are likely to be standards which are policy standards, that is, not technologically specific standards but general policies that ought to be in place for organizations to maintain the security of their systems that deal with these.
The low cost distribution mechanisms that we are required to come up with are being negotiated at the moment. We expect that full implementation guides for every one of these standards will be available for free on the Internet if our negotiations go forward as planned at the moment.
That is where we stand. We will talk more about these items in the subcommittee meeting break-up this afternoon. Any questions?
DR. DETMER: I just want to make one other brief comment. Obviously we are at a probably maybe the last of the quiet phase if it has been quiet. I am not sure that it has but at least I think the department has been working very hard on this legislation and so has the committee and so has the industry and so has the states. I really think everyone has really hitched it up and tried to really go at it and now we are kind of poised at this moment, before we literally leave port and hit the heavy water but in any event, I do want to thank also the cooperation and support that we have gotten from the department to do our work because obviously we would really be in even tougher straits otherwise. Lisa?
DR. IEZZONI: Thank you for your presentation. Some of us won't be able to be at that breakout session because we will be at other breakout sessions so can I just ask, will there be a procedure proposed for moving to a single procedure classification system? Will you be proposing a process for moving to that?
MR. BRAITHWAITE: I hope so, Lisa, but I am not sure whether we can reach consensus on that. Certainly if there were a statement from this committee to that effect, that would certainly help move us in that direction.
DR. DETMER: Okay, I think at this point it is a nice segue into our next item which is discussion and recommendations on health data standards and to set the stage for John Lumpkin and also George Van Amburg, what I would like to do is just summarize what I see at least we need to do immediately in this.
We had intended to get the letter to the Secretary on the unique provider identifier, actually and just essentially announce that that had been done at this meeting. There was at least one committee member who was wondering a little bit about the alpha-numeric and the 10-digit numeric issue so we decided to not send that letter so that is one thing I would like to see us discuss that John will raise.
That is in your item tab G and if I am not mistaken, actually, I think the draft that is in their books, Bill, Dr. Braithwaite, is not actually the final. We have a more current version so we will pass that around.
The second one has to do with some other transaction standards that Dr. Lumpkin will present and then George has some recommendations on community health assessment, the role of state health agencies and the role of the Federal Government, and I would like to see us also do that if we could and talk through that as a piece of really unfinished business that has been on the table for some time that I think also deserves some attention and what we want to do is just get these out on the table, see if there is any questions or comments. The committees then, the subcommittees will be able to talk through some of those and will reach closure on those tomorrow unless we are totally satisfied today. Dr. Lumpkin?
DR. LUMPKIN: Good morning. It has been a long and arduous journey. I only say that because having made an excursion to southern Illinois yesterday and travelled back to Chicago and then out to Washington, it has been a long and arduous journey to be here. But while we have had fun as a committee getting to this particular point of making recommendations in relationship to administrative simplification.
As was mentioned earlier, we have had fairly extensive hearings over the last, it has been less that 12 months, hasn't it? It seems like it has been a long, long, long time. But during that period of time we have worked very closely with a number of the department committees. They have provided really very useful staff work. I think we have been able to pull some of their deliberations into the work of the committee and their hearings and so would like to present a draft proposal of what we would communicate.
That proposal really echoes fairly much of what Bill Braithwaite just went through in his summary.
What we heard a lot from, in our hearings, really focused in on using those standards that are currently being developed by the standard development organizations. In a document that you received last night, some of you may have received in your office yesterday entitled National Committee on Vital and Health Statistics, Subcommittee on Data Needs, Standards and Security Background Material.
In that document, I would call your attention to the opening section which is really three pages, actually four, and the following appendix. If you look in Appendix A, Appendix A is a list of potential transactions supporting standards. In our process I think it is fair to say that we have heard or seen documentation in relationship to every single one of these standards. There was some, I think, very, extremely helpful work by the NC-HIBS in putting together a compendium that allowed us to identify those. We developed and refined through our hearing process, I think, our questions that we began were very broad and we became very focused.
When we tried to nail people down as to what they were in support of, by and large we heard overwhelming support for the NCX-12 standards. And so our recommendations which would be those that you can see on page three of the document were the transaction standards that we heard broad support for all of the NCX-12 standards, the standards for transmission of all 10 administrative and financial transactions in HIPAA with two exceptions that Bill mentioned.
One is the NCPDP version 3.2 and the second would be to allow trading partners for a period of time up until, let me do this. We kind of worked out a letter. I think we are ready to perhaps pass that out as a straw letter for us to, the subcommittee has received the letter so if you are on the subcommittee you already have a copy of that. Jeff, that is the same letter I read to you this morning.
I will read this language that, the pertinent language of the letter. The NCVHS recommends that the Secretary adopt NCX-12 in version 3070 standards for transmission of all 10 administrative and financial transactions specified in HIPAA with two exceptions. The first exception we recommend NCPDP version 3.2 be adopted for pharmacy claims. We believe selection of NCPDP standards justify because pharmacy transactions already lead the industry in the use of single EDI standard and little would be gained at this time to force a change.
Although we recommend that all other claims should move to the NCX-12, 837 standard, as a second exception we recommend a strategy to ease the transition for providers and payers that currently rely on the older NSF or UB-92 flat file formats for electronic claim submissions. We have learned at the hearings that the financial health of providers is extremely sensitive to the timing of payments for claims submitted.
As a result, there is some fear in the industry that pushing the transition to the 837 too rapidly could lead to financial failures if payments were delayed because of technical problems during the conversion. We recommend that transition strategy whereby willing trading partners, by mutual agreement could continue to use the existing flat file mechanism, NSF, UB-82, to exchange claim transactions until February 2002. Strict adherence to section 1175 of HIPAA which forbids plans from refusing standard transactions or delaying payment on the grounds that a transaction is standard, will be expected and should be enforced.
For the transaction data content, the committee has had a longstanding history of recommendations in data content and we intend to review the data content that is now in the process of being developed by the HHS or data dictionary and that will be the content of our meeting, the day and a half meeting that we will have in August.
As far as supporting standards, in previous communications, almost previous communications, we endorse HCFA's NPI proposal for a unique identifier and at this time NCVHS would like to endorse the HCFA proposed payer ID as the national standard for a national payer ID. A recommendation on an individual identifier may follow as we try to review the various obvious choices -- not -- for the individual identifier.
The committee recommends that diagnosis procedure coding continue to use the current code sets because the appropriate updates will not be ready for implementation by February 2000. Specifically, ICD-9-CM diagnosis codes, ICD-9-CM volume three procedures codes, HCPCS including CPT and CD-4 procedure codes should be adopted as a standard to be implemented in February 2000.
In addition, we recommend that the industry be advised to build and modify their systems to accommodate changes to ICD-10-CM diagnostic coding in the year 2001 and to a single system for procedures yet to be defined by the year 2002 and 2003. We will be conducting hearings in August on security standards and so we will have standards to recommend at this time.
In some of our discussions which will need to be refined in relationship to the adoption of the single procedure coding, we would certainly want to spend some time in the near future putting together a recommendation that would include a procedure for HHS accepting proposals from standards-setting organizations to develop a process for moving to a single procedure code. And that we thought that that ought to be a two-stage process.
First would be accepting proposals for a process to get to a single procedure code and a mechanism to maintain that and the second would be the adoption of that code. We think that can be done by the year 2002 or 2003.
Those would be the recommendations. We have a draft letter that would communicate those but we wanted to put those before the committee.
DR. DETMER: Okay, why don't we first have a little discussion about the information on this letter and then we will come back to the unique provider identifier as the next item. Let's open this for discussion.
DR. IEZZONI: I am still a little bit confused about how we deal with the fact that especially for some types of patients and settings of care, ICD-9-CM and procedures classification systems that are described do not really reflect what happened to the patients. I am thinking specifically of nursing homes, long term care types of facilities. Are we going to have any language in this that, in this letter that suggests that we will be looking at some issues having to do with nursing classification systems, handicapped and disability and functional status classification systems and that we will be coming up with some recommendations about those in the future?
DR. STARFIELD: Can I just amplify that? I think that is part of a broader issue of the coordinated set and what we do about that but I gather that that is not responsive specifically to legislation so this is something that we can't recommend on that but maybe we could have some legislation about moving forward.
DR. IEZZONI: I acknowledge that we can't make a statement about it right now but I think we need to have at least a sentence in here that recognizes that the ICD-9-CM and the new procedure classifications may not be appropriate for some settings of care or most maximally useful in terms of communicating what is happening to patients.
DR. DETMER: Okay, you want to respond to that?
DR. LUMPKIN: Yes, I think perhaps we can add some language to the letter where we talk about moving to a single coding system and perhaps add something there that that coding system would have to be inclusive of all the settings and procedures that are currently being done that may not be included in current coding systems.
DR. COHN: I was just going to agree with Lisa that what is included, I guess in my own view, I had seen it as an issue more for the next stage having to do with electronic medical records since that is something that really is meant to span all aspects of care but I think as long as we come up with some words that allow it to be handled at some point in our deliberations, I have no objection to that.
I did have one question though, if I could change the subject slightly. I was actually going to turn my computer on and reference the language of subtitle B of the Kassenbaum-Kennedy bill but since it makes a lot of beeping noises, I thought it was not helpful to the committee. I needed somebody to refresh me regarding the claims attachment piece. My memory had been that there was a, specifically regarding the X-12 claims attachments, my memory was that we had a longer period upon which to advise the Secretary of HHS on what the standards should be as well as a longer implementation time and I found myself somewhat surprised that we seem to be moving so rapidly towards acceptance of that since I didn't, I got A was sort of the door to the electronic medical record.
I need perhaps to be corrected only because I may be off on my agreements of law. It is sitting here but I can't get to it.
MR. BRAITHWAITE: I can give you a paper copy if you like. It does give an additional year before we have to adopt standards for the attachments. The attachments are not included in the recommendations that I listed nor for I think what John read in the draft letter, because it is not one of those but perhaps the language was too inclusive and we ought to make sure that a statement is put in there that says that the attachment standard will follow in 12 months or something.
DR. COHN: I would like a point of clarification, I don't know if there is anything else.
DR. DETMER: Perhaps to be unambiguous, we should attach to the letter a listing of those transactions and the standard listing which would be an abbreviated list off of that attachment.
DR. COHN: I guess once again a clarification because I am actually happy to hear that. But I looked through the backup documentation, I saw a list of 10 which included that as the last ne and that was 10 so that was really why I was --
MR. BRAITHWAITE: You are right, Simon. We will clarify that.
DR. MORSE: I would like to actually go back to Lisa's first suggestion before we actually begin this discussion and the question that she addressed. Instituting and specifically recommending a process on which, I think there needs to be some specific language in this letter suggesting a process by which these code sets or standards are reviewed periodically in the, there is a precedent for this, the Health Care Financing Administration has a process for reviewing and updating the code sets and structure of the minimum data set for the long term care facilities and it seems to me that a similar kind of language could be brought into this and I believe would actually deal with, one could encompass into that language or recommendation of a process the notion that there are certain areas of electronic commerce in health interactions that are not currently covered in any way, shape or form in a manner that is adequate under the existing ICD- or the CPT code standards and that will provide a dynamic for that to be occurring, not just saying that we should maybe consider whether this existing code sets should be amplified to include new things but rather a more potential thorough review of the adequacy of the code sets and even the attachments and the applicability of those attachments. This is independent of the issue of the electronic medical record.
DR. DETMER: John, Do you want to comment at this point at this point or do you want to talk about that at your subcommittee group?
DR. LUMPKIN: I think I might want to spend some time in subcommittee trying to tease that out.
DR. IEZZONI: Can I just say that Vince and I are both on a separate subcommittee so we won't be there to make our points.
DR. DETMER: Maybe you can share Vince with their group or something if needed or, I think another question this raises is whether, in a way you are raising a fairly generic issue. It is not just specific to this and I think the question at least that it raised in my mind is whether indeed it would need necessarily to be an intrinsic part of this or whether we should have an additional set of sort of recommendations and principles that would relate to most of what we are doing. I mean, that is the kind of thing I think your subcommittee could talk about and if there is some way that you can, one of you can join a piece of that, I think it would be useful.
DR. MORSE: I personally would feel most comfortable if there were at least some sentence or language in this letter so that it would not appear that this committee is merely saying you know, we accept this hook, line and sinker and all of these little specifics and that is all there is, that is all she wrote.
DR. LUMPKIN: I think that I suspect we are all comfortable with that and maybe if you could work on a couple of sentences and then we could bring that into the subcommittee meeting to figure out how to make it work and refine it.
MR. MAYES: I am Bob Mayes with the cross-cutting infrastructure team. We would actually appreciate very much, I think, Don, the suggestion you made would be a document incorporating a lot of these recommendations for what we are sort of calling implementation issues because there is a whole variety of these general issues like the process and some of the other things that have come up that we are trying to incorporate in a more generic, general sense, throughout the language of all the regulations so if there are these, we would really appreciate, we don't mind you putting them in this letter but we would like a more amplified document.
DR. DETMER: I am hearing you say let's have both.
MR. MAYES: Exactly. Because that way we can incorporate the language in sort of the boilerplate that we are trying to develop for all the regulations that will go forward versus just trying to deal with one specific issue. We want to make sure they are consistent in terms of process so I appreciate that.
DR. DETMER: Kathleen, did you have your hand up? Okay. Other comments on this? We have a little bit of time. We are going to move on and probably take one comment.
PARTICIPANT: I was wondering, --
DR. DETMER: Could you introduce yourself please?
MR. BORGER: My name is Robert Borger, I am with the National Wholesale Druggists Association and I was wondering why you had selected version 3070 of the X-12 standards when a real recent event in X-12 was the approval of a change to the standard in the more current version which will be published this December, version 4010 which will make the X-12 standard in the year 2000 ready. And I was wondering why you had selected 3070 as the version of X-12 to implement when the succeeding version is the year 2000 ready version of X-12.
DR. DETMER: John, do you want to respond or do you want to talk about that at the subcommittee?
DR. LUMPKIN: I think we will, I am not ready to respond so I guess we will talk about it at the subcommittee.
DR. DETMER: All right. Other comments on that one? Okay, I think at least what we will do is continue then to work in the subcommittee group, wordsmith this somewhat and then come back for action tomorrow on that one. So let's move, if we could, then, to the second one which is that unique provider identifier one that I mentioned earlier and it is also a letter that you have got that has been passed around and essentially what this letter does is advocate that we would recommend or do you want to do that, John? Do you have a copy of it?
DR. LUMPKIN: I do now.
DR. DETMER: Essentially the third paragraph was where I was going. Essentially just summarize it. It is the thing that we passed around by e-mail and letter to you, the proposal would recommend an eight-digit alpha-numeric identifier be assigned to all providers along with essential identifying information. That identifying includes check digit, contains no embedded intelligence and we recommend that HHS proceed to publish the proposal for public comment without delay.
The question and controversy came up, one question at least, not controversy, had to do with the discussion that the department also evaluate a slightly longer 10-digit numeric identifier. We clearly, the recommendation clearly is advocating the eight digit alpha-numeric and urges the Secretary to proceed with that. The question I think does evenness with talking about evaluating the 10-digit numeric identifier money recommendation or not was one question.
The other point I think in the letter that is pretty key is that we also don't want these identifiers to have anything else hung on them, either by government or industry and have them literally stand by themselves as a standard and there is some language that essentially reflects that and we didn't want any requirements specific to individual programs to go with the identifier.
So that is essentially it unless you want to add to that before we open that for discussion. Okay, let's open this one also for discussion. I think, Simon, you had some conversation with Clem.
DR. COHN: Actually, I hadn't had a conversation with Clem. I had a conversation with my own technical support staff in my organization, one of whom who had actually led the WEDI activity reviewing the national provider identifier and provided input to me on this.
His comments were specifically that on the basis of hearings that they had held that apparently, now, getting back to the paper world of UB-92, apparently there is adequate space for eight, maybe nine, characters in that field to allow for optical scanning which is something that once again I don't consider myself to have great expertise
about, the optical scanning of this particular field, that he had apparently informed me that that was reason, apparently, the WEDI group had recommended eight characters.
DR. DETMER: That is a recommendation. I think the question is do you want to drop this other evaluation or not? George?
MR. VAN AMBURG: Well, I am the person who I think brought that to Joe's attention. I see no reason for advocating or putting that in the letter if we don't have a real strong rationale and basis for suggesting that we evaluate it. I don't see that in here.
DR. DETMER: Okay, that is useful.
MR. VAN AMBURG: Having listened to that, and the main reason why we considered that is because we have heard that there are a number of entities that have difficulty with an alpha numeric number as opposed to just a numeric number and perhaps what we need to look at is whether or not there is enough room in an eight digit numeric number to get us out five or ten years. If we get out five or ten years, I think that would be adequate warning to the industry to begin to convert as they do their conversions or upkeep or maintenance into an alphanumeric field. And then at that point, so essentially we would only assign out numeric numbers in the beginning and then as we find the needs, that would give adequate lead time for the industry to convert it to an alphanumeric coding system.
MR. BRAITHWAITE: Mary Emerson is here from HCFA who is the co-chair of that committee. I hope she can fill us in on the details.
MS. EMERSON: I just have one comment about the idea of assigning only numeric identifiers at the beginning, and that was our plan right from the start, to assign only numeric identifiers until those were all used up and then we then could begin introducing alphas into the identifier and the reason was so that systems that are not able to use an alpha identifier right now could make those conversions just as you said.
MR. SCANLON: Clem is not here yet but Clem was the mentor who indicated he would prefer not to include a reference to the 10-digit alternative because he thought it would confuse what we were, they were actually endorsing or proposing.
DR. DETMER: Okay, so maybe your committee could wordsmith that as well. It does look like at least or minutes clearly will reflect this kind of discussion and I think if we do take it out at least it is still a piece of our record that I think is available so any other comment on that?
Okay, the third one, as I said, I will call on George Van Amburg. This came up yesterday at Dr. Iezonni's group's discussion and it is the piece that said draft recommendations National Subcommittee on State and Community Health Statistics. George?
MR. VAN AMBURG: Thank you. The Subcommittee on State and Community Health Statistics, I should say the former subcommittee, it no longer exists, had held a number of hearings over a several year period on the community assessment process which was of major interest to state and community health agencies and we have summarized the results of those hearings into a set of recommendations that we would like to get distributed to the secretary, to state health agencies, to NAACHO and other groups involved in the community assessment process.
The recommendations are really split into three pieces. One is some recommendations n the community assessment process as a whole. We found there was great variation among the groups and agencies doing community assessment about how this was being undertaken. We thought perhaps a basic set of principles would be a good thing to have and a set of recommendations.
There is a set of recommendations all related to state health agencies. These are primarily related to two ares, one is to improve the availability of data to the communities providing better access, electronic access. And the second, to provide better geographic detail on the data sets that they collect. So that the data can be used more effectively in the local communities.
The third set of recommendations is for the Federal Government, these are primarily related to technical support and some relationship to improving the availability of state and community data from some of the national data sets and Jim talked a little bit about that this morning as well. So that kind of dovetails with some of those efforts.
Those are the three areas and I guess I would be glad to answer any questions.
DR. STARFIELD: Just a quick question. What is the data on these, George? It doesn't have a data on it. Is it today's date or yesterday's.
MR. VAN AMBURG: This was done last June.
DR. STARFIELD: I just want to know, we have looked at parts of this before, right?
MR. VAN AMBURG: Yes. This is the one I think some of you looked at some time ago.
DR. IEZZONI: We looked at this in November I think.
DR. GREENBERG: It was before the Subcommittee on Health Data Needs Standards and Security.
DR. DETMER: Okay, this is open for discussion.
DR. IEZZONI: We are talking down here, why don't we take our break now and let people read?
DR. DETMER: We are letting them read now. We will take our break after.
DR. IEZZONI: I was going to suggest is while people are reading it, there is a lot of quiet and people could come back right after a break that we could take early and then we could discuss it.
DR. DETMER: I would just as soon have you read it right now if you don't mind because I think after the break we would go right to our panel and then you will break out and need to respond so just go ahead and take a look at it. I think it is fairly straightforward.
DR. MOR: George, there is, I know this was done last summer, last year, but really last, a couple of weeks ago when we were out in San Francisco we heard a lot about state data and we heard a lot about issues about privacy and linkage and record linkage issues. I don't see anything in here about that issue. I went through it relatively quickly. Were there just no recommendations that you all had with regard to record linkage within state data systems?
MR. VAN AMBURG: Yes, it is in here but it is a bit subtle. It is under explorer access to private sector data and integrate the data with some of the state data. There was earlier discussion of linkage and in getting other data sources for the community assessment process.
DR. MOR: And that is why there is the recommendation for the Federal Government to promote, provide leadership in that issue. I like that recommendation. The question is whether there should be something more explicit. I guess the whole issue of privacy is going to be dealt with separately.
MR. VAN AMBURG: Right. This effort was really to promote the use of data.
DR. LUMPKIN: I basically like the document. I think that the time line between the completion has left it a little bit weak, particularly in describing the process. There is an Institute of Medicine report that was released in I think in January of February of this year of using performance monitoring to improve community health and it strengthens really the issue of the ongoing, the last item on page two, the ongoing effort with feedback and really talks about using more performance monitoring techniques to do the feedback loop and I think that would strengthen the document if that one paragraph could be tightened up a little bit.
MS. WARD: I would just comment, being a state Department of Health representative, I don't think this will provide any problem to most states. It is an issue that has been under discussion at those kinds of levels and to have this kind of thing come out in support would lead support to those efforts that are already underway and should not hinder what state and local health departments are doing.
MS. FRAWLEY: I think it is a very good document. It is the first time I have actually seen it. I think it is a good document. I certainly think the committee should adopt it.
DR. GELLMAN: I don't have any objections to the substance of the document but I do think there should be something in here that may give some recognition to the privacy issue. I mean, I am not expecting any resolution. The document says data, data, data all over it, something should be said in the bounds of this document.
MR. VAN AMBURG: What does the committee feel about that? Some statements could be integrated about the appropriate linkage and use of data adhering to privacy and confidentiality restrictions of the data. There could be a statement in there like that. What are you thinking about?
MS. FRAWLEY: Just to respond to Bob's point, the problem that we have got is that states have taken different approaches with their state databases. We have got some states that have very strict statutes protecting that information. Then we have other states where there are different issues so I don't know that this report can necessarily address the 50 rules of the road as far as state data bases. I mean, I think Bob's point is important that we always have to be mindful of privacy considerations but again we are back to there are so many different rules of the road.
DR. LUMPKIN: I would almost see something like that perhaps being put into the introduction. I think that the difficulty is this document is not being presented de novo. It is part of the entire work of the committee and so all the other things we are doing fit in there and I think we just need to allude to our privacy documentation as being a good background to understand how this issue impacts the recommendations.
DR. MOR: The other strategy is just to ask the Secretary to do what is already being done which is sort of national review of privacy and data nationally and just leave it at that as a recommendation for federal leadership. That way we sort of sidestep the issue of what a recommended state structure for handling this issue is.
DR. HARDING: George, the issue of state health agencies exploring, accessing private sector data, does that apply the other way around to that the private sector would have access to link data with privacy complications of that being considered?
MR. VAN AMBURG: The private sector having access to the data in the state agencies and the local agencies allows some problem in the reverse. They usually can get access to most of the data. But for the states to get data held by private corporations is a different ballgame.
MS. FRAWLEY: Just an informational comment. There is an issue, this week's issue of Modern Health Care has a very good piece about state health agencies and the data and it talks a little bit about that issue and references the cornerstone project in Illinois. I mean, I kind of sped read it at 11:00 last night but it was just in yesterday's issue so people that are interested might want to get their hands on that article. It really lays out some of the issues quite well.
MS. WARD: I was just going to say to Dr. Harding that for most state agencies, because this is population based analysis, almost all of these data bases have a public file that has had all the identifiers removed and that is why if it has identifiers then you move over into a human subjects review process so that is why we are trying to keep these two separate in these discussions.
DR. DETMER: It sounds like we need some wordsmithing just to relate to this but I think that is easily, I am hearing general support for this but some work on that perhaps in your group could maybe work on that and come back tomorrow with that.
DR. GELLMAN: I don't have anything in mind more than a sentence or two, just a recognition of the issue, that is all.
MR. VAN AMBURG: I think John's point about putting it in the introduction and the funding is a good place to put that and we will work on some language.
DR. DETMER: Any other points?
MS. COLTIN: I noticed in connection with what Jim was saying earlier with regard to allowing states to buy into increaSing sample sizes for some of the national surveys that you have that identified under the recommendations for the role of the Federal Government, that they make that opportunity available. I didn't see anything under the recommendations for the state health agencies that they in fact be encouraged to utilize that approach where it would meet their needs as opposed to proliferating all kinds of other surveys and I wondered if you had discussed that issue.
MR. VAN AMBURG: Not in that context. I think the issue that the committee discussed and I am going back a couple years now to some of these hearings was the fact that those options really were not available to the states and we really wanted to make that available. It sounds like there has been a lot more progress and maybe we could put a sentence in that would encourage the states to take advantage of these opportunities. I think it would be a good suggestion.
MS. COLTIN: That is a way to promote standardization.
DR. MOR: That is an excellent idea because right now there are many states that have their own health surveys on alternate time schedules with alternate foci and so on. Different questions, et cetera, that might encourage some additional focused standardization of those.
DR. LUMPKIN: I think tied into that, two things. The first is that we may want to suggest that this whole issue be examined because one of the things we do in Illinois is there is a behavioral risk factor survey which is done by states and we have opted to do that on a county by county basis over five years so we will cover every county over five years. So if we are really talking about community based assessment, we need to evaluate the fact that there may be ways for communities to buy in additionally so they can get data that is meaningful to them.
And the second lesson I learned today from the earlier presentation, if our state were to have passed a law allowing medical use of marijuana, we might have state level data on substance abuse, too. So we will have to consider that.
DR. STARFIELD: I think one of the reasons we are having a little trouble with this privacy issue is because it is not really clear what we mean by community health statistics. I mean, nowhere on here does it talk about individual data like Medicaid data and I am not really sure whether you are even thinking about it. And if I am not talking about individual data, then we don't have the issue about privacy.
MR. VAN AMBURG: But you do have the issue I am trying to see when you get to small geographic level of detail. And that is an issue within state health agencies and communities.
DR. STARFIELD: What are you talking about when you talk about, I mean, somewhere you have to sort of define what you mean by community health data. If it includes survey data, that is different. If it includes Medicaid data, that is a little different too.
MR. VAN AMBURG: I think where the privacy issue comes in, it comes in a number of different ways. One is how the data is presented, whether or not it is presented at record level, that is an issue. I think the privacy issue comes in a number of ways. One is if record level data is used, then it certainly becomes an issue but the second is that you can't summarize data if you don't have access to it and so having access to the original record level data in order to summarize it and then make it unidentifiable and aggregate it is one of the main issues. Obviously we speak to how that can happen but I think that is one of the important contributions of our privacy document. It talks about how this data can be used for public health purposes and planning purposes in an aggregated fashion.
DR. STARFIELD: I understand that but you know, the traditional use of community health data is like birth rates, low birth weight rates and that kind of thing and it needs, what I am saying is the document has to be clear about what it is we are talking about and I realize that. The second page does mention some kinds of data but it doesn't mention other kinds of data so I don't really know what is covered in this document. That is my only --
MR. VAN AMBURG: Well, people have been doing community health assessment and drawing data from a variety of sources, from state health agencies, from several surveys, from local agencies and integrating that but the issue on privacy, even on an unidentifiable data, when you start using JAS systems and getting the small geographic levels of detail in neighborhood type analysis, which a lot of communities want to do, then you do have a privacy and confidentiality issue.
DR. STARFIELD: I am not arguing you don't have a privacy and confidentiality issue. I am just saying that this doesn't read as though you do, and when you discuss the kinds of data you use, I think that is where you have to put it down on the second page.
DR. DETMER: Any other comments? I think this has been a good discussion and we will revisit this tomorrow for action. It sounds like we will be prepared to do that. Why don't we break until, I have 10:07 or 10:10. Let's break until 10:25.
(Brief recess.)
DR. DETMER: I think we will get started. We have, one of the things we learned out in California was a great surprise to us. Some of the states didn't know what we were up to and we were astonished by that. But mostly we were concerned by it because, in fact, there is so much wisdom and good will and energy out there we need to know so that we are in a constructive dialogue with one another on these issues.
So in light of that we put together a panel on state-based standards and privacy initiatives and we are delighted to have Walter Suarez, Rick Rubin and Elliot Stone here. They are going to not speak in the order I just listed them in the agenda. I do want to thank, before I call on Elliot, I want to thank Gail Jones and Judy Ball for the efforts the put in to putting this together. Thank you.
So I think you wanted to be the first of the three, Elliot?
MR. STONE: Thank you, Mr. Chairman. Good morning. With a slight turn of the phrase that you are probably used to here in Washington, we are from the states and we are here to help.
I am Elliot Stone. I am the executive director and CEO of the Massachusetts Health Data Consortium. We are a nonprofit, private, public partnership created by our states' leading health care organizations 20 years ago as a nonpartisan site for data collection and dissemination.
Dr. Paul Denson of the Harvard University Center for Community Health and Medical Care was our first chairman of the board back in 1978 and at that time he was also actively advising and serving on this national committee.
I would like to use most of my time today to discuss the implementation issues that are associated with the standards to be recommended by the national committee. Just as the national committee has established relationships with ANSI and WEDI and the various standards development organizations, I would like to propose that the National Committee on Vital and Health Statistics recommend that the Secretary of the Department of Health and Human Services establish and designate regional technical assistance centers to implement the standards in public law 104-91.
Let me explain the current standards related activities that the Health Data Consortium has put in place in Massachusetts in anticipation of the National Committee's recommendations and your timetable.
Eighteen months prior to the signing of the Health Information Portability and Accountability Act the Health Data Consortium convened the first statewide meeting of the chief information officers of the largest health plans and the largest hospital systems. These CIOs have met monthly since then and now oversee a project known as the affiliated health information networks of New England.
The membership now includes 24 health care organizations participating in the affiliated networks, 12 health plans, 8 hospital systems, a pharmacy chain, the largest home health system and the statewide medical society network. In your packet I have attached the vision statement of that affiliated network project, the major goals of that affiliated network project which include the design of an interoperable network providing access to an interconnected infrastructure, a third goal to protect and secure the network and a fourth goal to promote and sustain the network and to sustain collaboration among all the stakeholders.
I have also provided you with a membership list and a roster of all of the organizations participating in Massachusetts in that affiliated health information networks of New England project. Together these health plans that are working with us, the 12 health plans working with us represent over 3.5 million covered lives of our state's six million population. The chief information officers of these organizations created two content work groups, clinical EDI work group, a business EDI work group and they created two cross-cutting work groups -- confidentiality and privacy and health care identifiers.
An additional cross-cutting work group on network infrastructure standards was created this month and in your materials there is an organizational chart showing how the health data consortium is structured and these five work groups are established.
Each of the five work groups is staffed by the health data consortium but directed by senior managers appointed by the chief information officers. Seven information technology partners are also assisting this project and we have listed them here. They include computer sciences corporation, EDS, Hewlett Packard, HPR, IBM, IDX and Red Brick Systems.
Each of these regional work groups has developed a partnership with a national organization. The clinical EDI work group with the CDC for their emergency department data set, the business EDI work group or the NCX-12-N subcommittee for their 270, 271 eligibility standard and the confidentiality work group with the National Research Council, the consortium as you may know was a co-sponsor and provided funding along with the National Library of Medicine of the recently published National Research Council study on the security of electronic health records.
Our health care identifiers work group as partnered with HCFA in support their national provider identifier. These work groups have presented their recommendations on standards and implementation issues at major public forums. In March 1996, prior to President Clinton signing the Health Information Portability Act and then again in March 1997. And in your packet I have given you the program for those public meetings and an order form for those public meetings. We also have this public document. It was given to every attendee at the public meeting which talks about the standards that our work groups recommend and this public document is down-loadable from our web site at no charge from the web site.
Each of these public forums has been very well attended, over 400 people and the findings were distributed in this hard copy report and our website is www.mahealthdata.org.
Our regional project is overseen both by the health data consortium's community-wide board of directors and by a steering committee which includes a health plan CEO and purchasers from the largest employers in the state. One of those purchasers also sits on the board of directors of NCQA.
The commissioner of our state's Medicaid program has also recently agreed to sign a memorandum of understanding with the health data consortium in order to expedite the use of national standards on Medicaid's agents and to advise Medicaid if any of its local procedures constitute barriers to the implementation of standards across the region's health plans and providers. As an aside, he also mentioned at the same time, while he was very interested in helping us with this project, he does firmly believe that the HIPAA is an unfunded federal mandate.
These relationships with purchasers, with health plans, with providers and consumer advocates, have been crafted by a regional organization, the Massachusetts Health Data Consortium. We have a vested interest in seeing that your national standards are implemented expeditiously. The past 20 years the Health Data Consortium has been a data source for health services researchers, for policy makers and for strategic planners. The chairman of the consortium board is Dr. Alvin Tolov, executive director of the Health Institute at New England Medical Center. Dr. Tolov lead the consortium's board in crafting a missions statement which is to lead the development of a comprehensive health data system, to address the health information needs of the Commonwealth of Massachusetts, for the purpose of improving health care and health in case you are confused, that that is the Commonwealth of Massachusetts, not the Commonwealth of Virginia.
Our only success story toward that comprehensive health data system has been a statewide inpatient data base, an ambulatory surgery data base and a statewide physician supply data base. Before the affiliated networks project, every time we tried to encourage other providers or health plans to voluntarily pool and centralize their data, there was reluctance and suspicion.
Our new affiliated network strategy, devised by the 24 CIOs, is a win-win for everyone. We no longer advocate building centralized regional data repositories. Instead, our project's leaders advocate accelerating the use of the national standards recommended by the Secretary of the Department of Health and Human Services in order to standardize components of all of the private data bases held by the thousands of providers in our state. In essence, our logo looks pretty much like the picture in your packet and is related to the subcommittee report just presented to the committee. That is, how do we get access to these private data bases and one of the solutions is that we ask the private data bases to hold a segment, a component of their data bases in standardized formats and that we work out authorized releases to those standardized components of their data sets.
We will then be closer to a comprehensive health data system once the standards are recommended by the Secretary, and we will be more likely to facilitate authorized release of these standardized data sets for current projects such as our own New England HEDIS Coalition which has already released three annual health plan report cards and we will use the comprehensive health data system for future quality monitoring. With regard to confidentiality and privacy issues, the consortium staff and our affiliated networks work group on confidentiality are also meeting with local advocacy groups and the leadership of our state legislatures health care committee. As some of you know, some of the national groups, the National Coalition of Patient Rights are actually based in Boston and so we have an opportunity to meet with them first hand.
Several bills on consent are pending in the state legislature. While most of our state legislators would welcome preemptive federal legislation on the confidentiality of medical records, we do have a strong fair information practices act in Massachusetts and laws that also currently allow patients to have access to their medical records.
And so we do not want to see our strong state laws weakened by federal preemptive legislation, and this is something I know that your committees are going to have to take on.
In summary our suggestion for a regional technical assistance centers is grounded on the principle that health care is delivered at the local level. You have heard it said the other way. Health care is not delivered at the national level. As a designated regional center, we would encourage those regional centers to have the same vested interest as the Department of Health and Human Services, to improve health care, and health, in its region.
A designated technical assistance center would build local awareness of the standards and the implementation timetable. These centers would facilitate regional educational forums so that national standards are not implemented differently by each provider or each health plan.
They would identify test sites and they would provide feedback to the department on barriers to local implementation. Experts in the diffusion of innovation have counselled us that we much seek early adopters for our new technologies and identify the opinion leaders who will help us reach 100 percent of the providers and 100 percent of the health plans will benefit from implementing the standards in the HIPAA.
Professor Michael DeTussos(?) of MIT's lab for computer science recently described in his book what will be, he described the process of forming virtual alliances in the information marketplace of the future. And he said, "Instant organizations of people who have never met their peers, let alone built some mutual trust won't work." What we have set up in our area is that mutual trust among the hospitals and the health plans and we have based those collegial efforts and those collegial relationships among the CIOs, the chief information officers, of these competing health plans and providers in Massachusetts.
Several of those CIOs have become early adopters and have already agreed to implement the standards ahead of the federal timetable. The chief information officers in our affiliated network project look forward to working with the national committee and the Department of Health and Human Services in a partnership to develop a truly comprehensive health data system in our region.
This is a very exciting time for those of us for a long time who have been advocating standards, look forward to helping the national committee on any of your implementation issues and I thank you for the opportunity to give this testimony.
DR. DETMER: Thank you and congratulations on the work that you have been accomplishing. I think what we will do is just go on through the three presentations and then just be able to open this up to the whole group so I think Walter, you are next, Dr. Suarez.
DR. SUAREZ: I will be moving overheads. Can everybody hear me in the back? My name is Walter Suarez. I am the executive director of the Minnesota Health Data Institute and just like Elliot, I want to thank you for inviting me to talk about some of the things that Minnesota is doing with respect to standardization, in particular administrative simplification efforts and some of the issues related to the implementation timelines.
I want to outline some of the things I want to cover, first of all, talk a little bit about the institute, explain who we are, then talk about a legislative initiative that was passed in Minnesota about three years ago now, specifically addressing administration issues. Some of the laws we see states can play in implementing the new federal administration legislation conclude with some of our own findings on the importance of education and technical assistance efforts.
I have put together a packet of materials that hopefully you will have that includes basically documents describing both the activities of the institute as well as some of the efforts going on in the state and emphasizing the role of education and technical assistance throughout.
Let me tell you a little bit about what the institute is. The word public-private partnership has been used several times now and we are indeed a nonprofit public-private partnership. Its origins were in the private sector back in 1992 through general support from the John A. Hartford Foundation from New York, basically supporting private sector activities related to the ability of purchasers and consumers to obtain information more efficiently about the health care system they were purchasing and they were accessing.
Through efforts and through the evolution of our health care reform activities in Minnesota, the private and the public sector joined and created through legislation in 1993 this new concept of a public-private partnership that blends both the government with the private sector focusing on the issues related to data and standardization.
Just like our whole structure, our funding and governance is a blend of both public and private sector. We received funding form the state as a means of grants. We also seek private and other foundation grants and we also receive funding from the private sector participants in the organization.
Our mission is to support the information needs of consumers and purchasers in providers, health plans and policy makers. All the stakeholders that participate in the health care industry in measuring and improving the quality and cost effectiveness of health care in Minnesota. We accomplish this mission by implementing basically three programs. We work on standardization, on performance measurement information measuring health plans and providers and providing that information to the purchasers.
We work on standardization of health care electronic commerce to make the activities around the administration of health care more efficiently in the state and we work on adopting and implementing data standards for release and protection of data at the state level.
So throughout you see that standardization is at the heart of our activities and our mission. As part of this process, back in 1992, the Institute and basically partnership with the Department of Health, the state agency dealing with public health in the state, worked on a language to move forward some initiatives to support the implementation of standardization in the health care industry.
We were certainly looking very closely at what the national activities were back in 1993 and 1994 but we came to realize that we needed to work at the state level to promote and to facilitate implementation of standardization across the state, and we came out with a health draft and supported the passage of a Health Care Administrative Simplification Act back in 1994 that basically laid out a very progressive plan to implement standardization across the health care system.
It included five primary topics or areas --- standardization of billing forms. Oddly enough, the state didn't have any standard form even though everybody was using the de factor standard. We didn't have any stated standard billing form for the different transactions in terms of the paper base.
But we moved beyond that and also looked at standardization of the differing components of the health care industry, particularly standardization of unique identifiers. The standardization of electronic data transactions related to administrative health care and the standardization of the health care ID card issued by insurers in the state.
And finally, the legislature, recognizing the importance of education and technical support, also established and created the Minnesota Center for Health Care, EDI, in the state, particularly and mainly to promote the use of these standards and to facilitate a transition to the use of these types of standards.
I will talk a little bit about each of these. I will not talk about forms because I think we are hopefully beyond that at this point. But I will start with the unique identifiers and back then in 1992, we were looking at what kind of things were needed and we identified the four core unique identifiers that are now also part of the federal legislation. We looked at the individual patient identifier, the employer or what we call purchaser, group purchaser identifiers. The help line identifier and the health care provider identifier.
The status and basically what is the current level of implementation is here. At the beginning we looked at the unique provider ID number which was given by HCFA back in the early 1990s and earlier before. We also looked at institutional provider ID using the federal tax ID number but based on the implementation of all these standards were pushed into the 1998 time frame, somewhat hoping that there would be some federal framework to work with and that is what we really are very excited about this federal legislation so now the current status of these provider IDs is in our statutes in Minnesota is that they are tied to the HCFA legislation and they are basically looking at using the NPI as the provider identifier.
In terms of the plans, we initially looked at the NAIC, company code for the health plans but now we have moved beyond that and are listing the payer ID as the unique ID for health plans and it is again tied to the HCFA legislation.
In terms of the purchaser ID or the employer, initially the legislation called for studying the need, evaluating the need to identify employers for purposes of health care data and administrative transactions. But now the current legislation calls for the requirement of using these which is tied to the HIPAA legislation and the patient ID was the most difficult and certainly the most controversial. We initially actually stated in the legislation that we were going to use the Social Security number as the unique identifier and that those patients that would elect not to allow the Social Security number to be used will be ineligible or will be able to enroll an alternative numbering system which must be developed by the state.
All of this was very, very complicated and very difficult to really implement and again we were hoping to try to see something coming out at the federal level but based on the federal legislation, the Public Law 104, this year the legislation at the state level has basically been modified to tie the patient ID to what the health care, the HIPAA legislation calls for.
So we have been able to somewhat get off the hook on this one and pass it to the next level.
The second aspect of the administration, the education legislation in the state was the implementation of core EDI transactions and this is where the initial priorities which are in law today in Minnesota, the claims submission using the ANSI A-37, the claims payment using the ANSI A-35. We added the claims status request and notification using the ANSI 276-277, enrollment using the ANSI A-34 ineligibility response using the ANSI 270 and 271. We also recognized the importance of continuing supporting the use of pharmacy claims via the NCPDP standard and the timetable for these initially was to be set 1-1-97 which was pushed to 7-1-97 and now it has been tied basically to the implementation schedule of the HIPAA legislation.
The way this works in the state, the way the language reads basically is that six months after the Commissioner of Health in Minnesota approves an implementation guide which is the instrument used to implement these standards, organizations in the state that are doing some kind of EDI must comply with the standards and use the ANSI standards and the corresponding implementational guide.
So the legislation was not really forcing from one day to the next to move everybody from paper to the standard but actually allow those that are using paper to at lest continue using it and through other means try to promote the transition to the standard but allow those that were using already some kind of EDI to begin moving towards implementing the EDI standard that was approved.
Important in this process was the agreement on these things called implementation guides. Back in 1995, before the ANSI group decided to really work on implementation guides, Minnesota decided to create its own group to try to agree on which implementation guide in Minnesota it was going to be using to basically implement these standards. The group began basically looking at the two initial core transactions that claimed submission and remittance and in May of 1996 and September of 1996, the implementation guide group recommended to the Commissioner and the Commissioner approved the use of the implementation guides which in this case were the ones that later were the basis for the implementation guides that are being developed now by ANSI.
In the A-34 and beyond, that is when ANSI decided to really get into the development of these national standards and this implementation guide group shifted its focus from really reviewing and endorsing and having the commissioner improve a guide to playing a very proactive role in the ANSI groups and bringing all the Minnesota interests to the ANSI committee and all the Minnesota reviews and comments to the ANSI committee related to these guides and that is the process we are going through right now.
The last component is the ID card, and under state HMO regulations, all health plans are required to provide an ID card to its members but beginning with 1-1-98, health plans are now required to use the standards for these uniform ID cards. The standards are basically in two areas -- the type of information that is needed to be provided in the card as well as the physical characteristic standards. We are using ANSI-ISO standards for these types of characteristics. These were the same standards recommended by the WEDI group back in 1993.
Let me focus on the last component which we believe is one of the most critical components of our own health care administration education legislation which was education and technical assistance. The legislation emphasized the importance of this component as a way of really moving forward with this plan of implementing EDI standards and in light of this, the legislature decided to establish this group, this entity called the Minnesota Center for Health Care EDI and provide an initial funding for it.
The Center for Health Care EDI truly is the first health care EDI education and training center in the nation. It was created, again, as part of this legislation and it is a division of the Minnesota Health Data Institute. Its mission is to advance the use of health care EDI in the state through education and training, through promotion and through technical assistance and through also being very actively involved in national standards setting organizations. All the staff of the Center for Health Care EDI belongs to ANSI, participates very actively in the committee, in the ANSI group discussions at different community levels and basically plays a very critical role in bringing the state issues to the ANSI national committee.
The curriculum developed by the center which has been tested and has been provided is endorsed by WEDI and by others around the country and we have already, since its inception and establishment back in 1996, the center has provided, actually back in 1995, provided many, many hours of training and education both at the state level as well as nationally.
All the groups involving standard efforts in Minnesota include the Administrative Information Committee which focuses on data definitions and some of the issues related to coding and the Minnesota EDI health care users group. This is a users group that facilitates the networking among the different group participants in the state in implementing EDI. This is directly being supported by the Center for Health Care EDI as well.
In terms of coding and classification standards, we believe there should be a standard coding system adopted. We in Minnesota currently identify the same coding systems that have been mentioned before, the ICD-9, CPT, HCPCs, the UPN and the STC for bar coding standards. We believe there is a need for some other coding systems to be adopted as well including some of the things that have been mentioned before related to coding systems for other health care settings like nursing homes and home health care as well as coding systems related to clinical data, particularly data dictionaries and those kind of things.
Let me change gears a little bit here and talk about some of the things we see as state roles in implementing the federal legislation. We are very supportive of the federal legislation. We believe that it is required to set a national standard for EDI as well as to define a national data privacy and computer framework including standards for data security. We believe that federal legislation should certainly preempt any state legislation that is less stringent but we also believe that states should be able to enact some more stringent requirements when they see appropriate.
And at the state level, we believe that there are efforts that are necessary in order to fulfill the mandates that the Federal Government has now and these are the four areas that I think are the critical elements, roles for state government and for state organizations to play. First and foremost education and resource center activities. I think just like Elliot mentioned, health care is provided at the local level, we believe that implementation of EDI will happen also at the local level and we believe that this will be necessary, an education and resource center activity will be necessary in order to facilitate that happening.
Technical assistance for those organizations that don't have the ability to really understand or implement these new standards. Testing of implementation efforts, that is one of our more important roles in the state. We facilitate the testing of new standards that organizations are implementing and certainly last but not least, the evaluation and monitoring, we do in a systematic way, evaluation of all our projects and we believe that evaluating the way the implementation is happening of these standards is very critical.
And in Minnesota, administrative simplification legislation, this legislation I just talked about came out of a consensus building process and we believe that the best way to approach this is through a consensus building process that also is later incorporated into some legislative framework with emphasis on legislation and technical assistance at the local level.
Some of the issues and implications of health data standards and privacy concerns that we see, Minnesota has a very stringent data privacy legislation protecting health records yet this is different from what other states have and that is why we believe it is very important to have a national data privacy and confidentiality framework legislation upon which states can build and expand if they so desire.
We believe that implementation of these standards is and should be consistent with data privacy provisions and that things like population based registries that is a published health functions will significantly benefit from the assistance of both data privacy as well as data interchange standards.
We think that some of the state-based goals that can be reached by implementing these data standards and privacy standards include the things that the institute does throughout its programs. Quality measurement for purchasing. We believe that standardization in the data content as well as the data transfers will enhance the ability to provide quality measurement for value purchasing. This standard will also enhance the ability to monitor our progress towards reaching public health goals and additional population based efforts such as immunization registries will be also enhanced.
Let me conclude basically by showing you some of our findings of one of the things we do enhancing this or emphasizing this point on evaluation and monitoring. This is some of the summary of our preliminary findings on the 1997 Health Care Electronic Commerce Survey. All those results are going to be coming up in a more comprehensive report. I included several of the findings in the packet and I am not going to go over all of them. I just want to highlight a couple of things that I think are important.
The purpose of this certainly was to assess the overall level of implementation of health care EDI in Minnesota and to identify some of the electronic commerce education and information resource needs among the state. We mail out our own surveys to basically all the health care organizations in the state, all the hospitals, all the licensed laboratories in the state, physician clinics, nursing homes, dental clinics, basically covering all the spectrum of providers.
The surveys were reported or will be reported in five core areas, information technology and Internet, administrative EDI, clinical EDI, telemedicine and EDI education and training needs. Again, there is several slides that you have in your packet that highlight some of the key findings. I just want to highlight a couple of them.
In terms of EDI administrative transactions, some of the barriers that we identify for implementing EDI across the board were first and foremost the cost to implement, that is one critical element that organization of identified barriers but certainly some additional barriers like really the insufficient cost benefit analysis or information related to that or their lack of understanding of what is the benefit, EDI being a low priority among the organization and then also some of the complexity of issues related to EDI.
Some more barriers, the trading partner readiness, the lack of identified business need, lack of training and then lack of these standards and implementation guides. We also identify some benefits that organizations mention in the survey and up high were the improved customer service. That was an interesting finding that really through implementation of these standards, organizations identify the improved customer service as one of their benefits and you can see some of the other benefits received.
There is a lot of need of education and training and we identify basically across the board more than 4,000 individual training needs in terms of people needing to attend these training sessions that we provide.
So as I said, these findings will be more comprehensively available and we will make them available to the committee probably later this coming month.
I just wanted to conclude my remarks by highlighting a couple things. First, we are very supportive of the whole HIPAA administration classification efforts. We are very supportive of the development of a national data privacy framework. We are also very supportive of the use of ANSI standards, and I was very pleased to hear that that is one of the considerations that is going to be taken by this committee as well as the use of other national standards developed by national standards setting organizations. We are very supportive and very interested in assisting in the development of a comprehensive education and technical assistance plan to successfully implement these new mandates and last but not least, we are very supportive of some of the key identified roles that we see states have in implementing this provision.
So I will stop here and I thank you again for the opportunity.
DR. DETMER: Thank you. We will move to Mr. Rubin.
MR. RUBIN: Good morning. My name is Rick Rubin and I am the president of the Foundation for Health Care Quality based in Seattle, Washington. Mr. Chairman, members of this committee, I want to thank you for inviting me here to the other Washington as well know it on the West Coast.
I have been asked to talk with you this morning about some of the things that my organization, the foundation, is doing but I would also like to talk about some of the partnerships we are involved in within Washington State. I want to talk a little bit about some of the primarily private partnerships that have public participation and some of the public partnerships that have private participation.
I will also finish up with sharing some of the lessons we have learned as we try to implement electronic commerce in our community.
Let me start with a copy of our mission statement and I think the key words here are we are really involved in trying to share information needs. Our organization, much like Walter's and Elliot's reflect sort of a United Nations of the health care community. I like to think we sometimes work a little bit better but it is the same type of constituency, providers, purchasers, payers, consumers, state government, Federal Government, actually the local region ten director of HCFA sits on our board as does the head of the state health care authority and the Secretary of the Department of Health so again we try to make it truly a public-private partnership.
In terms of some of the specific activities that we are engaged in, we do some work both locally and nationally. Nationally we operate the quality measurement advisory service which focuses on working with groups of consumers and purchasers around the country who want to measure quality, helping them to do that a little better. CHMIS Resource Center focuses on groups like ours, Elliot's and Walter's and others who are looking to meet the networking component here. You might think of the middle box as the boxes and wires and the quality measurement advisory service as measurement and just a comment I would make, working in both these areas, it is always surprising and somewhat disappointing to me to see how rarely those two groups get together.
I think there are very significant links between our ability to do performance measurement and the progress we make on the electronic infrastructure, and I am not sure that that linkage is well appreciated.
Third, within Washington State, we work on the community health information partnership and in that we work with both the electronic commerce side of this and the performance measurement side of it but in addition we start to get more and more involved in the area of consumer affairs. I think traditionally we found that most of our discussions were held between health industry folks and technology people and measurement folks and the consumers were by and large left out of that process. I think we tried to bring them in in a manner that was inappropriate and sometimes incomprehensible to them so we tried to make more of an effort to reach out to that group.
I wish I could tell you it has been spectacularly successful but I think, like a lot of other people, we are still learning how to do that job better.
In order to understand what is going on in Washington, I wanted to share with you one slide on the environment. As most of you probably know, in 1993, Washington State had a comprehensive reform act. In 1993, we had comprehensive reform of comprehensive reform. Depending upon your political perspective, the 1993 act was either gutted or put out of its misery in 1995. What is important for this discussion is that a component of that 1993 act was a proposal for a very comprehensive information system. HSI, the Health Services Information System, it was the all-singing, all-dancing health information system mandate. It addressed both data collection, electronic commerce standards, the whole bit and it is impossible to talk about this particular subject in Washington State without relating to our experience with HSIS and it has created certain feelings about legislative mandates in this area.
On a market basis, like many other markets, there is a strong emphasis on managed care. That is clearly where things are going in Washington State. I think it is very important to note that all of the major managed care plans in our market are regional which I think says a lot about doing things on a state by state basis as opposed to a federal basis. There are certain things that need to be done on a state basis, other things that are probably going to have to be done on a larger scale.
It is interesting when you talk to our CIOs of the various health plans, they always have to be thinking regional. They have an interest in getting something done in the state but a part of their consciousness is always focused on what is going to happen regionally. Am I creating a solution that will work here in Washington but is going to cause me problems in Oregon, Montana or Alaska.
We had an extensive experience in our community with the deployment of proprietary EDI networks over the starting in about 1993 and going on until very recently. Those networks were, by and large, spectacular failures. Some of them still remain but the idea that literally a provider, in order to talk to three different carriers needs three different computers on their desk I think drove home to our community in a very pragmatic way some of the discussion about standards and, unfortunately, I think sometimes people need to go through those type of exercises before they recognize what this somewhat esoteric subject called health information standards really means.
The growing emphasis on Internet technology, I can personally not over-emphasize enough for you the importance that I feel the Internet revolution has brought to this whole field. It has accomplished, I think, a few important things. Number one, there are some real benefits, perhaps not quite as spectacular as some of the true advocates of the Internet describe, but still there have bene some real benefits.
I think almost more importantly, it has done two other things. Number one, it allows people to see real life, the benefits of using a set of standards. That always used to be a theoretical discussion but a lot of people have now been introduced to the benefit of single pane of glass.
Lastly, I think it has removed a psychological barrier that why even talk about this stuff in health care because it is probably can never solve. I think we have noticed an increasing interest in talking about standards now that the Internet technology is starting to be deployed more widely.
In Washington State, we have had a long term interest in quality measurement and informatics. A lot of the intellectual leadership has been provided by folks over at the University of Washington School of Medicine and Public Health and again this subject is not new for them. And last, everybody in Washington is unfailingly polite. We have a great tradition of collaboration partnerships. That often means that you go to a meeting and end up in the meeting not knowing what anybody really thinks. They don't tell you until afterwards that they were really unhappy with a certain idea but it has its advantage of making a very civil community and again, there is a strong tradition of working together. Public-private, public-public, private-private.
Let me share with you a few of the activities that are going on in Washington State. First, the Community Health Information Technology Alliance, CHITA, this is an activity of the Foundation for Health Care Quality. Again, this is a private activity that invites public participation.
CHITA consists of most of the major health plans in the area and many of the major provider organizations. Also, the State of Washington, actually, Elizabeth sits on our management committee representing the State of Washington in the Department of Health.
This group came together partially based on some of the frustrations in the past. Some of the things that occurred under HSIS, some of the challenges of trying to get these proprietary EDI networks to link and talk to each other and, again, partially because of the growing presence of the Internet and that has pushed people perhaps to a greater degree of collaboration than may have existed in the past.
In looking at the problem of what should we be doing together, this is what the key stakeholders in our community came up with. First, they wanted to go through a business modelling process and I think for an example, I will take the eligibility transaction since it seems to be one that in a number of communities around the country is being commonly used.
If you look at the eligibility transaction, the first step for the CHITA folks was to say, what does that mean, how was eligibility delivered. How should it be delivered? Again, a strong emphasis on the business model, how does this really work in the marketplace. There are people who have an interest in having eligibility delivered on a batch basis so they could be integrated with practice management systems and people who are satisfied just to look at a browser and be able to look at whether a single individual is eligible but not be able to integrate it.
Second, to move onto the issue of standards and conventions, where there are national standards, we certainly anticipate adopting those standards and using this organization to help promulgate those, to help with implementation. There is no appetite in Washington State to create a unique set of data standards and as has been mentioned I think by both Walter and Elliot, we are very supportive of the move toward national standards.
I think what sometimes doesn't get talked about enough is what we have called conventions because if you go back to the business process, there are technical data standards but, again, take eligibility. What we have in our community is a group of payers who are starting to put eligibility data up on a series of web sites. There is a data standard behind that.
However, in our community there is also an interest, maybe we should have a style guide so that each web site doesn't necessarily look different or perhaps within our community since there are now, there will be 10 different payers with their own web sites. It would be nice to have an eligibility home page. Again, it goes beyond just the standards issue and the focuses on implementation.
Pilots and demonstrations, we could not get the people around the CHITA table unless we promised them that the focus would be on implementation in the market. Again, one of the casualties of the lengthy health care reform debate in Washington is a lot of process fatigue. People don't like coming to committee meetings anymore just to sit and talk. The best industry to be in in Washington State over the last four years was owning meeting rooms. Lots of meetings going on.
So there has got to be a focus on implementation and again, we have a group of organizations, major payers and providers who have committed to implement, to invest the resources to take these standards and conventions and make them work in the marketplace.
Common applications. As we will talk about a little later, I think there is still significant debate as to precisely where the collaboration and where the competition stop and begin but there is a sense that there is probably some limited set of applications that there should only be one of in a marketplace. Again, maybe it is the eligibility home page. Maybe it is something as comprehensive as a master person index. That remains to be fleshed out.
Last, education and outreach. I think both Elliot and Walter have talked about the importance of that. We would wholeheartedly agree. I think, though, it is not just the technical education. Our experience has been that what often happens is you have technologists, informaticists and vendors all sitting together in a room agreeing electronic commerce is a wonderful thing and why aren't we doing more of it. We think it is important to go beyond that group and start to work with individual who impinge on the electronic commerce world but it is not the first thing they think about in the morning.
So again, CHITA is now up and running. We think it is a good model for how to implement some of the work that you are doing in our community. I would second Elliot's suggestion about regional and local resource centers. I think this type of work is best accomplished on the ground on a more local level.
Second, I want to talk about the interagency quality committee. This is a public effort with private participation. I am lucky enough to have a seat on this committee along with a few other private sector people but by and large, this is really an effort of all the state agencies that are involved in health care to work together so Medicaid, the state health care authority, the Department of Health, corrections, workers' comp and so on, have sat down and established three priorities, one being administrative efficiency, second being quality assessment and third the issue of consumer affairs.
This group has been operating roughly the last year or so. It was created in statute and continues through some of the various legislative changes that have gone through. I think it is a wonderful model. I think it has been very good for the agencies to be able to sit down and collaborate. It has been good for the private sector to have sort of one stop shopping when you have an issue. This group, for example, in the administrative efficiency area, has focused on having a unique provider identifier for all their agencies. They are in the process of coordinating credentialling, and just last month for the first time, the state health care authority and the Medicaid folks went out with a single RFP to the marketplace with a single set of performance standards.
I think the potential for state agencies and perhaps federal agencies to use their market clout to collaborate in some of these areas could be among the most important if not the most important force in making some of this stuff really happen in the marketplace.
Public health improvement plan. Again, this is a public process which invites private participation. Again, I have the privilege of sitting on this group with some other private sector folks. This was one of the few aspects of the 1993 Health Care Reform Act that has survived. I think that speaks to its general level of acceptance and the extremely good piece of work that the folks who are involved in that manage to do.
The Public Health Improvement Plan is an attempt to work with the local health jurisdictions and the state and some of their partners in the private community. I think this concept of a linkage between public health and health care has been an important focus of those discussions.
I think it was interesting to read the handout that you folks were talking about this morning on community health assessment. There has been a lot of very good work at the community level in Washington State, I think largely as a result of this process, where you have local health jurisdictions working with health plans and businesses and community groups to assess issues in their communities and try and address programs. I would be less than honest if I said that that is where most of the money is going. The fact remains I think there has still been more talk than there has been action in terms of disability to get the managed care industry, for example, to focus on population health.
There are some notable exceptions. We are involved in a very exciting public-private partnerships. The Foundation is facilitating in the area of immunizations. I think the jury is still out on whether that is going work or not, but that is one of those areas where I think there is clear crossover.
Population health and personal data overlap again. I think the two communities have largely operated in isolation. If we look at something like eligibility again and you begin to think of the aggregation of an eligibility data base and you think of how that might be useful in some population health surveillance, it offers a lot of promise.
Again, I don't believe that the issue of data standards and how it applies to helping solve some of these problems is necessarily well understood. Surveillance. I think we run into the same problem a lot of others do that Elizabeth and I were talking about some of the challenges in surveillance. It is sort of the analyst's dream. Hey, we can link everything about everybody. That, of course, is the privacy advocate's nightmare and when you look at some of the emerging technologies that are not only in the health world but if you look at the way retail products are sold and tracked from a public health perspective, there are some very exciting opportunities to link and track and again I think it just speaks to the importance of the privacy work you are doing. I think in the absence of some good privacy legislation, these things are never going to come to pass.
Last, the performance measurement projects, Washington State has for a long time been involved in a variety of performance assessments. There are a number of quality improvement activities that we have been involved in and I will define quality improvement as something that is designed for an internal provider audience as opposed to external profiling. We have done some work in the area of back pain, obstetrics, cardiac care and a number of others.
What we see developing here is the issue of clinical standards and note that I have quotes around the standards because they are not standards in the term that you would use them. But what has happened in the community is groups of providers and facilities have wanted to measure an outcome of a certain process of care. They have had to get together and sit down and say, what is it that we need to measure and oh, by the way, how are we going to measure that.
So again I think the discussion does not always start out as a standards discussion but whether everybody knows it or not, that is the same issue they are grappling with.
Accountability, Washington State has one of the three demonstration sites for the Foundation for Accountability measures that HCFA is doing. We are in the midst of being involved in the CAPS demonstration. Again, I tend to think more in terms of reporting standards rather than data element standards though obviously one can help lead to the other.
I think there is increasing interest in moving in this direction. It is not all the way there yet but again I think the growing providence of HEDIS, fact, CAPS, give me some hope that we will start moving away from some of the proprietary formats toward more standard formats.
Again, one strong point I would make to the committee, I think there is an educational function. There is a lot of interest in this country right now about accountability, about managed care and worries and anxieties. Again, I would observe that very, very few people connect the difficulties we have with accountability with the difficulties we have in electronic infrastructure and standards and I think if we are going to interest a broader community in some of these subjects, that is one of the challenges we have to tackle.
Some of the lessons learned. I think if there is one thing we came away most strongly with it is to make progress we have got to make the business case. By and large all this electronic commerce is going to occur because paying customers are going to do something. It is not something that by and large is going to be done by government or charitable foundations or even not for profits. If you can't make a business case, it is not going to happen. You may have a set of standards and they will sit on the shelf.
I think one of the lessons that came out of our HSIS experience was the distinction between needs and wants. A want is something you would like to have. A need is something you are willing to pay for and sometimes the process has been driven more by a group of people sitting around the table saying I want to have this and oh, by the way, I assume you will pay for it.
The bottom line tends to be if you look at Washington State, if you look at some of the things that have happened in Iowa, is if people who are expected to pay for things don't see a good reason to do it, they are going to be reluctant to make those investments and a lot of the progress we all hope to see isn't going to happen.
Leveraging enterprise investments, I think we have learned that trying to find those areas where private organizations have already made an investment and showing them how these type of things will leverage that investment increases its value rather that saying write that off and start over again have proven successful for us and it seems clear from the experience we have had and I think some of the other states also that the business transactions are going to pay the freight for clinical, that it is easier for a variety of reasons to get action to get collaboration, on moving forth with some of the business transactions which are also, I believe, the priorities under this act for standardization and that that will hopefully help build an infrastructure that will be there as we start to get ready to do some of the things in the clinical area.
That, by the way, is not a judgment on the value of the business transactions versus clinical or a question of a market reality.
Making partnerships work, because if health care's one to many electronic trading relationships, you can't do this stuff without partnerships. Again, I would look at I think the local level to make these things happen. I think a number of organizations like Walter's, Eliot's and mine have learned a lot of very painful lessons about what it takes to make a partnership work. You have got to have people invested. If you want to play, you have to be willing to pay something. If you just want to talk, you have got to be at a different table than the people who are wiling to pay and I think the question of who sits at which table when is another thing we have learned about.
You may be dealing in an issue that involves everyone but sometimes you have to segment some of those tables so certain groups of people can get something done.
I think lastly this whole question of neutral ground. My organization, Eliot's organization, Walter's, I suspect if you ask us, the key strategic asset that we would describe that we have is our capacity as neutral ground. We are placed where our public sector can collaborate with the private sector, where private sector competitors can collaborate and sometimes where even public sector organizations collaborate. I think in order to make a lot of progress in this area, there is going to be a need for this type of neutral ground.
Legislating standards is nice but our experience has been that that won't get the job done in and of itself. Again, if there is not a willingness to make the investment, it is not going to happen. I think of the various standards that we talked about. Identifiers are clearly the priority. We would be absolutely delighted to have Washington, DC, solve the personal identifier problem. As somebody who headed the confidentiality committee in Washington State, and received a lot of unpleasant comments about Social Security versus something else, I wish you the best of luck, and we will wait hopefully for a solution.
I think again a provider identifier also would be a good solution and my sense is from what I heard this morning, the direction that you are going is very consistent with what most people, at least in my state, would have expected, and I think they would be pleased to see that.
Again you have heard this from both Walter and Elliot but I can't emphasize enough the value of preemptive privacy legislation. To us that would be a tremendous enabler. If you told me that under this act you could only do one thing, frankly I would place a greater priority on this than on the standards. It is ont to diminish the standards but this is a road block that we come up against all the time. It is going to be there. If we don't satisfactorily address this issue, I think a lot of the tremendous advances we are making are going to grind to a half. I don't think it is something that can be done effectively on a state by state basis.
As I mentioned, we are a regional group. If you look at the reality of electronic transactions, they go from North Seattle to Atlanta to South Seattle and I think that is a very common phenomena. So we would very strongly support preemptive privacy legislation. I think that is, even with a fairly decent statute in Washington, I think this is what we have got to do.
Need for education on privacy trade-offs. When I talk to groups of consumers about privacy, again I think there is very little recognition of why we are trying to move toward automation. In fact, there is a clear perception of automation as a de facto threat. There is not a good understanding of the benefits. There is not an understanding that gee, you want to hold managed care accountable but how are we going to get there. I don't think the subject is ever one that is necessarily going to enthrall mass society. People are going to talk about this before the baseball scores.
But I think we can collectively do a much better job of involving people to at least have some level of interest in a more focused discussion. We think that the states should act as a partner. Again, our experience with the state as a legislator has not been as effective in this area but they have been great partners. They are also a major customer. They are a big buyer. We think that using some of that clout in the marketplace to push standards to move some of this along offers great value. We also think looking at the IQC concept that the states and fed should coordinate their own activities. I think it gives additional credibility to the public sector when, instead of having six public sector agencies, each telling you different things, you are working on concert.
I was pleased to hear this morning about some of the activities trying to get state agencies to work together in telemedicine. Again, I think that is a great model and we ought to see more of that.
Last, this question is one that I think we continually come up against and I think it is going to continue to be there for the next few years and that is where the boundaries of collaboration and competition in this whole area really are. I think we have learned that the do-it-all-alone concept, we will each have our own proprietary systems and don't bother me, that has failed. I think we have seen some fairly spectacular failures in the do-it-all-together, some of the CHINS and gigantic data systems as they are called in Washington State, the Great Data System in the Sky, have not worked out very well.
I think the best advice I heard was from one of our CIOs who was explaining why he thought all of a sudden these major health plans want to collaborate is, he said, using Internet technology, we can collaborate on a looser coupling and I really do think that is the model that is going to prove ultimately successful.
What looser coupling means is going to vary a little bit among different communities and I think one of our big challenges at both the federal and the state and even at the industry level is going to be finding that comfort zone. If we don't find areas to collaborate, this job is not going to get done and I think there are some exciting time ahead as we learn the best ways and the best areas to focus our collaborative efforts.
Thank you very much for your attention.
DR. DETMER: Thank you. We will let you turn that off and then rejoin your colleagues. I know I speak for the committee in thanking each of you. In fact, I think if we were still out in California having hearings or somewhere, we might say, golly, that was great. But we are here in Washington. It was excellent and I thank you very much and let's open this now because obviously there is a wealth of both hard earned experience as well as a lot of hard work and progress so let's open this up.
DR. STARFIELD: I have a question. Perhaps some of you or all of you have seen the recent issue of Health Affairs. There was an article in there that gave a chronology of the Hartford grants and by and large said it was a royal failure. There were one or two states, I think Minnesota was one of the states that did pretty well with it but still had a long way to go.
You have done a really good job in telling us what you have done well but you haven't really told us what you haven't been able to do so I would like to hear about that and how will HIPAA help that.
DR. RUBIN: Having been, I am aware of Dr. Star's article. Having been involved with the Washington State CHMIS, I think most of the sort of lessons that I went through there are lessons that we learned through that painful process. I mean, I think very quickly if you look at some of the original thinking, it was large central data repository was going to drive everything else. I think that was not consistent with what the marketplace wanted. It was not consistent with the comfort level of key participants who needed to invest in this. It was not consistent with some of the privacy issues and even as technology developed, it was not consistent along those lines.
Again, I think it was driven more by a set of social or policy wants rather than a greater recognition of the business needs and I think those original CHMIS sites like Washington and Minnesota and some others, that have continued, were the ones that were able to learn that and reorient their activities to more of a bottom-up, much more of an incrementally focused process.
I think that in some respects what we are seeing through your deliberations are very consistent with some of the lessons we have learned, addressing privacy right up front in the absence of preemptive privacy legislation was a millstone around all of our necks and continues to be to this day.
Secondly, in the issue of standards, to some degree I think some of the initiatives were considered to be too big to be true. Again, there wasn't this sense of believability that there were ever going to be standards and therefore why should we waste our time and energy trying to have this linkage so again, I think the type of effort that you are pushing here will help raise credibility in the belief that something is coming. We better get prepared for it. We are going to have to make some investments to adopt to standards. We might as well work to get it to do that. I guess I would add as a final comment that I think another lesson we learned is focusing more on the business transactions, eligibilities, remittance, claims, enrollment. Those sorts of things. There appears to be a greater willingness to make an investments in those areas. There are already more in electronic forum. There are fewer privacy issues involved though there are still privacy issues.
MR. STONE: I would say that one of the things you have to recognize is that the Health Information Portability and Accountability Act came out of a groundswell from the states and a lot of other national organizations and so there have been people sort of laboring in the wilderness on this to make it happen. We were prepared as Minnesota and Washington was to try to go it without federal legislation to make standards happen so in terms of the answer to your question about what we haven't been able to do, I think on the curve of the diffusion of innovation, we are still at the very early adopter stage. We have got some leadership. We have got maybe 10 percent of the leaders willing to do these things and what we haven't been able to do is get to that critical mass and that is what federal legislation does. It gives everyone no other option.
I have to tell you that there is really no opposition to that. There is no opposition to anything that you are doing. Everyone is just sort of waiting to be the first penguin to jump off the iceberg and you are going to make it easier for them to do that and so that is why this is a monumental effort for all the things we are trying to do, whether it is performance measurement or looking at our public health needs. We really think this is an opportunity to do the linkage we have never been able to do before. Private sector data bases to public sector data bases, because of the standards that you are going to promulgate.
That is why implementation is so important to us. You are not going to be able to just put these standards out there and walk away. We are stuck with the heavy lifting at the local level and this is just one step forward and we are trying, we don't know how to do it and we are going to try to learn together, learn from you, how do you get to a point where we have an analogy to the fax machine. One day there is two people with a fax machine and then people a year later have fax machines in their cars and homes and there is something about that diffusion of innovation that we have to learn about that makes these things ubiquitous.
DR. DETMER: Just to underscore the implementation, we do have a subcommittee of our executive committee on planning and implementation so I would encourage all of you to, as you see things, to interface with us on these because it is not a one-shot thing by a long shot.
MR. STONE: I would say, just to segue to the patient identifier, we have learned, I have learned an extremely valuable lesson from Rick Rubin and Walter Suarez on, and from people like Kathleen Frawley about the master patient index concept.
I think there are ways that we can attack the unique patient identifier by kind of swerving to the left or the right on this one and still make something happen at the local level. I think if you are willing to experiment with projects in the states, community-wide master patient index projects, I think that we can get to a unique patient identifier over time but if we spend most of our time trying to focus on the number, I think it is a non-starter but we find tremendous acceptance for the idea of community-wide patient index projects were there are enterprises now working it out. We have Partners Health Care System in Boston which is a group of five or six facilities and they have developed enterprise wide patient index project and what our job would be would be to take that a level higher to make sure that the enterprises are linked one to another, perhaps with different identifiers but that they can be indexed.
That is a lesson that I have learned from some of you and from some of the other states, that there are ways to get something done without necessarily focusing on the number.
DR. GELLMAN: All three of you indicated a preference for some kind of federal privacy legislation and two of you spoke of a desire to have more stringent state laws prevail and I would like to explore that issue just a bit.
Suppose for example that the Federal Government in the interest of privacy establishes a 40-bit key length for encryption and one state decides that that is not strong enough and has a 56-bit key length and the next state has a 128-bit and so on. Do you think that is a good idea?
DR. SUAREZ: I think in that case it might not be a good idea. I think it might be challenging to have a system across the United States that has multiple key length of security systems. I think it was Mayo Clinic who presented a couple of days ago in Minnesota about how they are using actually one K or 1,000 key encryption system and they believe that that is the minimum security they would accept to do any kind of encrypted transfer over public lines.
I think if the case was to try to establish some kind of a standard, I would err in that case towards a more stringent standard rather than a lower common denominator and then try to have states actually agree on that level and probably if the standard is stringent enough, the states are not going to push it higher than that, there is not going to be an issue of local communities deciding to use a more stringent one.
MR. STONE: Bob, I think your question frames the problem. I have the privilege of being on the National Research Council Committee on National Cryptography Policy. I actually know what you are talking about. But the problem is that most people don't know what you are talking about and so I think first we have to build an awareness of the need for an encryption. We have to build a case for the need for public-private keys. We are going to have a special interest group working with the state agency on public key encryption but when we, when I was serving on the NRC committee, I surveyed a lot of the hospitals and health plans about what they were doing with encryption and as both the, in both studies of the National Research Council found, the most recently one on the electronic record and the one on cryptography policy found that within hospitals and health plans the caregiver relationship overrode the use of encryption and public-private keys. When the physician wanted access to the data, they wanted access to the data now, and they didn't want to go through a lot of different security rigmaroles.
It has been very frustrating for security officers to deal with that problem so we have a problem just convincing people in the know that they have to start using encryption when they are sending information from point to point so our recommendation locally is that we not get into the discussion about 40-bit, 56-bit, 1,000-bit but that we just mandate that they use it and that we work out locally some of these issues and I would defer also to the recommendations of the National Research Council on the 56-bit key, for example.
DR. GELLMAN: Let me come back, I mean, I think your points on encryption are fine. I am really harping on the issue of more stringent state laws. Let me throw you a different example. There are federal laws that require various officials or allow various officials in the Federal Government to get access to health records through a variety of procedures. A state could arguably pass a more stringent law that denies access to these federal officials, health records in their state. Do you think in the interest of having more stringent privacy laws prevail that that should be permitted?
MR. RUBIN: Without talking about the specifics of either of the two examples, just the principle that you are talking about, and I have sort of agonized somewhat over this issue but I guess I would come down to say that I would personally prefer a preemptive federal regulation, federal law, that does not allow a lot of customization at the state level. I think more and more we have seen that health care, at least in our part of the world, health care is being delivered on a regional basis and to take your first example and the impact that that would have on some of the health organizations that operate in our part of the country, I think it would have a negative impact. I think it would be another reason not to do certain things.
There is always a trade-off with the local customization but you have to come down on the black or white side. I think this is one area, because of the nature of the issue, because of the fact that we have spent so much time arguing about the law or laws and not enough time protecting privacy and implementing that there is a significant advantage both locally and nationally to sort of shelving that debate for a little while, have a piece of preemptive legislation and then we will learn about the unintended consequences of that legislation just as we have of all others but I would come down more on the side of less discretion at the state level, even on a more stringent basis.
DR. SUAREZ: If I may comment on that, too, my sense is that on a case by case basis you will have to deal with some of those issues. There is examples of where states can take a more stringent, if you will, aggressive timeline, for example, of implementing some of the standards defined by federal legislation. So timeline is one area where states might decide to move faster than the federal legislation.
Other examples are implementation of transactions beyond the ones that are being talked about at the federal legislation so there is, on a case by case basis you almost have to look at see, does it make sense to decide this at the federal level or do we allow some discretion at the state level to deal with more stringent regulations. I think it is going to be done on a case by case basis.
MR. STONE: Our attorney general and his staff I know would be more than willing to work with this committee to see if there is sort of uniform agreement on principles so we could take each of these examples that you have come up with and test them against the principles that we all believe in. Right now we are under assault on the consent issue locally and we are not going to be able to dodge that bullet. Something is going to happen in our state legislature on the consent issue and also health services researchers are under attack with some legislation right now in our state legislature and we think health services research is in jeopardy because of some of the legislation that is being proposed and it will relate to this consent issue as well, sort of like opting in and opting out of data bases but I know that our legislature wants to see health services research go forward and they want to somehow bridge both camps here and keep the privacy advocates happy locally.
I think the most important issues we are going to have to deal with are employer access to information, not necessarily federal access to information but employer access and in this regard I hope there will be a lot of coordination with the people who know something about ERISA and talk about how we can do something about that because that is where all of the anxiety is over employer access to information as well as the consent.
DR. GELLMAN: Well, let me just make a comment and I think you have sort of made the point that I wanted to make and that is the preemption issue is very hard and there are very good arguments on both sides but that it is very difficult to approach simply on the basis of more stringent state laws should be allowed to stand. The issue is a lot more complicated than that and you run into some extremely difficult questions that really undermine the principle of more stringent state laws should work.
MR. STONE: I just encourage you to, our attorney general's staff is very knowledgeable on this topic as you know and I just encourage you to work with the attorneys general as much as you can. They serve on our work groups and I know they would be a wonderful resource for you.
DR. DETMER: Hortensia and then Clem and George.
DR. AMARO: I wanted to go back to some issues of implementation and just hear a little bit more from you about your experience. You are in touch with the agencies that are going to have to implement all these changes and we had some concerns that we have discussed both in subcommittee and in the larger committee in our previous meeting regarding it is clear what the advantages are to developing these systems but when it comes to issues of implementations, there are many providers that don't have the kind of technology that is required and after our last meeting I went back to Boston, I was reassured that this is an issue for many people and found out that even in our community health center, many places don't even have the kind of technology and if that is the case in Boston, it is certainly going to be the case in other cities.
So I was wondering what your experience has been in the proportion of providers and the types of providers that this will impact. I am looking at the Minnesota page 13 survey report and in here you have a little bit of information about the kinds of facilities, the kinds of resources available to facilities in terms of Internet access, e-mail, web site but even lower level than that. Can you talk to us about what is your experience around the number and type of providers and what do you think needs to be done to build readiness among those providers who build their systems so they are able to participate and gain full benefit from this kind of data system?
DR. SUAREZ: Our principle has always been that EDI is useful even for sending one claim and that is kind of our standard, bottom line message. We understand beyond that clearly that there is a need to develop and build a business case for even a large, whether there is a large or small organization that has the interest or is being asked to move into the EDI world, if you will.
We have found that a large number of very small providers, and I want to focus on the providers because I think the providers are the ones that are key in implementing EDI. I think in the state, most of our health plans and payers are ready to receive electronic claims even using the 837 standard and then they are already sending out 835s, claim payments but what they are not seeing is the 837 coming in and we have found that the smaller, certainly the provider group, the unless likely to have even a computer system available to do this. Thus the importance of not just requiring and I think that is certainly the way the legislation is written, requiring the actual provider, whether it is a one or two physician clinic or whether it is a very large clinic to be the one to do the standard but maybe use other means of accessing and doing the standard.
For example, the use of clearinghouses and that is one of the things that we have noted as a way of promoting the use of the EDI is that this clinics, the smaller clinics and hospitals and provider groups, they are not interested at this point probably in investing a significant amount of money for them in computer systems and enhancing their ability to submit that.
They are interested in finding other ways to communicate electronically via, for example, clearinghouses. I think the other element is also the key role played by the practice management software vendors that provide the software for those clinics that have the computer system and are using that to maintain their billing and all their information.
We are working in the state with those vendors. We are somewhat fortunate that in this state there is a very high concentration of practice management software managers and a small number of those so we are working with them to allow their system to begin talking EDI standards. But it is a challenge and we have been going out basically talking about the benefits and talking about the utility, even for those small clinics but still it is going to be a decision down to the clinic level to decide whether they want to move into that direction or whether they want to use an alternative way like a clearinghouse.
DR. AMARO: Let me just say before you go on that my concern is not only with business level data but the clinical level data which adds --
DR. SUAREZ: The clinical level data is even years behind the business level data. Our surveys have found that there is some movement towards electronic medical records but that is still a very, at an even earlier stage than just EDI standards.
DR. AMARO: Do you have information on like what percent of the people in your network have --
DR. SUAREZ: We do have actually electronic medical records. In our survey we focus on that and I am not sure if some of the summary results that I included include that specific point where we did ask and provided a percentage of the people that have implemented electronic medical records.
DR. AMARO: Yes, it is 23 percent.
DR. SUAREZ: Yes, that is the number. It is very, very, very low compared to the administrative transactions certainly because that is the business side of it.
MR. RUBIN: I think to elaborate on Walter's remarks, in Washington we have done a couple of different surveys. I think it is probably fair to say that you usually end up with a number that 80 percent of physicians, for example, have computers, 20 percent know how to use them. It is, the question of having a computer in your office and making use of that are very different issues.
I mentioned some of the proprietary EDI networks. If you look at the number of installations they had and you compare that to the number of active installations, you see a startling distinction. What some of the payers have done is literally give the box away. We will stick this box on your desk and it is free. Well, you end up with a bookcase and something that gathers dust.
So I think part of the issue is in getting the technology into the office but the reason I made the point I did several times about the business case is I think that is where the distinction lies. How many people who have cable TV in their homes would have made that investment if all they saw 20 hours a day was the national network, meaning nothing against the national network. That is not the content that pulled people in. It was a lot of other areas.
I think the conclusion we have come to is we are not going to mandate providers and it goes well beyond physicians, by the way, we are not going to mandate providers to make use of technology in the way they do their work. We are going to have to make it in their interest. We are going to have to offer them benefits. I know Dr. Detmer talked earlier about consumers and I would agree with you that I think that is the brilliant frontier for the future and the same is true.
You know, you could give the machines away to people, to the degree that there is not content that they find useful to give them information in a manner they find useful at the time they find it necessary. They are not going to bother and we have started to look at, I mean, the physician community, if you will, is one thing but in Washington state, for example, we have a rather odd and currently in litigation law dealing with alternative providers.
That is a huge and growing industry out there, very few of whom are now making use of EDI and so to us, I think there is an educational effort for some of the rural providers. It may come down to revolving loan accounts and grants to buy technology but more than anything else, I believe it is going to come down to this sort of parallel development of content and applications and services that these folks find useful and interesting and that is, if you look at the kind of activities we are engaged in, it tends to be sort of this lockstep of some content and some applications and some connectivity and some contact and some applications and some connectivity and I think that is the way you make progress.
I don't think just giving someone a box or even again passing a law is going to solve the problem and I think in states with large rural areas, this problem is much more profound. A technology in some of those areas means a telephone and maybe a fax machine.
MR. STONE: Dr. Amaro, I would also just add to that that every one of those providers that you are talking about has a relationship with a pair, with a health plan, whether it be Medicaid or a private sector health plan, hence that relationship that I think is going to enable the provider whether they be a small provider or a major provider to have connectivity to everything that is out there, and that is why we are exploring very actively the Internet browser technology as well because that is another low cost way and it will be the responsibility of those health plans to not put any barriers in the place of those providers, those small providers. They don't want 10 difference boxes on their desk to talk to 10 different payers.
DR. MC DONALD: I just wanted to come back to the subject of the differences between states and I think and separate out the issue about whether you have to use computers. I think that is a, I think Rick said it exactly right.
The real issue, if you are going to use electronic methods, you do it the same way, and we have seen this in the general standards groups. Everybody likes standards except they want to do their own thing their own way. I mean, as long as it doesn't exactly apply to them. That is just sort of, it is either the tragedy of comments or it is just the most incoherent sort of way of thinking about this. I think if you are going to say you want to standardize that kind of stuff, you can't say but we are going to do what we come up with also. I just don't see how you can get by with that. Either you say you don't like standards and you are just going to run amuck or say you are going to try to do it together.
MR. RUBIN: I would agree. I think we found the same thing that everyone is in favor of standards as long as it is theirs. You never find any disagreement on the concept of standards. We haven't in our community. It is making the conversion from your standard to a generally accepted standard and, again, I think we are starting to see more support for that concept and again I don't mean to over-emphasize the Internet but I really think that has had a dramatic difference in influencing the way people who have not been involved, not slogged through as some of the people around this table have for years, trying to solve the standards problem.
All of a sudden, the visibility of the issue has been raised and I think the believability to some degree has been raised so I don't think you would get much argument in our community or probably in most of the communities about the need to push more in that national direction. A lot of the regional health care organizations are becoming national health care organizations, soon to become probably international health organizations.
I heard in some of the presentations this morning about some things going on overseas that will impact our ability to interact and exchange information so I think the good news is the trends are in that direction but it is not a battle that has been won yet.
DR. SUAREZ: At the community level, we did see that transition. When we started back in 1994, before any of the legislation and educational legislation was up, we knew the community participants knew about the risks of moving too fast, too much forward in terms of trying to implement some standards and immediately as we knew and found out that there was going to be a national effort through ANSI to try to develop the implementation guides because that is one of the things that really, the standards. Everybody agrees on the 837 there is one standard but there is 400 different implementation guides and that is one of the biggest problems in the standard setting groups.
When we heard and knew that ANSI was going to be taking on the development of a national implementation guide standard, we immediately stopped our work at the local level and began actually shifting towards a, participating very actively in the national setting group, and I think everybody in the state is very much following and will be endorsing basically the implementation of the national guide instead of any type of effort at the local community.
MR. STONE: Clem, we talk about the differences but one other thing that is common among our three states is large managed care penetration and where we have a significant number of managed care plans, we have seen a huge change in the attitude toward standards because, in a positive way, and most of the physicians belong to almost every one of the plans. Most of the hospitals with a few big public exceptions belong to most of the plans. And because of our market based approach in Massachusetts, Minnesota and Washington, there is, it has highlighted the need for this kind of standardization and networking because the doctors don't want 10 boxes on their desk for eligibility and the health plans realize that they must reach out in some creative way in a uniform way.
Most employees will go through most of those health plans in a lifetime, six or seven health plans in their lifetime and their information needs to be portable and I think the last point is that because we are at such an intensely competitive area with some first class health plans in our area, that they have all realized that the patient or the customer at health plan A could someday be the customer at health plan B so it is in their interest to have that information that is now sitting in their competitor's data base be standardized so that when it comes over to their data base after they steal that customer away, that they will have a more complete medical history and it is to their advantage.
DR. MC DONALD: I was really responding to the variation in the security view which is going to destroy all the rest of it and the idea that you are going to have completely different kind of schemes. People emphasize the Internet as enabling. Internet is actually the best example of standards development on Earth. Actually what it really is is 2,000 interlocking standards and they have one for shipping encrypted information in e-mail or at least it is just about to come out and that is what people should be talking toward instead of saying we want to do it our way. That was the thing I was reacting to.
MR. RUBIN: It is interesting. I have a particular experience around that. We, as I mentioned, have some proprietary EDI network that has fought tooth and nail to do things their way and literally one day one of the operators of those networks came to this table and said, you know what? I have got religion. Just out of the blue he said you are going to have to throw away a lot of the things you have done. You are going to have to throw away a lot of things you have done. You are going to have to throw away a lot of things you have done. I am going to have to throw away a lot of things I have done. This is where it is going, and this is an individual who I think was pretty entrenched for good business reasons in a more proprietary approach.
And the security piece, again, that just seems to have been happening with greater regularity of late and I think for that reason the timing of this activity, this is another big enabler and I think the fact the two of them are occurring together offers a much greater promise for success than if this law had been passed five years ago.
MR. STONE: Don, I just wanted to throw one back to the committee at some point, raised by some of the leadership in our project and maybe it is the implementation committee. I hope, I don't know where it is on your agenda, if at all, but the issue of archival and record retention has been coming up and if we are talking about information portability from one health plan to another and one physician to another, I think we need to begin to set up some standards about how long information should be archived and retained at each of the points of service in that standardized format.
DR. DETMER: We are aware of it but we haven't studied it. It is an excellent suggestion. George van Amburg.
MR. VAN AMBURG: Yes, change the topic a little bit to the public health side. Dr. Suarez, you mentioned in your comments that there would be significant benefits to population based registries for public health purposes if there was some interchange standards. Could you list some of those benefits and how do you see that being implemented on the public side?
DR. SUAREZ: What I was referring to was a benefit that would be brought into public health efforts by using standards for population based type of activities, registries. One example, in fact, in this state, we were working towards developing some kind of an immunization registry and for a number of privacy reasons actually it didn't happen but one of the things we had a long discussion about was what kind of standards to use in terms of exchanging the data from the different points where immunization data exists.
Unfortunately, there is not any standard except that HL-70 is working on actually some kind of a transaction. It is published and we looked at that one but it is very, very complex and we were driven to well, which one we use, whether we use a standard flat file type of transaction or whether we try to implement HL-7. In many cases, these points of care where the data was residing and where the care was being provided didn't even have a computer even for doing the transfers or doing the access of the data. So in that respect is what I refer to as some of the benefits of having standards for population based registries.
Also, standards in terms of data privacy. I think that is one of the things that didn't allow Minnesota to move towards immunization registries this year was because we didn't have it through data privacy standard. There was a number of discussions at the legislature this year trying to understand what kind of privacy was around an immunization registry.
So the benefits of standardizing from a data content, data transaction perspective as well as a data privacy perspective will directly benefit, will directly bring about the ability to create and use population based registries for public health purposes.
DR. MOR: I want to get back to the issue of implementation. There is a subcommittee here that is going to be struggling with that issue. We discussed a little ago recommending to the Secretary that some kind of dynamic be set up so that we re-examine on an ongoing basis or some structure would be existing to examine on an ongoing basis code sets and other aspects of the whole, of the HIPAA on general.
But several of you mentioned the notion of regional technical assistance or technical assistance sites. Would you comment on what you had in mind a little more specifically and whether that is something that the committee should actually take into consideration in terms of a recommendation and how might that function, why should it be regional as opposed to national, 800 numbers and so on and so forth.
MR. STONE: I will take a first stab at it but I think we each feel pretty strongly about it. The reason I think we need, they need to be regional is that that is where the relationships are. Not everybody goes to ANSI meetings and WEDI meetings and it is pretty hard for everybody to keep up with it and so what we try to do is have that expertise be close to the people who are working on the problem so I feel strongly it should be regional.
Education is one of the biggest components and again, educationally people don't want to go off to spend a couple of thousand dollars to have to go off to national meetings to learn about these things. We found that if the meetings are local, the training is local, health plans, hospitals, physician groups are more likely to send their whole staff. I mean, they will send dozens of people to a meeting for a couple hundred bucks instead of sending one person to a meeting in the Midwest to pick it up.
So for education to be effective, again, sort of the diffusion curve. We want as many people inside the organization to understand what the heck we are talking about. One of these days, you should open up one of these ANSI X-12 837 manuals and see what the local folks are up against in terms of implementing these things. I commend that to the implementation group and so those are the people who are going to sit down, page by page and figure out how to do it.
What we found in retrospect, and the same thing that Walter discovered. First our group started off designing implementation guides. We now say implementation guides should be done at the national level. We feel strongly about that. And we have scrapped doing what we are doing on that, again, we did it before WEDI was taking it on or ANSI was taking it on.
But what we found also is that there is a lot of discretionary stuff in those ANSI manuals that say user-defined or state-defined or something. That is were there is a lot of latitude. Again, locally, that is where it is bets to work it out. As Rick has said, standards come about because everybody comes to the table and puts everything in that they want so you have a standard that is like this wide and you find out when you are implementing it, you may only need it to be this much stuff to have the transection work between hospital A and health plan D. You might only need this much stuff.
So we take the standard and we really boil it down and we work locally on coding definitions but again that would be easy for us to dial up your dictionary and use your data sets in the absence of those national things. We are going to do it and we will propose it to you so education we feel absolutely had to be at the local level to get everyone involved. I can't stress enough how many people still don't even know about this.
We just, it is dawning on a lot of people all of a sudden and even some of the people who have been actively involved with us, I think they have finally gotten the message that you are going to be aware of it.
Last is test sites. We would encourage you in the implementation project to have a lot of time in there for beta testing these things out and giving you some feedback and bringing the people together who are doing the testing. That is the relationship that we have established with CDC and with HCFA for their NPI and that is a terrific relationship. We learn a lot from them, they learn from us so I think test sites should be an important feedback mechanism.
DR. SUAREZ: I included in the packet that I provided an example and that could be a model for how these electronic commerce resource centers could be, it is in the right hand side pocket of the packet is behind basically the first page and it is a copy of the web page of the national electronic commerce resource center developed by the Department of Defense to basically promote the use of electronic commerce among the Department of Defense. They have different regional DCRC sites and the mission of DCRC, I am reading it on the second page, is to promote awareness and implementation of electronic commerce and related technologies into the U.S. integrated civil military industrial base.
Basically that is the main concept is that in order to fulfill the needs and the facilitate implementation of the EDI standards in health care, these are the kind of efforts that need to be put in place at the local and regional level. In our own case, the Minnesota Center for Health Care EDI has been very actively producing and providing education and training both locally in Minnesota as well as regionally in states around Minnesota. We have even come to Washington and we are going to Boston in a couple of weeks.
DR. MOR: The question, I guess, in hearing these comments, differentiates between education at the local level versus technical assistance with definitions, software patches, those kind of things which don't necessarily have to be local but have to be understood sufficiently by the local educators.
MR. RUBIN: I would make, I was just about to make the distinction between tools and assistance. I think the provision of tools at a national level makes a lot of sense. One model I would suggest you look at is what AHCPR has done with the CAPS survey. I think that is an excellent model of how the Federal Government, working in collaboration with some private interests and some academic researchers are creating a series of tools, what amounts to a standard template that is, I think, going to enjoy very wide support and they are very clear to say this is going to be implemented locally but they have provided a series of tools from the survey, the standard itself to reporting templates to an automated reporting template and so on.
I think to a user's network and so I think to generate tools and applications at a national level and then have regional or local means to distribute those makes a lot of sense. I think in addition to the educational function that has been talked about by Walter, I think this type of resource center can do a lot in terms of priority setting within a given region because there are going to be a series of standards and again our experience has been those get implemented in different markets and different ways and having critical mass in a given area come together and agree that we are going to start to roll this out and this out and this out, it gets back to the implementation question. For example, if you want a physician to invest in a computer and buy a browser, you can say to them, well, one reason for doing this is that of the eight payers you do business with, and, by the way, Medicare and Medicaid also, with this one pane of glass you can access their eligibility.
And so I think these local or regional areas could be very helpful in bringing critical mass together and again, I would just emphasize the other advantage that they may have is this capacity to act as neutral ground. I have no doubt, for example, that vendors will work to educate their users, health plans will work to educate their providers and so on. But there is always a certain tension that exists there because of competitive pressures or turf issues or political issues.
And having the type of capacity to be neutral where people can feel safe when they come together and share information, I think would be of great value.
MR. STONE: And it is one thing we can do also is monitor compliance. We can give feedback to the national committee on just how it is going. What is the compliance level locally so folks aren't blowing smoke at you in terms of what is really happening out there, number one. And again we are trying to learn about how to diffuse technology. We turn to people who are just coming to understand the science of the diffusion of technology and I would recommend the committee staff talk with Professor Everett Rogers out at the University of New Mexico and Professor Tom Valenti at Johns Hopkins who really knows something about this topic.
DR. DETMER: We have two more questions, only about five more minutes so maybe we could give briefer answers to those so we can still get our time.
MR. SCANLON: Two quick questions. There seems to be a fair amount of agreement on what the standards, at least the transaction standards should be to be adopted. There appears to be a fair amount of agreement on any international implementation guides and tools and so on. In terms of an implementation schedule, do you have any advice to give the committee in terms of the schedule that is outlined in the law and secondly is there a role for incentives in terms of getting standards adopted and, if so, what experiences have you had in your states?
DR. SUAREZ: Maybe I can take it first here. In terms of the implementation schedule, what happened actually with Minnesota was we had to push our implementation schedule. Our implementation started 1-1-98 and now we are tied completely with a HIPAA station in terms of implementing and we see no issues in terms of implementation.
In terms of the, what was the second part of your question? Incentives. Yes, we did introduce some incentives, concepts to how to promote the use of EDI. At some point even in the original legislation that we passed in Minnesota we thought of some credits for physicians and provider groups to buy the technology to do it and those kind of things didn't go well with the legislature and it was decided that basically the incentives have to be identified within the market and the business case has to be made.
My sense is that the biggest incentive is going to come from the ability of providers to identify the benefit by getting paid sooner, for example, or fast, and those kind of things. Those are just primarily education type of incentives. You tell people here is exactly how things will be beneficial for you.
MR. STONE: Jim, We have found probably the biggest incentive can come from accrediting bodies, and we would strongly encourage you to discuss these kinds of incentives with JCHO, with NCQA, any group that is willing to put something about the use of standards into their accrediting process and this has already been mentioned in the NCQA information systems roadmap. They have put together a timetable and some recommendations on standards. We are talking to our local health care purchasers group about including language like this into their model contracts with their health plans. You say that they have an expectation of standards and confidentiality and that is going down really well with the purchaser group, and we don't notice any major opposition from the providers of the health plans.
With that particular type of incentive on the schedule all I can say is don't bend. That would be the biggest thing that would help us.
MR. RUBIN: I think it is going to be difficult to come up with an incentive that is going to be meaningful that won't break the bank other than the fact that there is useful information out there to get. I think that is a real incentive that there is a business need or a clinical need to do this. I think that the use of the contracting mechanism which perhaps is a reverse incentive, if there is one thing, for example, that the Federal Government can do, I think using its purchasing clout, is going to have far more effect in the marketplace to say if you want to do business with us this is what we want to do.
That is certainly the way other industries, you know, if you want to be a supplier to certain large industries, you adapt the new CDI standards or you don't do business with them. So I don't mean that to sound punitive but I think frankly in the marketplace, that is going to have more impact if large purchasers say certain aspects of electronic commerce are how we want to do business.
I think on the implementation side, I would probably lean more heavily on the big gorillas in the marketplace -- managed care plans, public purchasers, to have their act together in order to give them time to deploy capability. That then makes it attractive for the smaller planers for whom the investment is going to be more problematic.
I think you need to give them a little bit of time to see that there is something, that there is a reason do to this.
DR. DETMER: Elliot and Walter and Rick, we thank you very much. I think this has been very useful. We have kind of run out of time. My question actually, if you could send some information to us, it came up over and over again, the education piece and all of this. It is really critical. We do also have a subcommittee of the executive committee on the issue of public education and whether it is a set of stakeholders, you can't get into it now but if you could get us some thoughts on that I think it would be very useful to us as well.
Thank you very much. That was very helpful. We will be adjourning for lunch. Lunch for the committee will be downstairs in the Atrium Restaurant. There is apparently a Quark Room. That is what I was informed. Anyway, it is in the Atrium Restaurant and there is a buffet table there and the tables are reserved apparently for our group, they are already set, in the open area beneath the escalator. In the fine American traditions of there being no free lunch, we will pay $9.95 for that so you need to be aware of that.
We will return following our post-prandial break here to get into our privacy recommendations. I thank you very much.
(Whereupon, the meeting was recessed for lunch at 12:30 p.m.)