Public Health Service

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

Executive Subcommittee:

November 27, 2000

Washington, D.C.

- Minutes -

The NCVHS Executive Subcommittee met on November 27, 2000 in the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public.

PARTICIPANTS:

Executive Subcommittee Members:

Staff and Liaisons:

Others:


MEETING SUMMARY

ACTIONS

Strategic Planning Discussion:

Dr. Lumpkin asked the Subcommittee to consider how the full Committee can assist the Department in looking at how information policy could help meet the overall strategy of eliminating disparities. The Subcommittee discussed and will continue to consider how the internal structure can be modified toward this end.

It was proposed that the Subcommittee determine a set of priorities based upon Healthy People 2010.

Ms. Coltin asked the group to think about how the health strategies laid out in the Government Performance and Results Act (GPRA) document and others the government shared in partnership with the private sector relate to the roles of the subcommittees.

Each subcommittee and work group was asked to consider and report back to the Committee on how it will address the issue of getting better information to eliminate disparities.

Dr. Lumpkin urged the Subcommittee to get more involved in technical details of health disparities issues than in other areas where content-expert groups develop standards the group can review and anoint.

Dr. Iezzoni recommended building on the Committee’s prior work on disparities; she suggested inviting Dr. Risa Lavizzo-Mourey to discuss what she would have liked to see done with the substantial report on poverty and the health care consequences that she wrote for the NCVHS in 1991.

Dr. Starfield suggested that the Subcommittee focus on a category of determinants of health and data.

Mr. Scanlon noted that there are disparities in the census that need to be measured and monitored, and suggested the Subcommittee will want to stay involved with the need for this kind of information.

The Privacy Subcommittee was asked to look at issues related to eliminating disparities.

Dr. Lumpkin will ask for the Privacy Subcommittee's advice on Wednesday regarding dispersing the privacy experts to all the committees.

It was suggested that the Population Subcommittee address issues of priority in relationship to broad population health. The Subcommittee also was encouraged to help develop a working definition of disparities and focus on barriers to population and disparity research.

Other Meeting Actions:

The Subcommittee noted to decide on a title for the ICIDH report the next day.

The 50th Anniversary symposium summary was sent forward for approval. The Subcommittee amended a detail of the history; the document will be revised based on the discussion and subsequent input and approved in the January conference call.

During the transition, meetings will be scheduled with new agency heads that deal with the Committee to offer its services on issues and discuss the Committee’s concerns

The Subcommittee planned the February and upcoming meetings. (See summaries below.) Members will be polled to schedule a January conference call to review the February agenda and a date for the spring meeting, after checking Dr. Lumpkin’s calendar.


EXECUTIVE SUMMARY

The Subcommittee conducted the following business: (1) 50th Anniversary Symposium summary and history, (2) strategic planning discussion, (3) transition to new Administration, (4) planning for February 21-22, 2001 meeting,

The symposium summary was sent forward for the full Committee’s approval. The group amended a detail of the history; the revised document will be approved in a conference call and presented to the Committee.

The day’s strategic planning discussion centered on two key issues: refocusing the Committee on population health and aligning health information strategies with health strategies. The Subcommittee considered ways to provide assistance the Department might need in realizing how information policy could help meet the overall strategy of eliminating disparities. The group addressed how the internal structure can be modified to achieve this end.

The group talked at length about the transition. They noted, whatever happens, the administration would “get off the ground slowly” and there would be an extended need for orientation. Mr. Scanlon said meetings would be scheduled with agency heads that deal with the Committee to offer its services on issues and discuss the Committee’s concerns.


DETAILED MEETING SUMMARY

November 27, 2000

50th Anniversary Symposium Summary and History

The group discussed components of The 50th Anniversary Symposium Proceedings, which will probably be produced as a single document including the symposium summary, history, and two interim reports. Dr. Lumpkin noted the history, “The NCVHS committee, 1949-1999,” was a fairly good encapsulization of “where we are heading and the kind of issues we struggle with.” Dr. Starfield observed she thought she had known the history and “discovered I didn't.” Dr. Fitzmaurice considered it a model of how a federal advisory committee can work “in or out of conjunction at times” with the Department. He questioned a detail of the history and the group clarified and amended the reference. Mr. Scanlon and Ms. Kanaan emphasized the importance of tone and emphasis. The history will be revised on the basis of the discussion and subsequent input from the Subcommittee and full Committee, and the final draft approved by the Executive Committee in a conference call. The document will be available for the Committee’s comment, approval, and adoption at the next meeting. No changes were suggested in the symposium summary, which was moved to the next day’s agenda for approval by the full Committee.

Strategic Planning Discussion

Dr. Lumpkin initiated the day’s discussion on two key issues: refocusing the Committee on population health and aligning health information strategies with health strategies. Noting the Committee had a long track record on both issues, he clarified the intent was to focus on how things the Committee chose that were not mandated by HIPAA remain consistent with this approach and strategy. He noted the Committee had mostly worked out how it would interact with NCHS and develop a working relationship with the Board of Scientific Advisors, once approved. The remaining issue within the internal structure was how to establish what these health strategies were, then align and gain engagement for the information aspects.

Dr. Lumpkin emphasized the need to address health strategies the Department selected, and find a way to monitor them on an ongoing basis. He noted the Department’s major priority was eliminating disparities, the theme throughout Healthy People 2010. The question he posed was how to provide assistance the Department might need in looking at how information policy could help meet the overall strategy of eliminating disparities.

The second part of the discussion, he explained, would address how to modify internal structure to achieve this end. He expressed concern that, in trying to unite the Population Subcommittee around the goal of strengthening issues that were longstanding activities of NCVHS, it had become hard to maintain focus. He suggested eliminating disparities was an area of analysis that offered a way of refocusing on some of these issues and coordinating activities.

Dr. Starfield asked what happened to a focus like eliminating disparities when the Administration changed. Dr. Fitzmaurice observed that eliminating disparities was not in any statute, but was an initiative taken by the leadership. Healthy People had survived a number of transitions and almost every one of the programs within HHS had adopted this concept. It was assumed that eliminating disparities would continue to be a framework. Similarly, the six major goals for HHS in the strategic plan submitted to OMB and the Congress presumably would not change since they were fairly generic in programs the Department was required to carry out. They might “wither on the vine,” but Dr. Lumpkin said it would not be politically feasible for any Administration to say eliminating disparities was not important. The focus may change, but not quickly. It was reasonable to look at eliminating disparities as an issue to address.

Ms. Coltin suggested enumerating the health strategies laid out in the GPRA document and others occupying the government in partnership with the private sector. She asked that the group think about how each related to the roles of the Population Subcommittee or other subcommittees.

Ms. Greenberg noted Healthy People 2010 was more than a Department activity; it had national, state, and local components and private sector involvement. Priorities and funding could change, but something broader with private sector interest and involvement (e.g., reducing medical errors) was likely to continue in some form.

Ms. Coltin remarked that the Balanced Budget Act required HCFA to provide quality measurement information to Medicare consumers. The recommendation in the President's Advisory Commission report was broader, and was reiterated in the National Quality Forum’s (NQF) work. Data issues around the initiative relate to what can and cannot be measured.

The group discussed how the 2000 census incorporates new ways of capturing multi-ethnicity and the obligation to do so by 2002. The Population Subcommittee is monitoring this issue. Dr. Iezzoni reported the Subcommittee had had a number of presentations from the Bureau of the Census. Ways to capture meaningful information were being modeled. Mr. Scanlon commented that OMB and the Federal Interagency Work Group were looking at bridging and analytic techniques to retain ability to do trend analysis while adopting the new standard. He noted that there were disparities that needed to be measured and monitored, and suggested the Subcommittee would want to stay involved with the need for this kind of information.

Dr. Iezzoni concurred, noting the Subcommittee was focused on a baseline of monitoring core issues. Census periodically advised them about OMB Directive 15 and the racial and ethnicity categorizations. Whoever chaired this committee, she remarked, would have to work with staff to come up with hearings, meetings, and agendas and identify who they wanted to advise them. She noted the staff spent a lot of time on this, and needed direction. She emphasized the importance of deciding on a focus and game plan; neither staff nor members had time to waste. She emphasized that she would like to see the Subcommittee focus on disparities in health: many of these people did not have advocates or a private sector interested in them.

Dr. Iezzoni remarked that she came away from sessions of the disability forum at the American Public Health Association meetings convinced that the first thing to do was to define what is meant by “populations in which there are disparities.” People immediately think racial and ethnic, but there are many disparities. In order to cast more broadly, one had to be explicit. She urged the Population Subcommittee to continue focusing on people--Healthy People did this, but not from the data point of view. NQF was issuing a pronouncement about the data issues for the information infrastructure on quality measurement for medication errors. Dr. Iezzoni saw no one addressing information issues around disparities

Dr. Lumpkin followed up on that, noting the group had worked through the issue of other advisory committees looking at matters related to information and saw this Subcommittee as the high-level entity that would get to more detailed recommendations. In many ways, bodies like the Board of Scientific Advisors for NCHS would act as advisory panels. “Our job will be to pull all that together into an overall vision.”

The piece he struggled with, he said, was quality--and how to deal with an organization like NQF that calls for a role in making recommendations on an electronic medical record. Dr. Lumpkin said he had begun to see a role that was not so much developing standards as anointing those that develop, and he observed some standards might develop out of quality information and NQF. Until something else came along, other areas would be uniquely the Subcommittee’s. That, he observed, is where health disparities “fall in.” In the absence of anybody else to do a lot of the technical work, the Subcommittee had to get more involved in technical details of health disparities pieces than in other areas where content expert groups develop standards the group could review and anoint.

Dr. Iezzoni recommended building on the committee’s prior work on disparities (e.g., Dr. Risa Lavizzo-Mourey’s substantial report on poverty and the health care consequences). She suggested inviting Dr. Lavizzo-Mourey to discuss what she would have liked to see done with her work and how she thought the world has changed. A real value of the 50-year history, Ms. Frawley suggested, was realizing some issues the Committee struggled with today, it wrestled years ago.

Dr. Starfield asked for clarification on the data issues: the Subcommittee was not in the business of reducing disparities--what did it see itself doing in terms of the data? Mr. Scanlon noted that Dr. Lurie would background both the eliminating disparities issue and data needs. He observed that, invariably, the issue was how to get health status information on various groups. For racial and ethnicity, it was the groups in the OMB standard. For the Healthy People 2010 template, it was also low-income populations, persons with disabilities, as well as trans-gender issues. Information about major groups was available from surveys, vital statistics and administrative data. In question were subgroups: e.g., Hispanic, Asian. Vital statistics was appropriate for some, but over-sampling would not work with others. Ultimately, he said the question (particularly for small subgroups) became how to get the data and the strategies. Resources were another issue. Initiatives included trying to ensure access, services, or financing for various subgroups and advising on things like the SCHIP. Another interest was defining the public health safety net and the data needed to monitor it.

Looking at the issue of disparities and focusing on data and information issues, Dr. Lumpkin proposed that the group determine a set of priorities based upon Healthy People or whatever process took hold in the Department. Many things the committee dealt with related to chronic disease, he observed, and did not fit the traditional public health model. A major concern of CDC was obesity: to what extent was the system able to capture measurements of obesity? The design of urban communities creates barriers to exercise, Dr. Lumpkin noted. “You just can't walk to the store from a housing development.” The group could look at different ways to collect and model the kind of diseases the nation needs to impact. He suggested looking into these issues and generating debate.

Another issue Dr. Lumpkin pointed out was how to collect risk factors. Should the group look at the behavioral risk factor survey and how it is being implemented? Was it enough, in the 21st century, for data to be collected only on a state level?

Dr. Lumpkin encouraged the group to add the issue of how to best survey schools to the agenda. In Illinois, some over-surveyed school districts no longer participated. How could information be gathered that indicated whether programs for young people were effective?

Dr. Lumpkin discussed bringing issues that have not been dealt with back to the table, highlighting the problem and hoping people go out there, identify good work, and come back with results of their action.

Dr. Starfield proposed consideration of a model being developed by a small subgroup consisting of Dan Friedman, Ed Hunter, Marjorie Greenberg and herself. This is a model of the determinants of health with outcomes that include distribution of health among the population, i.e., disparities. The Subcommittee could focus on a category of determinants and data that measures the average level as well as the distribution. Next year, another set of determinants could be incorporated into the Subcommittee’s work plan.

Dr. Lumpkin noted that discussions like this led to a more integrative approach and were needed. Do “you cut the pie” in a horizontal fashion, looking at one individual determinant, or cut vertically, looking across a particular area of concern at all the determinants and ways to capture its data. He noted previous discussions about racial and ethnic data in relationship to the 837 document and said that, in looking at the capture of administrative data, the group had to determine: (1) the extent cost of data collection could be balanced, (2) if it was reliable enough for the purpose intended, and then (3) come up with a recommendation that would impact some of the standard development and maintenance organizations.

Dr. Iezzoni reflected that refocusing the Committee on population health would be a challenge. People working on HIPAA standards and privacy had so many issues “on their plate.” The question was whether to refocus the NCVHS on population health or make sure the Subcommittee maintained focus, so the Committee heard what they were doing. Once HIPAA arrived, she said the Committee had been content to have the Subcommittee off “doing its thing.” The focus was on HIPAA, as it needed to be; the legal mandate is that the committee advises on certain specific things. Dr. Iezzoni observed that, with the Committee split between those interested in the standards or the population, refocusing would be a challenge and it was not obvious how it would work.

Reflecting on the Subcommittee membership, Ms. Frawley expressed concern that some institutional history would be leaving the committee. “Two or three people may still be interested in the issues.” Dr. Starfield responded that she believed disparities was a Committee issue that would help both Subcommittees focus on data elements they need and on standardization.

Dr. Lumpkin saw establishing priorities as the Population Subcommittee’s first goal. Priorities would engender work groups, and the intent would be to get more standards people on them. It would be hard for Dr. Cohn and Mr. Blair, chairing the standards areas, to get involved in other issues. But others could be encouraged or cajoled to participate on a group (the NHII Work Group had realized participation), whereas they might hesitate to get involved in the Committee’s full work.

Another piece, Dr. Lumpkin noted, was how much the Committee’ time and hearings were utilized. If disparities became a Committee issue, a lot of work needed to be done within those hearings. That would enable all members to gain input and integrate.

A third point, he said, was how different subcommittees and work groups were charged. With disparities as this year’s issue, each would be asked to address it and report back to the Committee on how they saw themselves addressing this issue. These were all “pieces to try.” The group should see which work, then revisit and discuss how to best address these issues and goals

Dr. Iezzoni asked for clarification about quorum requirements for work groups and hearings. Ms. Greenberg and Mr. Scanlon commented that you do not have to stop a fact-finding hearing for lack of a quorum, but work groups operationally try to have a quorum. Dr. Iezzoni emphasized the importance of structuring work groups, defining hearings, and identifying participants in ways that every member could get enthused, even though they come from different perspectives, so they had a commitment and willingness to show up. Dr. Lumpkin pointed out the need to make sure, when creating a work group, that a strong core of individuals would actually be there to do the work. Ms. Greenberg observed the important thing is that the information is brought in and that something is done with it. Dr. Fitzmaurice commented on the practice of canvassing members to ensure they know about a hearing and expectations and following up, when necessary, with a letter of disappointment.

Reflecting on Dr. Lumpkin’s observation, Mr. Scanlon noted that in many ways, the work of the Population Subcommittee was hardest of all. It wasn't specific or driven by legislative agenda like HIPAA or Privacy. So much discretion about what to pursue and members with such specific interests were a challenge. Yet it was one of the few subcommittees where all the perspectives came together. It was difficult; one hit the rule of thirds trying to get members interested. But population focus was fruitful, interesting and future-oriented.

Ms. Greenberg observed that in earlier discussions about whether there should be a separate advisory committee on standards, the case made prior to HIPAA was that standards should be informed by “the reason we do all of this”--to improve the health of the population and, within that context, health care and disparities. Ms. Greenberg said she sometimes reflects back on that discussion and wonders; people who gravitate towards the Subcommittee on Standards have different professional responsibilities and interests than those who are more interested in populations. Noting that refocusing the Committee on population issues would not happen by osmosis, Ms. Greenberg said it took a plan and structure. With leadership from the Executive Subcommittee, a vision that can be articulated might provide a context in which some of the work the Committee was mandated to do could be seen. She noted it would be constructive if this underlying context in which work was done were articulated for the new members.

Privacy cut across everything and was a different slice, Ms. Greenberg observed. But the Standards and Security Subcommittee had to be concerned about population health issues as well. She noted CDC’s involvement with HIPAA. In public health, in standards, and in health industry data there needed to be, at least on this Subcommittee, recognition of reasons for standards. The HIPAA law addresses, not only the efficiency, but also the effectiveness of the health care system. Equity issues (whether or not disparities are being addressed) impact effectiveness. Dr. Lumpkin stated a need to be clear about what the National Committee was and what it aimed to accomplish. He noted that the dichotomy between health care, public health, and population-based systems was an issue that had been “struggled with” for hundred of years. He asserted that the Committee, striving to envision major transformation in health care through automation, could bring these issues to the table. Winning over people who began their work in the Committee seeing only health care or HIPAA issues would not be easy, but it was worth doing. The Committee could be successful, he advised, so long as they returned to the mission and vision of the use of health information to improve the health of the public. Some members have their single area of focus; the goal was to integrate them into the Committee’s overall mission.

Ms. Frawley noted that the panel or session focusing on population-based issues, which the Committee previously discussed having at each full meeting could ensure that members were well-versed on some issues. She also observed (having sat on the Executive Committee, two Subcommittees, and a work group) that she was beginning to realize that a lot of work for the two Subcommittees was changing focus. The HIPAA regulation had not come forward from the Department as quickly as expected, but most recommendations had been made with the exception of the unique health identifier and claims attachment--the digital signature piece was an odd fallout from the security final rule, and there was still some work under PMRI. Everything else was covered. She said this raised the question of whether the Committee should restructure.

Ms. Greenberg noted it always seemed appropriate that a population focus should be part of the CPR or PMRI work folding back into the Subcommittee. Mr. Blair commented that it was clear that the Subcommittee needed a lot of input from diverse sources. He reflected when clinical and demographic information was not captured initially, patient record information for chronic care could be lost for public health care or clinical research. Ms. Greenberg agreed that the PMRI information was “for more than just paying bills.” Mr. Blair observed that some code systems had been driven, until now, by priorities within health care delivery systems: e.g., reimbursement and general statistical information. He predicted that the priorities driving selection of terminologies and code sets would shift and probably become more complex.

Dr. Lumpkin reflected that, in looking at a population approach, the Committee needed to consider integration of two sets of data: one generated by patient encounter, the other originating elsewhere. Much of the data generated by patient encounter was significant to population health, but not necessarily clinically significant and so had not been captured. Dr. Lumpkin pointed out that one automated a re-engineered system; one did not automate the old one and then lament the fact that it worked just the way it did before. He said this was the kind of input needed to go forward. He said he heard everyone was still comfortable aligning the focus rather than refocusing the overall mission of the Committee, which was improving health information to improve health. He proposed using the concept of eliminating disparities as a tool to get the Committee functioning--asking all the subcommittees and work groups to consider the extent they could address the issue of getting better information to eliminate disparities. Looking at Healthy People, the Population Subcommittee could address issues of priority in relationship to broad population health and come back with recommendations or priorities, have them adopted, and create mechanisms to address them, based on that priority.

Noting the reservations minority groups have about collection of population-related data, Dr. Lumpkin proposed asking the Privacy Subcommittee to look at issues related to collecting data for eliminating disparities.

Mr. Blair said he was struck by the broader definition of health in a document on the health of Angelenos and its account of disparities between religious, ethnic, and economic groups that touched on environmental issues and the concept of well-being. The view was broad and complex. He said it might enable addressing health issues that remained elusive while the focus was only on acute care or chronic diseases. He encouraged everyone to define disparities broadly, and at least agree among the Committee on how broad scopes are in this area.

Mr. Blair suggested the next stage with patient medical record information is clinically specific or appropriate coding systems to indicate environmental stressors in both admission discharge transfers and within ambulatory patient record systems. He pointed out the need to acknowledge that coding systems that help describe well-being and depression and mental health might still have to be identified. Dr. Lumpkin concurred, noting that if you live in Alexander County, Illinois, regardless of your socioeconomic status; the nearest hospital that delivers babies is still 100 miles away. He said he heard a need to charge the Population Subcommittee with helping develop a working definition of disparities that the Committee could use to charge the other work groups to begin to address it.

Ms. Frawley noted they would be doing work on genetic discrimination in the Privacy Subcommittee working session during the full meeting. She recalled NIH had a series of hearings on the Human Genome Project and a number of women testified they had agreed to be tested for the BRAC-1 and BRAC-2 gene. Many had said, knowing what they did now, they would never go through that because of their concern about where the results are recorded, who can access them, whether that information would be used to discriminate against them for insurance or employment, and the impact of deciding whether it should be communicated to daughters who could be at risk. Focusing on disparity, Ms. Frawley concluded that one had to realize the project was over, but “that information floats out there”--How did one deal with it?

Ms. Greenberg commented that, in line with the ICIDH and WHO meetings she recently had attended, she saw the whole idea of defining health as much more than just diagnoses. She said the extent health-related areas of participation and involvement in societal roles impact on peoples' mental health and ability to rise in their socioeconomic status was the next horizon. And she called the Subcommittee on Populations’ efforts to look into collecting functional status important and solid.

Dr. Lumpkin recalled a quotation in the 50-year history about it taking nine years for a project to be adopted by the Department, and all that time the role of the Committee was “to be out there.” Fighting for issues, he said, was inherent in accomplishing their task. The downside was not getting gratification: HIPAA, which so far had taken only four years, was an aberration.

Noting the group had already agreed on a need for good definitions, particularly of disparities, Dr. Fitzmaurice suggested the Subcommittee on Population focus on barriers to population and disparity research. He predicted that once the Privacy Rule is out, things would get tougher for population research.

Transition to a New Administration

The group talked at length about the transition. They noted, whatever happens, the administration would “get off the ground slowly;” normally, a transition team would already be on the sixth floor--and, in fact, visiting the Subcommittee that day. They noted that the full Committee was known on both sides of the aisle for not being partisan and doing substantive work; the work and, probably, the direction the Committee was going would be valued. But there would be a new Secretary, Assistant Secretaries, and probably all new agency and staff office heads; there always was a need for orientation with new leadership. Mr. Scanlon said meetings would be scheduled with agency heads that deal with the Committee to offer its services on issues and discuss the Committee’s concerns. The new leadership could come to the Committee with issues or initiatives where they sought to direct attention.

Dr. Deering asked if there was a provision during this vacuum for the Committee to advise Congress on health policy. Dr. Lumpkin noted there were precedents, but said he was not sure it was a wise model to follow at this point. Mr. Scanlon pointed out that the Committee already was an advisory committee to a federal executive agency, had appointees from the House and the Senate side, and reported to Congress.

Mr. Blair noted one professional association had questioned whether the NCVHS had the legal authority to recommend PMRI standards to the Secretary or if she could adopt or mandate them. He asked if the Committee should request a re-confirmation of their support for going forward with PMRI standards. Dr. Cohn doubted it made sense to ask for what they already had: the Committee had permission to make recommendations, which would be ignored or accepted as the Secretary chooses. Dr. Lumpkin pointed out a provision in HIPAA that allowed the Secretary to adopt standards beyond what was listed under HIPAA. The Secretary had a broad charge for standards. Living in a farm state, he reflected, you pick up a bit about farming: in soybeans, every now and then, a stalk of corn sticks out and they call it volunteer corn. No one asked it to be there, “it just volunteered.” He said, in many ways, the Subcommittee functioned as volunteer corn, whether asked to or not. Until HIPAA, most of the Committee’s recommendations were unsolicited by the Department. By promoting standards, the Committee suggested a direction industry should go. The market had so little direction, he said, just tossing out a seed crystal might be enough to precipitate direction around a standard to enable development of electronic medical information transfer. That is what the Committee had to accomplish, whether or not a final rule was proposed.

Asked if the Data Council would continue through the transition, Mr. Scanlon considered that it was seen as a Departmental mechanism for internal focus and would probably find support. “You would have to invent it, if you didn't have it.”

Planning for February 21-22, 2001 Meeting

The group discussed reports the Committee was likely to submit in the first quarter. Ms. Greenberg mentioned the symposium report and history and suggested they provided an opportunity to note in a cover letter the fruitful relationship the Committee had with the Data Council. The report to Congress on HIPAA implementation would probably be submitted in April. Hopefully, there would be the ICIDH report. Dr. Lumpkin encouraged the group to continue. He observed that the Committee made reports because it advised the Secretary, but they also went out to the public and engendered discussion.

An issue raised previously was whether the Subcommittee on Privacy and Confidentiality should continue or the mission of raising privacy issues should be extended to all the subcommittees and workgroups. Dr. Lumpkin observed that when you segregate a function to one Subcommittee, sometimes it became an afterthought. Dispersing privacy experts to all the Subcommittees might more expeditiously accomplish goals. He said he would ask for the Subcommittee's advice. Dr. Cohn was against the concept. Mr. Scanlon pointed out that, having gained the attention of the Congress and the nation, the privacy area was still in a formative stage. The Subcommittee might have considerable work or be “stretched out” waiting for the Congress and regulations. Ms. Greenberg noted that, when the Subcommittee last met, people felt there were enough issues to fruitfully occupy them.

The group discussed action items for February. The ICIDH report was put on the agenda for discussion. Dr. Iezzoni noted that, in the past, the full Committee was given time to look at it before voting; if the Medicaid Managed Care Report was any precedent, this could go on many sessions. Dr. Starfield noted a title should be decided the next day. Dr. Cohn doubted the digital signature piece would be “wrapped up,” but there would be hearings by then. A progress report was noted. Mr. Scanlon said there probably could be at least a rough draft of the HIPAA report to Congress from the Subcommittee on Standards and Security. Mr. Scanlon reported the privacy regulation could be out in a few weeks. Security might be out shortly thereafter. He said the National Institute of Standards and Technology had been asked to help with standards relating to Digital signatures. Dr. Cohn noted that the problem with the digital signature part of the security standard was that it was too high-level to be useful. But at the last hearing, he said the Subcommittee heard industry needed it. They were looking to advise the Secretary on something of substance and specificity. Mr. Blair reported that in the breakout session a framework would begin to be crafted to build consensus on the criteria for selecting PMRI standards. Ms. Greenberg noted the history would be an action item.

Dr. Denise Koo, CDC, would provide a briefing on the National Electronic Disease Surveillance System (NEDSS) and public health conceptual data model. Ms. Greenberg would follow up. She reported results of the ICD-10-CM pilot testing would not be available until June. A briefing on the classification was set for February.

Dr. Iezzoni noted that the Subcommittee was on record as wanting a uniform procedure classification system, and concerned about proprietary systems. She asked if members still wanted to go on record with the position held staunchly in the past. Dr. Lumpkin said they probably would stick with the presentation on ICD-10-CM at the February meeting. Dr. Cohn suggested the dental terminology, CDT, should be at the table for the discussions when procedural classification is addressed.

Ms. Coltin remarked on the direction HCPCS was taking. Level two HCPCS and the evolution of CPT would have to handle a lot of procedures, if everyone had to stop using local codes. Many local codes originated around services like home care, where CPT did not adequately address services delivered in that setting. HCPCS did not necessarily do so, either, and there were recommendations in the October letter to the Secretary about the ambiguity around the process for requesting HCPCS codes. Faced with a 2002 deadline to stop using home care codes, the questions were (1) Would CPT have codes ready? (2) Was HCPCS developing more codes in these areas? (3) What was the process?

Dr. Cohn concurred. If Congress ever passed that particular Medicaid or omnibus spending bill, he noted there was a provision that would provide a three-year window for local codes. He told of hearing a presentation from HCFA about how they were taking the 10,000 to 20,000 Medicaid local codes and trying to move them into level two HCPCS codes. He suggested it might be an interesting presentation.

Mr. Blair said the Subcommittee on Standards and Security heard a lot of testimony in July on level three codes and difficulties payors and providers were having migrating to level-two codes. The Subcommittee received a number of recommendations and struggled to deal with it. A letter had been sent to the Secretary.

Dr. Lumpkin said the issue he heard being discussed was how did they want to manage the issue of procedure codes. Should they sit awhile and revisit, hold hearings as a full Committee, or ask the Subcommittee to review and come to the full Committee with recommendations?

Mr. Blair remarked that, as the Subcommittee proceeded with the selection of PMRI standards, they were considering covering code sets for procedures they recommended.

Dr. Cohn said he sensed a cleavage between the issue of clinical terminologies and the overall issues the group discussed around procedure codes. He suggested they might deserve their own forum. Clearly, code sets were likely to be a major issue. What was handled in the Subcommittee versus the full Committee was an open issue. He looked to the Subcommittee to help figure out priorities. Ms. Coltin encouraged the Subcommittee to identify gaps in the current procedure coding systems and existing or potential processes for filling those gaps. Dr. Cohn reported that the Subcommittee on Standards and Security was already taking on some issues with codesets in February. Some serious concerns had been raised about National Drug Codes (NDC) that needed to be on the agenda. He said the Subcommittee was taking a marketplace view, listening to a broad variety of people about issues and what it needed to do to mitigate them. Dr. Lumpkin asked the Subcommittee to look at the issue of the code sets and bring back a work plan.

Ms. Frawley commented that perhaps there should be a briefing on ICD-10 CM in February, staying away from the procedure classification issue as already discussed. She noted that the committee's recommendation to the Secretary on coding and classification systems came out of two days of hearings. She observed there was work to be done on the whole issue of local codes, and said she thought it would migrate back to the procedure issue, but that there might be a back door approach. The Committee was talking about ICD-10 CM, and most members had not seen it.

Ms. Greenberg said NCHS had brought Dr. Newacheck in as a consultant on an evaluation project the group got approved several years ago to develop sentinel indicators from the National Health Interview Survey (NHIS). A key set of indicators (e.g., health insurance coverage) were to be released quarterly, using accelerated data processing methods. Data could come out a few months after collection, rather than the 18-24 months it took for release of the NHIS. Ms. Greenberg said Dr. Newacheck was impressed with the NCHS staff ‘s work and suggested it would be a useful presentation. He suggested committee members discuss which indicators should be given priority.

Dr. Lumpkin said he saw three briefings for the February meeting. NEDSS and the public health conceptual data model. Then ICD-10-CM. And the sentinel indicators evaluation.

Dr. Lumpkin noted the Workgroups on National Health Information Infrastructure 21st Century Health Statistics would have their last joint hearing in January, and would come back and discuss their findings in June. Both the Advocacy Group on Privacy and the Pew Commission report on the environmental determinants of health were scheduled for the January 11 Joint Workgroup hearing.

Mr. Scanlon reported on a potential issue for population-based data. OMB planned to issue for comment guidelines on implementing the new standards for collecting racial and ethnic data discussed earlier. Comments would be made in February. The guidelines will address how to analyze and interpret the data and deal with bridging trend and new data.

Noting the expectation that privacy regulations would be out by February, Dr. Cohn asked if there would be value in reserving space for people from the industry who might want to identify concerns. Ms. Frawley said she saw that (and bringing it forward, probably at the June meeting, with a follow up to the Secretary) as a Subcommittee activity.

Dr. Lumpkin reiterated the issue raised earlier about school-based surveys. Some states had initiated efforts to combine school-based surveys (e.g., youth behavioral risk factors, youth smoking, drug use, and juvenile justice-based surveys). The group might want to hear what they are doing. That could be on the June agenda, or there was potential for consolidation with the Data Council.

Ms. Greenberg mentioned the HHS strategic plan for February. Dr. Lumpkin said a conference call needed to be scheduled in January, after they saw what the new Administration thought about the strategic plan.

Members will be polled to schedule a January conference call to review the February agenda and a date for the spring meeting, after checking Dr. Lumpkin’s schedule

Members agreed to include the following items in the agenda for the February Meeting:

The following items were added to the agenda for the January 11 Joint Workgroup Hearing:.

Members identified the following items for the agenda of the June Meeting:

Dr. Lumpkin then adjourned the meeting.


I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.

/s/ John R. Lumpkin, M.D. 3/28/01

Chair
Executive Subcommittee