The NCVHS Executive Subcommittee met on Wednesday, April 21, 1999 in the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:
Absent:
The Subcommittee conducted the following business:
Several cross-cutting issues and priorities arose. Dr. Deering said that NCVHS work on data aspects of health disparities would be helpful to the Healthy People 2010 process, among others.
The group talked at some length about using the national health information infrastructure as an integrative conceptual framework for the Committee's current and future work. Dr. Lumpkin led discussion of ways to bring more coherence and overlap to the Committee's activities and to set priorities that could govern the use of time and resources.
The group discussed the need for care in maximizing the impact of Committee recommendations as the Administration enters a transition period.
They also considered how to monitor and be ready to contribute to forthcoming decisions on privacy regulations, in view of the Committee's meeting schedule. It was suggested that the Privacy Subcommittee address this question at its June meeting, and also that it hold a conference call prior to its May meeting. The Subcommittee also was asked to recommend a generic process for handling time-sensitive business between meetings, for consideration at the June NCVHS meeting.
The Subcommittee reviewed proposed revisions to both the 1996-1998 Report and the 1998 HIPAA Report to Congress, together with comments from Mr. Gellman. The main themes of the discussion are outlined below; the decisions are outlined under Actions.
After Dr. Lumpkin asked everyone to introduce themselves, Ms. Greenberg noted new management arrangements for NCVHS, with a new contractor and Kathie Jones as the new team leader of the NCVHS team at NCHS.
Dr. Iezzoni reported that the Subcommittee is wrapping up major projects on Medicaid managed care and the islands and territories. Draft reports for both are under review. The Subcommittee will finalize its recommendations to the Secretary at its May meeting, for presentation to the full Committee at its June meeting.
Its next initiative, set to begin in the summer, concerns measuring functional status and the current placeholder in the core data sets. A contractor is being engaged and experts lined up to weigh in on the topic.
Ms. Greenberg reported on the Project/Work Group on Health Statistics for the 21st Century, chaired by Dr. Friedman. There has been a series of conference calls, and progress is being made on five commissioned papers. The CNStat workshop is now scheduled for November 4-5, 1999, following the NCVHS meeting, at the National Academy of Sciences. Active work is underway on developing a public process, modeled on a process developed by NIOSH and also on one used in Canada. Mr. Scanlon reported that at the National Academy, Andy White will be taking an active role in this project.
Dr. Deering commented that the process underway on the leading health indicators for Healthy People 2010, involving focus groups, may have some relevance to the public process on health statistics. She also asked if the process is seeking public input on health information needs, as Canada did, or on statistical needs.
Dr. Starfield noted the overlap between the Work Groups on 21st century statistics and on the national health information infrastructure.
Dr. Lumpkin observed that even if the questions are framed in terms of health statistics, people will want to talk about health information; therefore, a more integrated hearing process may be in order. The group seemed to favor the idea of integrated regional hearings.
Returning to her Subcommittee report, Dr. Iezzoni said the Subcommittee had approved the charge and work plan for the Work Group on Quality. Ms. Coltin said the Work Group is aligning its objectives and work plan with those of the Populations Subcommittee. For instance, on the continuum of care issue, it will focus on which data elements are most used to monitor quality of care and what others are most needed to support quality measurement and monitoring. The Work Group also will look at what elements are most used and needed for improving care across the continuum, especially for a provider's internal purposes as distinct from external reporting requirements. The Work Group will include mental health services in its review of chronic conditions, bringing in people to discuss the issues they have faced in measuring care. The Work Group also will look at the data systems and issues of community- based delivery systems that have to integrate with providers in other settings.
Dr. Cohn commented that the Work Groups on Quality and on the Computer-Based Patient Record have a shared interest in data quality that might suggest a joint effort later in the year. Ms. Coltin said this is in the work plan.
Dr. Iezzoni described a new organization, the Quality Forum, partially funded by Robert Wood Johnson Foundation and staffed at the outset by United Hospital Fund. Dr. Iezzoni has been named to the 17-member Board of Directors, chaired by Gail Warden. The Framework Committee, composed of 6-8 leaders in the field of quality measurement, will be discussing where the country is headed conceptually, intellectually and operationally with quality measurement, and will make proposals to the Board of Directors.
Shifting the topic, Dr. Lumpkin asked about looking at the data issues related to health disparity. Mr. Scanlon said the Data Council's race/ethnicity work group is looking at the Surgeon General's disparities initiative and will present its recommendations on race and ethnicity data in June. Dr. Starfield commented that issues around social class and income disparity have not been addressed. Dr. Deering commented on the work on Healthy People 2010, which has the elimination of health disparities as one of its overarching goals. The planners have not come to closure on how to track measures within the goals. A major issue is the lack of real measures related to disparity. Thus, any work by NCVHS on this issue would be of great help. Dr. Starfield called attention to the Committee's letter on the Healthy People objectives, focusing primarily on disparity.
Dr. Iezzoni commented on the need for leadership within Subcommittees for any issue to be taken on, including this one. The group discussed future Committee appointments in that regard.
Dr. Cohn commented that the Subcommittee is in transition and "pulled absolutely as far as it can be." One of its activities for the future will be to hold hearings after the next NPRMs are published. Claims attachments and the payor ID will be key subject areas. The Subcommittee is doing a good job of tracking implementation so far, but will need to focus in the near future on how to deal with metrics and baseline, in order to track implementation of NPRMs. Another area of concern is procedure coding.
He predicted that the Committee's core data elements recommendations will grow in importance as administrative simplification goes forward and mechanisms are needed for maintaining and updating data content. Thus the Committee should keep a close eye on developments in this area, because as national standards are put in place there may be a way to advance recommendations about content. It may soon be time to hear from the data content committees and SDOs about how they intend to work together, and to pose the question of how the core data elements, on which the Committee has done "some very good work," relate to these groups' processes in moving toward national standard elements.
Mr. Streimer noted that HCFA has engaged the NUBC, NUCC, the ADA, X12 and others in a discussion of establishing a uniform process for maintaining data content, resulting in a proposal for something like a "national uniform data council."
Dr. Lumpkin asked how all of the above fits into a national health information infrastructure agenda and rubric as a way of integrating the work of the Committee. He recommended that the Standards Subcommittee have a representative on the NHII Subcommittee Work Group.
Dr. Cohn reported that the CPR Work Group has updated its work plan and continues a series of hearings, forthcoming in May, June, October and December. He reiterated the interest in a joint effort with the Work Group on Quality. Other foci are business issues related to medical record information and issues of legislation.
He described his concerns that releasing recommendations in this area in August of an election year runs the risk that they will be quickly forgotten. However, Dr. Braithwaite has assured him that the recommendations are primarily intended to advise HHS operations, rather than to stimulate Congressional legislation.
Dr. Lumpkin responded that such concerns about timing and impact are a challenge for the entire Committee related to all its priorities, including the work on disparities. It will be important to consider the market and "packaging" as well as timing, to have maximum impact. A related issue is how to address the transition to a new Administration. Ms. Greenberg added that the Committee will probably have to make some of its recommendations twice, in the summer of 2000 and the winter of 2001. Mr. Scanlon suggested "greeting the new leadership with an early set of recommendations," especially since the Committee is a bridge to industry and the research and public health communities.
Dr. Cohn characterized the issue as a matter of awareness of the political milieu in order to be effective. Resuming his Work Group report, he said the group has discussed a possible name change because of concerns that the current one is misleading (suggesting advocacy for a computer-based record for everyone). A proposed new name is Patient Medical Record Information Standards Work Group. There is not a consensus on the Work Group about changing the name, largely because of concerns about changing a name when people have gotten used to the current one, even if it is less descriptive.
Dr. Lumpkin invited discussion, observing that whatever its name, the group will always have to explain its mission and charge to the media and others.
Dr. Deering commented on the desirability of using names to express the underlying priority, rather than a particular technology or tool. This has been the experience in the field of telehealth, where the trend is toward technological neutrality and just assuming the existence of a technology rather than focusing on it. Ms. Greenberg observed, on the other hand, that the charge to the National Committee in this area focuses on the electronic exchange of basic medical information.
Dr. Lumpkin concluded from the discussion that there is no "overwhelming desire to change the name." The Subcommittee agreed that the Work Group's name would therefore remain unchanged.
On another subject, Dr. Fitzmaurice proposed that the May 17-18 speakers on SNOMED and the NHS Clinical (Read) Classification be asked to talk about what led them to merge and how the maintenance process will be made more opened. On a related subject, Dr. Lumpkin observed that the Committee has traditionally focused on English-speaking standards development and at some point should address the non-English-speaking world to see what is happening there. Ms. Greenberg said she has heard recommendations that the combined terminology activity strongly liaise with the World Health Organization. There are concerns, too, among the WHO Collaborating Centres that the ICD standards and tools are "English- centric."
Dr. Cohn reported that NCVHS is represented on the planning committee for a national terminology conference taking place at Tyson's Corner in late April. Ms. Greenberg said questions have been raised about possible duplication of effort, given the various NCVHS hearings and the other terminology-oriented activities. Dr. Cohn said people working in this domain can benefit from multiple opportunities to talk to each other, through which they can work out how they will collaborate.
Ms. Horlick reported that the Subcommittee will host hearings on May 19-20 on employer access to health care information and the flow of information in pharmacy benefit management (PBM) firms. The Subcommittee will develop recommendations to the Secretary for presentation to the Committee in June. Privacy advocates have been invited to make formal presentations and participate in the discussions. She described some of the groundwork for this hearing and invited suggestions of additional panelists.
Dr. Lumpkin asked what the Subcommittee intends to do with its findings, noting that an important determinant of the threat to privacy is whether the information is person- identifiable. He suggested that after the hearings are over, it might be helpful to address that issue, which relates to privacy questions the Committee will be addressing as it looks at the continuum from the encounter to the person to the population.
Asked about the Subcommittee's anticipated role in advising the Department on privacy regulations, Ms.. Horlick said the plan is to finish the aforementioned letter by June and then be available to the Secretary to advise on privacy regulations. Dr. Iezzoni recommended having a more formal process for monitoring developments, with readiness to weigh in as needed. She asked about the appropriateness of the Committee's speaking directly to Congress about its concerns about Congressional activity or lack thereof in this area.
Mr. Scanlon characterized the Subcommittee's role thus far as doing fact finding in specific areas of importance, such as PBMs. Its findings can feed into a bill or regulations. He noted that between now and August, several different scenarios are possible regarding privacy legislation, including an extension of the deadline for Congress to enact legislation. It was agreed that Mr. Fanning would be asked to report on the status of various bills at the June NCVHS meeting.
The group discussed aspects of the issues on the agenda for the May Privacy/Confidentiality Subcommittee hearing, with Dr. Cohn raising a number of concerns. Mr. Scanlon reiterated that the Subcommittee wants to find out what is currently going on before considering what language might be necessary in a law or regulation.
Ms. Greenberg suggested that the Subcommittee have a conference call prior to the hearing.
Dr. Lumpkin observed that the Committee should discuss in June how to participate in the regulation development and legislation monitoring process between meetings. Ms. Greenberg noted the model of having NCVHS representatives on the implementation teams developing the NPRMs. Mr. Scanlon said the Secretary's privacy recommendations, which drew on the Committee's recommendations, will be the starting point for work on the next phase.
Dr. Lumpkin asked that the Subcommittee be ready to report in June on its plans for process and products.
Ms. Coltin supported a suggestion by Dr. Cohn that the Subcommittee hear from health plans about the policies they have developed around sharing data with employers. In the same spirit of getting varied viewpoints on a subject, Dr. Cohn urged that the Subcommittee try to get consumer and provider views of PBMs as well as the PBM perspective.
Mr. Scanlon reported on new funding for contract work and analytic work for the current fiscal year. Ms. Greenberg expressed appreciation for the additional support. She urged that staff work be supplemented by hiring writers with appropriate expertise for various projects.
Dr. Cohn said the latest CPR hearings generated an interest in developing a report on the business case for comparable patient record information and electronic exchange. Mr. Scanlon explained various ways to engage outside assistance.
Dr. Lumpkin suggested that in view of the constraints inherent in members' time and the Committee's financial and staff resources, the Executive Subcommittee should look at all of the projects envisioned by the Subcommittees and Work Groups and develop a comprehensive timetable consistent with NCVHS priorities and funding. This should happen annually at a predetermined time and over a period of time, culminating by a certain date. The group discussed how to establish a more organized planning process that is attentive to funding cycles and other factors.
Dr. Lumpkin commented that the Committee's planning cycle should be coordinated with the government's fiscal year. He proposed that at the Executive Subcommittee's summer meeting, it put together the year's matrix of activities. This means the Work Groups and Subcommittees need to have their plans finalized by the June meeting. Dr. Iezzoni noted the uncertainties relating to membership changes. The group agreed that the Committee should move away from "first come, first served" in the allocation of times for hearings and meetings. Similarly, Dr. Iezzoni suggested developing policy on the use of resources to cover expenses for hearing presenters who otherwise could not participate, to assure diversity among presenters.
Ms. Greenberg suggested that the Executive Subcommittee consider whether to have any NCVHS hearings outside of Washington, D.C. Dr. Edinger suggested looking into greater use of video conferencing, using HHS regional office capabilities among others. The group discussed various applications of this idea.
Ms. Greenberg referred the group to the January 7 Executive Subcommittee decision to have a half-day symposium in conjunction with the June 2000 meeting, followed by a reception. This plan was "blessed" by the full Committee and referred back to the Subcommittee for handling. Kerr White was mentioned as a possible speaker. (Ms. Greenberg noted the possibility of videotaping him making comments, to ensure that he is part of the event if he is unable to attend in person.) Dr. Detmer plans to participate, and other former members and Chairs should be included. Someone needs to find out if the reception can be held at the National Academy of Sciences (NAS). A date has not yet been set. The budget includes funding for work on the event. The idea of having the symposium on the Hill was discussed, but the National Academy was preferred.
The Committee has considered rolling out the visions for the NHII and 21st century health statistics at this time, representing a vision for the future built on the Committee's 50- year history. Dr. Deering said the NHII Work Group hopes to have its expanded NHII paper ready by early 2000. Some international people are interested in participating in the 50th anniversary event. Mr. Scanlon said he would check on possible dates, and staff will poll Committee members, with the idea of finalizing a date by the June 1999 meeting. The Executive Subcommittee will resume the planning process at its summer meeting.
Referring to earlier discussions on the NHII, Dr. Lumpkin said that the new document under development will be a call to action. The goal is to get buy-in to a large vision of an integrated health delivery model whose components include details about data concept issues, health statistics, health records, and so on. The NHII Work Group is starting to flesh that out and will hire a contractor to write the document.
Dr. Cohn urged that the document be tightened and the key messages clarified so the concepts can be communicated clearly and succinctly, as in Dr. Detmer’s Power Point presentation to the Data Council. The group discussed the way in which federal government's articulation of the big picture and a desired outcome can stimulate a creative process in which industry, SDOs and others can participate.
Dr. Lumpkin noted the overlap between the domains of the Work Groups on the NHII and on 21st Century Health Statistics. The current thinking is that the two should continue to work separately, with the possibility of a future merger. Members agreed that "the vision" encompasses different facets, including the patient record, population record, and encounters. Dr. Lumpkin noted that these are different views or functions of the same data.
Mr. Scanlon mentioned the NAS/White House work on the second generation Internet for health applications. Dr. Lumpkin noted the need to distinguish technology from information components, moving toward the goal of making the approach technology-neutral (per Dr. Deering's earlier comments).
Dr. Lumpkin raised the issue of the lack of overlap and cross-fertilization in the Committee between privacy/confidentiality and standards, on the one hand, and population- based issues, on the other. Dr. Iezzoni noted that some members have tried to participate in several Subcommittees but found the time pressures impossible. The Subcommittee on Populations will be addressing privacy concerns in its work on functional status measurements. Members agreed that all the issues come together in the context of the NHII, and also that the Committee should find other integrating mechanisms. Joint subcommittee meetings were mentioned as one approach, but Dr. Iezzoni noted that subsequent follow-through is difficult.
Dr. Lumpkin asked whether the Committee needs to spend more time together as a Committee to address overlapping issues, reversing the current trend toward spending much time in break-outs. Ms. Coltin responded that proposals should be worked out or framed in smaller NCVHS groups, and then brought to the full Committee for discussion and debate. It is more difficult to move from discussion to action in the large group.
Ms. Coltin, Dr. Iezzoni and Ms. Greenberg referred to the struggle during Ms. Jones' tenure to resist a move in Congress to create separate advisory committees on privacy/confidentiality, standards, and so on. At that time, Ms. Greenberg and others argued for the merits of having a single Committee in which the inherent overlaps and tensions could be balanced and worked through. Those benefits still exist; the problem now is just the volume of work the Committee is trying to handle. Dr. Starfield observed that when the technical work of administrative simplification is completed, the Committee will naturally start to bring the components of its work together through its visioning process.
Dr. Iezzoni urged that in pulling the Committee together, attention be paid to selecting topics in which all members can engage productively. Ms. Coltin pointed out that tightening its agenda could give the Committee more overlap. Dr. Cohn mentioned data content as a subject in which all members would have a stake. Dr. Lumpkin suggested encouraging work group and subcommittee chairs to think about what issues should come to the full Committee before it is time to vote on a proposal, to engender more involvement and cross-fertilization. Also, the Executive Subcommittee should watch for ways "to increase the sense of being one Committee."
Mr. Scanlon observed that the diversity within the Committee is a strength, and he predicted that the heavy workload would continue because Congress is contemplating new assignments in the privacy bills.
Ms. Greenberg raised the practical issue of the scheduling of break-outs and whether or not to force choices by scheduling meetings concurrently.
The group then turned to the subject of new members to fill the three vacancies. Mr. Scanlon described the process of solicitating nominations within HHS, which yielded two to three dozen, plus publication in the Federal Register. A Data Council work group will process the nominations and select candidates whom the Data Council chairs will recommend to the Secretary.
Members discussed priorities regarding areas of expertise, focusing in particular on long-term care, privacy expertise/ advocacy, and consumer issues. The demands on members' time were mentioned as a prohibitive factor for some possible candidates. The need for balance rather than single-issue advocacy also was noted, because all members must address a range of issues.
The Subcommittee discussed the possibility of terms or rotation for Work Group and Subcommittee chair positions, with a two-year cycle. They agreed to recommend the idea of two-year terms to the Committee at the next meeting. At Dr. Iezzoni's request, Dr. Lumpkin said he also would talk periodically with Subcommittee chairs to see how things are going.
Ms. Greenberg discussed guidelines for the conduct of Committee business. One provision is that any member with a potential conflict of interest is to declare their recusal from discussion and voting on any item on the agenda at the beginning of the meeting, after the agenda is reviewed. If other issues involving a conflict of interest come up during the meeting, affected members are to recuse themselves at that time. In addition, full public disclosure of relevant financial interests is required of new members.
The group discussed issues and practices in this area, including the extent to which the reasons for self-recusal need to be explicit and public. They accepted Ms. Greenberg's proposed process (as stated above), and asked her to alert members with possible conflicts of interest in advance, so they are prepared to recuse themselves. They also asked staff to advise the entire Committee that the procedure will be instituted at the June meeting, and to encourage them to review the agenda in advance.
The Executive Subcommittee was authorized by the Committee in February to finalize the 1998 HIPAA Report to Congress and the 1996-98 Report, adjudicating any comments received from members. Cover transmittal letters are over Dr. Detmer's signature for the 1996-98 report and Dr. Lumpkin's for the HIPAA Report to Congress.
Ms. Greenberg reviewed suggested revisions to the Foreword to the 1996-98 Report, authorized by Dr. Detmer (the author). The Subcommittee approved the revised Foreword, with an additional modification proposed by Dr. Lumpkin. They also agreed to attach the NHII paper at the end of the 1996-98 Report, to reduce the amount of front matter in the document. A footnote on the NII will be added to the NHII paper. Another small editorial change was approved.
They then reviewed Mr. Gellman's comments on both reports. Ms. Greenberg reviewed the process surrounding his objections at the February NCVHS meeting: his comments in the meeting, and the unsuccessful efforts of a task group (of which he was a member) to find mutually acceptable language on the unique individual identifier. She noted that the 1996-1998 report was subsequently revised, at his suggestion, to reference the Committee's historic support for use of a unique identifier for individuals. In response to the revised report, Mr. Gellman sent dissenting views and instructions for their inclusion with the published reports.
The Committee's attorney, Deborah Tress, has informed the Executive Secretary that there is no mention in any relevant legislation of how to handle minority views. She has advised the Executive Subcommittee to deliberate on how to handle this matter.
It was moved and seconded that the Executive Subcommittee adopt the 1996-1998 Report with the aforementioned revisions. The Subcommittee discussed this motion and considered a number of alternative courses of action.
Mr. Scanlon noted that by virtue of having been submitted, Mr. Gellman's comments are already part of the Committee record and are available as a public document. The Subcommittee agreed that to give them a public airing, Mr. Gellman's comments would be attached as an annex to the February minutes of the full Committee, and his most recent comments on the Report would be attached to the minutes of the present (4/21/99) meeting.
Subcommittee members expressed concerns about factual errors in Mr. Gellman's comments, which assert incorrectly that no testimony was taken on the unique individual identifier. The aforementioned motion was amended to include an additional revision to the Report, namely, the following statement: "In the development of these recommendations and subsequent HIPAA recommendations, public testimony was taken by the Committee on the benefits, costs and risks of adopting a unique identifier for individuals." The Subcommittee unanimously passed the amended motion, approving the 1996-1998 Report as adjudicated.
They turned their attention to the HIPAA report to Congress. Mr. Scanlon reviewed revisions made in response to comments at the February NCVHS meeting. The Subcommittee then unanimously passed a motion approving the report as amended, and approving that it be forwarded under Dr. Lumpkin's cover letter, with Mr. Gellman's full statement attached at the end and referenced in the table of contents.
Members agreed to include these agenda items:
Dr. Cohn raised the question of a session on data content in September. It was agreed that the CPR Work Group would handle preliminary planning and see if things come together before September.
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. June 22, 1999 ________________________________________________________
Chair Date