The NCVHS Executive Subcommittee met on Thursday, January 7 in the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:
(Subcommittee work plans are indicated in summary.)
Dr. Detmer began the meeting by announcing that he had accepted a post at Cambridge University and would be leaving the National Committee after the February meeting.
He then reviewed the agenda for this meeting.
The Subcommittee has been developing comments on the Health Information Privacy Model Act being proposed by the National Association of Insurance Commissioners (NAIC). It is preparing a letter to the NAIC highlighting the Committee's concerns; the letter will be presented for approval at the February meeting.
On February 2, the Subcommittee will meet to focus on the flows of information in the pharmaceutical industry. Subsequently, the Subcommittee will look at use of individually- identifiable health information by pharmacy benefits management firms and self-insured employers. It also stands ready to advise on privacy legislation or regulations.
Dr. Detmer called attention to confidentiality and security issues with personal information on the Web, a concern encountered by the NHII Work Group. He also noted that the Privacy and Confidentiality Subcommittee's work load relative to its size should be a consideration in identifying new NCVHS members.
Currently, the Subcommittee is working hardest on the Congressionally-mandated report on patient medical record information. Its December hearings highlighted the complexity of the subject, which the Work Group is still trying to "get its arms around." It will summarize the hearings in a write-up for the Secretary, which will probably come to the full Committee in June. The February NCVHS meeting will feature a presentation concerning HL-7 and immunization data standards.
The group discussed this and other auspices (e.g., NHII Work Group) for looking at the exemplary work of Australia, the U.K., and Canada. Dr. Fitzmaurice described discussions to sponsor a key Australian informatics person in the U.S. for a year or two. The Executive Subcommittee and others agreed on the desirability of coordinating these activities. Dr. Iezzoni added that one of the papers commissioned for the 21st century project will be on the aforementioned national systems.
Dr. Braithwaite expressed the government's appreciation for the helpful participation of members of the Standards and Security Subcommittee on the HIPAA implementation teams.
Three Subcommittee activities await completion, pending further work by contractors and staff and development of recommendations by the Subcommittee:
The Subcommittee needs to meet in March or April to work on these projects.
On January 22, the Subcommittee launches a project on data requirements for the continuum of care, with a panel that will review the issues. The Subcommittee will then develop its work plan. The group discussed policy for the use of travel funds for this and other meetings.
Dr. Iezzoni acknowledged Dr. Friedman's hard work on the project on health statistics for the 21st century. The latest document for the project is on the NCVHS Web site. All six papers have now been commissioned for this project. The group discussed staffing for this and other NCVHS subgroups.
The Work Group has defined four areas for its work plan, two of which are integral to the work of the Subcommittee on Populations:
Ms. Coltin noted the opportunities to interface closely with other NCVHS Subcommittees and Work Groups. Products from the latter two aspects of the work plan are likely to be ready in 2000.
Ms. Greenberg suggested that theWorkgroup’s activities would be helpful to the Public Health Data Standards Consortium, which is being established in response to recommendations made at the November 1998 Workshop on Implications of HIPAA’s Administrative Simplification Provisions for Public Health and Health Services Research. The Consortium will be looking at what type of information is critical for performance measurement and how to partner with health plans around advocating for collection of these high priority data elements. At Dr. Detmer's suggestion, she said the full Committee would be supplied with copies of an article in the Millbank Quarterly on the work of the Quality Commission and IOM.
The Work Group is deciding how to act on the concepts outlined in the concept paper on the NHII. One project is to focus on the work already being done on computerizing clinical and population records, both in the countries mentioned above and in the U.S. by the DOD and the VA. An overview of various national approaches in terms of their relevance to the U.S. is being developed. The idea is to lay out a blueprint for leveraging what the other entities are doing. This dovetails with the work of the Work Group on Health Statistics for the 21st century.
Another identified need is a glossary of terms and definitions for discussing large-scale systems-- e.g., population records. Yet another is a matrix to help track progress in specific areas, especially those addressed by various NCVHS work groups and subcommittees, and to help visualize their interactions.
These projects are likely to take the Work Group a couple of years. It also has talked of doing a trend and power analysis of the various "infrastructure movements" in the U.S. A work plan is expected for the June NCVHS meeting.
Dr. Deering reported that two senior people in the office of the Assistant Secretary for Management and Budget are very interested in this inventory control and will share a report they are working on. A third person from ASMB is interested, and Maureen Williams will be assigned as staff to the Work Group. Also, Dave Riley from DOD is looking at the applications of DOD's work on technology systems to the NHII work.
Mr. Scanlon reviewed the requests for the FY1999 budget for various purposes and issues concerning contractors. He urged members to advise him or Ms. Greenberg at the earliest indication of need for contractors, of projects that are beyond normal dollar amounts, and of plans for out-of-town meetings. He reiterated that travel funds are limited. The group briefly discussed the relative costs and benefits of holding meetings in Boston when several participants live there.
Dr. Detmer characterized the resource situation as better than in the past but still not as good as the Committee would like. He noted the Committee's evolving relationship with the Data Council and the latter's growing interest in collaboration, something that is very positive but may necessitate more ample funding. Ms. Greenberg said there is already some cost sharing with NCHS and CDC, and there may be potential with HCFA for the "post-acute" care project. Dr. Detmer noted that it may be possible to get extra funding to use contractors to augment the Committee's limited personnel and time.
Ms. Greenberg observed that the Executive Subcommittee at its October meeting seemed to favor a half-day symposium in conjunction with the June 2000 meeting, followed by a reception. The 45-year history would be updated to provide an historical perspective on the 50 years. Dr. Detmer encouraged that this or a related document also look to the future. He suggested that Dr. Kerr White, NCVHS Chair from 1975 to 1979 and an important resource in developing the 45-year history, be asked to speak on the Committee's history. Another speaker could look ahead. The reception might be held at the National Academy of Sciences. One or more foundations may be approached about underwriting the event, as was the case for the 45- year observances (Kellogg and Robert Wood Johnson).
Dr. Lumpkin remarked that the event would be a good opportunity to talk about the Committee's role in the new millennium. The Committee's challenge is to integrate the national and the non-national, and this event could afford a way to relate to all its constituencies. Dr. Detmer observed that the event could reinforce understanding of the Committee's role as the nation's health information policy advisory body.
Dr. Sondik suggested having the event on the Hill, with exhibits focusing on future directions in health technology. Congress and staff could be invited. Some members supported the idea of using the event to educate people on the Hill. Roles for Friends of the NLM, NHS, NCHS, and The Georgetown Conference Center were also mentioned. Dr. Detmer said he would elicit the views of The Friends of the National Library of Medicine.
Regarding responsibility within NCVHS for planning the event, the group agreed that it would reside with the Executive Subcommittee.
Dr. Detmer reported on progress toward naming his successor, possibly as Acting Chair. This is a Secretarial appointment. He said his greatest concern is to preserve continuity. He noted that the structure adopted in 1998 seemed to be working for the Committee. He invited discussion on the general status of the Committee and on priorities for new member appointments. Discussion of possible candidates took place off the record.
Mr. Scanlon then reviewed the areas of expertise that the Committee identified in 1996 as needing representation on NCVHS. Dr. Detmer called attention to skill in public communications as a need. Others highlighted by members at the current meeting included:
(* These four areas were given special priority, in the order listed. The last five on the list were suggested by Dr. Sondik.)
The categories will be incorporated into the Federal Register notice regarding NCVHS appointments.
The group then discussed the varied levels of participation and attendance by Committee members and how this should be handled. There was sentiment that travel funds should not be used to fly anyone in for half a day (unless the meeting is only scheduled for that length). It was also suggested that members, and especially chairs, be sensitized to the financial burden of travel costs; but it was agreed that the greater issue is the need for everyone's full participation. The group agreed to bring these matters to the attention of the full Committee. Dr. Detmer expressed his view that everyone on the Committee is making a contribution and that allowances should be made for the differences in people's lives. However, a conversation between the Chair and any individual not making an adequate contribution would be appropriate.
The issue in this context is whether --and if so, how-- the Committee wants to engage the issue of demographic data collection in HIPAA standards. Specifically, should the Committee take a position on whether race and ethnicity should be collected on the enrollment and encounter transactions? Members suggested various ways of framing it and discussed some of the history regarding the UHDDS, the Committee's core data element recommendations, and so on. The focal questions include where the data should be collected, who needs the information, and whether those who need it can get access to it.
Dr. Starfield and Dr. Braithwaite asserted that these data elements are critical to patient care and should be included. However, Dr. Braithwaite explained some of the problems with collecting the information. Dr. Detmer noted that this question was not referred to NCVHS by the Department; rather, the Committee would be taking initiative because it deems it important. He proposed that the issue be brought to the full Committee from one of the subcommittees. Ms. Coltin suggested that it is currently a "non-issue" in that the Committee's core data recommendations already address it. After considering asking either the Subcommittee on Standards and Security or the CPR Work Group to look into the issue, it was agreed that the former would be asked to review the recommendation of the Infrastructure Team once the Team has completed its deliberations on this topic.
Dr. Detmer noted the past difficulties encountered in scheduling senior people in the Department to meet with the Committee. Ms. Greenberg suggested that Mr. Scanlon, Dr. Braithwaite and Mr. Fanning continue to provide the regular Departmental updates. Dr. Detmer agreed and proposed that Dr. Satcher, Dr. Hamburg and others be issued a standing invitation to attend NCVHS meetings at their convenience, but that they not be counted on or included as agenda items.
The Subcommittee then reviewed plans for the February 2 Subcommittee meetings and the February 3-4 full Committee meeting and breakout sessions.
Ms. Greenberg asked those present to send their comments on the 1996-1998 report to Ms. Kanaan, and on the 1998 HIPAA report to Congress to her. She hopes to submit the two together by the end of February, after the full Committee has reviewed them and the Executive Subcommittee has signed off on them. She called attention to a summary of the Committee's 1998 accomplishments, which she prepared for the Secretary.
Dr. Detmer and others praised the quality of the NCVHS Web site, maintained by Judy Ball.
The Executive Subcommittee will meet sometime between February and June, possibly on April 26. Members will be queried.
The June 1999 NCVHS agenda will include:
Finally, Dr. Fitzmaurice reported that federal departments are meeting on January 12 to brief each other on their standard-developing activities. AHCPR will then publish a document surveying this information. This may be useful to NCVHS, and he will ask members for input on a draft.
Dr. Detmer 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 April 21, 1999
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Acting Chair Date