The Executive Subcommittee of the National Committee on Vital and Health Statistics was convened at on July 22, 1998 in the State of Illinois Building in Chicago, Illinois.
Present:
Don Detmer, M.D., Chair
Kathryn Coltin, M.P.H.
Kathleen
Frawley, J.D., M.S., RRA
John Lumpkin, M.D.
Barbara Starfield,
M.D.
Marjorie Greenberg (ex officio)
James Scanlon (ex officio)
Marjorie Greenberg, Executive Secretary, NCHS
James Scanlon,
Executive Staff Director, ASPE
Lynnette Araki, NCHS
Judy Ball,
Ph.D., ASPE
William Braithwaite, M.D., Ph.D., ASPE
Stewart
Streimer, HCFA
Wendy Liffers, J.D., ASPE
Deborah Tress, J.D.,
CDC
Michael Fitzmaurice, Ph.D., AHCPR
The Executive Subcommittee met following the first NCVHS hearing on the unique individual health identifier. Dr. Detmer introduced and welcomed Deborah Tress, who will advise the Committee on its guidelines and other matters. Ms. Tress is in the General Counsel's Office at CDC in Atlanta. Moving into the first agenda item, he noted the many positive comments he had received about the Committee's reorganization.
The Subcommittee's current focus is the unique identifier. It also will be working on responses to the public comments on the NPRMs, and its Workgroup on Computer-Based Patient Records is getting organized.
On claims attachments, Mr. Streimer said the implementation team is working on the NPRM and hopes to have funding for testing soon. The target date is December for publishing the first batch of final regulations for NPRMs that have already been released. The number of comments on these NPRMs has been manageable, which Ms. Frawley said reflects people's confidence in an open process. The group agreed that it would be useful to have data on the relative numbers of comments from individuals and organizations/associations.
Ms. Fyffe is organizing participants for a two-hour roundtable on health care fraud and abuse, to be held the afternoon of September 15. In November, the Subcommittee plans to focus on the use of information for pharmaceutical marketing. Ms. Frawley expressed appreciation for Ms. Liffer's support.
A discussion of sponsorship of the next hearings on the individual identifier stimulated a discussion about quorums, having a strong Committee presence at hearings, and the responsibility of every member to be ready to make an informed decision on the identifier issue.
It also was noted that the Department had little success in getting people in the privacy community to attend the Chicago hearings. They hope for a better turnout at the Washington, D.C. meeting, and the date of the third hearing will be announced at that time if the second meeting is not convenient. Ms. Greenberg said that it might be possible to assist organization representatives who can only participate if they have help with travel expenses. The group also discussed the format and structure of forthcoming hearings on the identifier.
The two recent developments are a two-day hearing in July on the islands and territories, and work on the Subcommittee's new work plan and charge. Ms. Araki, who had a key role in the hearing on the insular areas, said there was an excellent turnout and both the island representatives and federal officials praised the opportunities for dialogue. The Subcommittee expects to submit a report and recommendations to the November meeting, following input from the islanders, who stressed the need for follow-through.
Ms. Greenberg said that a Subcommittee group has been actively working with Dr. Sondik to plan activities on the future of health statistics, identifying topics and writers for four or five white papers. CNSTAT will be asked to analyze past recommendations and responses. The working relations between CNSTAT and NCVHS are still being worked out. The first and major workshop is tentatively scheduled for February or March, 1999. Staffing has worked well. Subcommittee members are also looking at the survey integration plan.
The next steps for this group are to draft and approve a charge and work plan, and to plan a panel for the November full Committee meeting, based on a conceptual framework Ms. Coltin will propose for organizing information. The group discussed how the Workgroup could meet and approve its charge and work plan in time to have it considered by the full Committee on the 16th.
Dr. Lumpkin proposed that the Committee commission two evidence-based papers that would 1) delineate the potential benefits and uses of a unique health identifier and 2) analyze the risks posed by identifiers. Members were receptive to the idea, and mentioned several possible resources.
They discussed how to move the public conception and debate beyond the preoccupation with the specter of "a giant clearinghouse and national database." It was agreed that two important measures are to articulate a vision of what is being worked toward, and to offer specific information about the steps being taken to mitigate the risks. Dr. Detmer emphasized that the Committee must move to assume its responsibility for public education on the health information infrastructure, making it understandable to the media and the public.
Dr. Lumpkin suggested preparing summaries of NCVHS recommendations and reports for the web page, stating in accessible terms what the issue is and what approaches are proposed. Dr. Starfield advocated the use of "punchy anecdotes" that describe the use of data to solve problems. Ms. Frawley described a chart she has developed showing the movement of data when a person is in the hospital. She also observed that people erroneously associate the identifier with immediate access, when these are and must be separate.
Dr. Detmer noted the relevance of the evolving NCVHS paper on the health dimension of the national information infrastructure, which will be reviewed by the NHII Workgroup and then discussed at the September full Committee meeting.
Ms. Tress briefed the Subcommittee on the applications of the Federal Advisory Committee Act (FACA) and the Freedom of Information Act (FOIA) to NCVHS activities in the areas of recordkeeping, access to documents, meetings, and other communications. The group used these interpretations to clarify and fine-tune the Committee's guidelines, which Ms. Greenberg will revise and circulate, for presentation to the Committee in September.
A few key principles in the laws are summarized here:
In the context of FACA and FOIA, the Subcommittee agreed to propose guidelines to the Committee that include the following:
The Secretary has received a letter from a law firm on behalf of the Association of American Physicians and Surgeons, containing allegations about secret NCVHS meetings. The Department is unaware of any such meetings but will respond and request specifics. Dr. Detmer also stated that he is unaware of any secret NCVHS meetings. The Subcommittee agreed not to give attention to spurious charges, but that it is appropriate to reiterate the Committee's strong belief in conducting its business in the open and bringing deliberations into the open as soon as it is clear that they represent the views of Committee members.
It was clarified that the Committee or a Subcommittee must have a quorum to begin a meeting and to take substantive votes. However, if a quorum is lost in the course of a meeting, it is appropriate to conclude the agenda. If a member of the Committee questions the quorum, it is possible to continue business as an open working session. (Dr. Lumpkin cited Sturgess on these issues.) The group affirmed that despite this tempering of the quorum rules, they do want to have quorums for meetings.
In this light, Dr. Detmer stated that it may not be possible for Committee members to serve officially on more than one Subcommittee, although they are encouraged to participate in more than one.
Ms. Araki asked for discussion of major projects to be considered for FY 1999, to guide budget preparation. Discussion focused on the need for public education/public relations support in the form of a consultant, as well as some use of Department staff resources. Members discussed the need to impress on the Department the importance of public education and media relations on the unique identifier issue, noting that the Committee has already provided some 30 interviews.
The following dates were tentatively reserved for full Committee meetings. (The day in parentheses is held for ancillary meetings.)
The Subcommittee and staff worked through the timing for the comment period on the NOI and agreed that the Committee should have a recommendation ready by the first meeting of 1999, at the latest.
The Subcommittee approved a schedule for completing the approval process for minutes.
September:
November:
September:
November:
The group discussed staffing arrangements. Dr. Detmer praised the responsiveness of Dr. Hamburg and Dr. Eisenberg, and Mr. Scanlon and Ms. Greenberg said they are firming up the arrangements. It was agreed that there should be an orientation for staff so they understand their roles and responsibilities. Mr. Scanlon also was asked to provide Subcommittee chairs with bios of staffers.
Dr. Detmer was authorized to write a letter of appreciation on behalf of the Executive Subcommittee to Suzanne Stoiber, who is leaving the Department to be the Executive Secretary of the Institute of Medicine.
The Subcommittee approved a revised letter to the Secretary on the reports of the President's Commission on Quality and Consumer Rights and Responsibilities, with a minor modification.
The meeting was adjourned at 2:30 p.m.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
/s/ Don E. Detmer October 17, 1998
Chair Date