NCVHS Executive Subcommittee Meetings

Summary

June 9, 2005, Washington, DC

August 15-16, 2005, San Francisco, CA

Overview

The NCVHS Executive Subcommittee met for a half-day on June 9 in Washington, D.C. (HHS Building) and for a day-and-a-half-long retreat on August 15-16 in San Francisco (Hotel Monaco). These meetings took place during a period of intense activity and change in the Department, related to its health information technology (HIT) initiative. On June 7, the Secretary announced the creation of the American Health Information Community (AHIC) and the release of four RFPs. Plans continued to develop over the summer. National HIT Coordinator Dr. David Brailer participated in both the June and August meetings, briefing the group on the thinking behind AHIC and the RFPs and discussing implications for the Committee. In response, the group explored how to support the HIT initiative while continuing to pursue the other priorities of the Committee and Department. The Subcommittee addressed the following topics in its two summer meetings:

  • New NCVHS contributions to the Department’s HIT initiative
  • Relationships with the NCHS Board of Scientific Counselors and other bodies
  • Forthcoming reports and a possible communication plan
  • Subcommittee/Workgroup goals and work plans
  • Budgetary issues for FY2006
  • Plans for forthcoming full Committee meetings

It took the following ACTIONS:

  1. The Subcommittee agreed to appoint Dr. Carr as liaison to the National Advisory Committee (NAC) of AHRQ. The NAC and NCVHS have overlapping and synergistic missions. The group agreed that NCVHS would only appoint liaisons to governmental agencies. It was announced that Dr. Scanlon would serve as NCVHS liaison to the NCHS Board of Scientific Counselors.
  2. The Subcommittee gave final approval to the report on race and ethnicity data, provisionally approved at the June full Committee meeting.
  3. As a cost-saving measure, the Subcommittee approved the following policy: There will be no change to full Committee and Executive Subcommittee minutes. NCVHS will continue to obtain transcripts for all meetings. For Subcommittee and Workgroup meetings, abbreviated minutes will be prepared, following specifications outlined by staff, unless a Chair and lead staff specifically request full minutes with summaries of the presentations and discussion.

New NCVHS Contributions to the Department’s HIT Initiative

Dr. Brailer

Both meetings began with presentations by and discussions with Dr. Brailer. In June, members talked with him primarily about the NCVHS-AHIC relationship, concluding that relationships and roles would evolve in what was still a “fluid” time. Dr. Brailer stressed that AHIC’s creation is “a huge opportunity” for NCVHS, and that the new body would need the Committee’s expertise. In the light of the new initiative, Subcommittee and Workgroup Chairs sought his suggestions on shaping forthcoming NCVHS recommendations on privacy, personal health records and standards so they would be most useful to the Department. The group later planned a letter and fact sheet about NCVHS, for use in conjunction with a June meeting between Dr. Cohn and the Secretary.

At the August retreat, Dr. Brailer invited NCVHS to participate in the HIT initiative, particularly in relation to “infrastructure” aspects—i.e., addressing such issues as alignment, interoperability and long-term implications. He named five infrastructure topic areas, the first four of which are the subject of the initial RFPs. A sixth topic was introduced in discussions following the August meeting, with the fifth and sixth items remaining somewhat tentative.

  1. Certification
  2. Architecture
  3. Privacy/security
  4. Standards harmonization
  5. Economics
  6. Medical knowledge

Dr. Brailer noted the many interdependencies and interactions among these topics. He contrasted the somewhat slower-moving infrastructure activity with AHIC’s faster-moving “breakthrough issues” or “use cases” —some of which, he noted, the Committee may want to engage as well. He also reported that HHS has commissioned a meta-report on the state of HIT adoption, due in Spring 2006.

Executive Subcommittee Discussion

After his departure, the group continued to explore possible NCVHS roles and responses to this invitation. Without exception, members and staff welcomed the opportunity and favored NCVHS involvement in the initiative. They foresaw an important role for the Committee in taking a holistic approach, bringing to bear the Committee’s population health and quality perspectives, and helping the Department integrate the RFP areas. They felt that the Committee’s expertise, deliberative process, connections to the wider community and consensus development skills were all well suited to the opportunities being offered, which they regarded as an extension of what the Committee is already doing. They noted that the Committee could guide the RFP contractors with respect to the information needed in their respective areas.

It was stressed that the initiative is at an early, developmental stage and the details have yet to unfold. Members noted the likely need for additional resources (staff, expertise and funding), in unknown amounts, and the possible need to bring in outside experts in some areas. The demands on members’ time was another concern, along with what aspects of the Committee’s agenda might have to be deferred. The importance of being nimble while remaining true to NCVHS process was stressed, along with the merits of scalability, to ensure that the Committee is not overwhelmed. It was suggested that the Committee take the initiative in suggesting a process to the Department.

The group also discussed the importance of keeping these HIT activities in perspective and ensuring that the Committee can pursue priorities and responsibilities that are not encompassed by the HIT initiative. The topics mentioned in this regard (all of them Departmental priorities, as well) included:

  • Integrating the health statistics and NHII visions
  • Health information, as distinct from health care information
  • Information architecture, as distinct from systems architecture.
  • Identifying the barriers to HIT related to literacy, health literacy and technology access
  • Other population health priorities
  • HIPAA responsibilities
  • Other items on Subcommittee and Workgroup agendas, as noted below

Organizational Implications

Subcommittee members and staff began thinking about the organizational implications of the proposed new responsibilities. At a minimum, they acknowledged the need to share skills across the Committee, through mechanisms such as matrix management. The question of where security should be placed structurally within NCVHS was noted. In general, this thinking added momentum to the awareness of the many overlaps among the domains of NCVHS work and the need to address many issues at the full Committee level. As noted, the need for outside expertise was discussed, along with the fact that FACA rules now permit the addition of non-members to advisory committee subcommittees & workgroups.

After suggesting that the Committee might put itself at a disadvantage if it only offered to work on some of the proposed tasks, Ms. Greenberg offered this “straw proposal” for allocating the infrastructure topics among the various NCVHS groups, given adequate resources:

  • Standards harmonization: Subcommittee on Standards and Security and Subcommittee on Populations, with Quality Workgroup input (the RFP says public health partners are to be included
  • Certification: Subcommittee on Standards and Security
  • Privacy and security: Subcommittee on Privacy and Confidentiality, augmented by experts on security
  • Architecture & economics—NHII, augmented by Subcommittee on Populations & Quality Workgroup

Members were generally receptive to this straw proposal.

Next Steps

The Executive Subcommittee treated the ideas emerging from this discussion as provisional, pending review with the full Committee. To facilitate planning, they agreed to hold a conference call with other Committee members prior to the September full Committee meeting. In addition, they developed the concepts and tone of a letter to the Secretary, for Dr. Brailer to review before Labor Day, asking asked Mr. Scanlon to draft the letter.

Relationships with NCHS Board of Scientific Counselors and Other Bodies

At the August meeting, Drs. O’Neill and Sondik reported on the maturing role and activities of the BSC, and the group discussed areas of common interest and possible joint activities. Dr. O’Neill invited NCVHS to suggest things the BSC should look at, and Dr. Sondik encouraged them to keep an eye on “whether the Center is doing what it should be doing.” Measures to protect the confidentiality of vital statistics and restrictions on dissemination of the data were identified as an area of close synergy between the groups. Dr. Sondik said NCHS wants to work with Dr. Friedman to move forward with the health statistics vision in the light of his findings on four countries; Dr. Friedman also will be invited to the November NCVHS meeting. There was discussion of joint NCVHS/BSC work on population health topics, and also of the need for further integration of the Department’s data activities.

On another topic, the Subcommittee agreed to appoint Dr. Carr as liaison to the National Advisory Committee (NAC) of AHRQ because of the overlapping and synergistic missions of the two bodies. They agreed that NCVHS would only appoint liaisons to governmental agencies, when appropriate. The new Medical Director of the Department of Homeland Security (DHS) will be invited to the November or February NCVHS meeting, to discuss coordination of standards and infrastructure work.

Forthcoming NCVHS Reports; Communication Planning

In August, the Subcommittee approved the final version of the report on race and ethnicity data, provisionally approved at the June full Committee meeting. The group also discussed draft reports on PHRs, HIPAA implementation, and 2003-2004, which will be presented to the full Committee for approval in September. They considered the possible need for an overall NCVHS communication plan to heighten public awareness of the Committee’s reports. They discussed several steps for publicizing and distributing the report on race-ethnicity data and the idea of developing an “embellished” version of the PHR letter-report. It was suggested that press releases be issued (by HHS/ASPE) when new NCVHS reports are available. Members also asked for a power-point template for use in presentations about NCVHS.

Subcommittee and Workgroup Reports

Subcommittee and Workgroup Chairs reported on their groups’ plans for the coming year, tempered by the understanding that plans will change and evolve as the Department’s needs take shape in regard to the HIT initiative. The following summaries reflect the thinking as of mid-August.

Subcommittee on Standards and Security

The Subcommittee has developed a schematic illustrating its goals and framework and showing the Subcommittee’s four functions and multiple audiences. Its plans for the coming year include hearings on the ROI for HIPAA, work on the secondary uses of data, and review of issues related to matching records to patients, authentication, and e-prescribing. The Executive Subcommittee agreed that secondary data uses should be on the agenda of the November full Committee meeting because of the broad interest in this topic.

Subcommittee on Privacy and Confidentiality

The Subcommittee is holding five 2-day hearings in 2005. It will have a recommendation on the NHIN at the November meeting. In the coming year, it will take up three issues related to HIPAA—patient control of personal health information, privacy practices and consent, and accounting for disclosures. Otherwise, it will hold its work plan open so it can respond to requests from the Secretary.

Subcommittee on Populations

The Subcommittee will monitor responses to its new report on race-ethnicity data and pursue next steps in that area. It will decide on other short-term deliverables in September. A major longer-term interest is determining how to measure health quality and its determinants at the population level, an endeavor that will be approached in close coordination with the Quality Workgroup. The vision for 21st century health statistics will guide the Subcommittee’s long-term work.

Quality Workgroup

The Workgroup clarified its interest in the intersection between IT, quality and the knowledge base at a June retreat. It will decide how it will pursue these interests at a meeting on September 7. It sees its work as inseparable from the mission of the full Committee, with many intersections and overlaps with the purviews of other NCVHS sub-groups. There are also links to the AHRQ agenda and possibly to the A-scope of work of CMS. The Executive Subcommittee discussed having a CMS briefing on the latter.

NHII Workgroup

When the Workgroup completes its letter to the Secretary on its findings on personal health records (PHRs), it will move on to new projects, primarily related to the Department’s HIT initiative. The Executive Subcommittee discussed tentative plans to publish a somewhat expanded (but substantively unchanged) report on the Committee’s PHR findings, as a continuation of the series of reports on the NHII.

NCVHS Budget

Ms. Greenberg led the group in a candid discussion of the NCVHS budget and possible economy measures. Several ways of economizing were identified. Despite the cost of audio-visual equipment and staff, the group affirmed the importance of good-quality sound for full Committee meeting attendees, phone participants and Web broadcast listeners. On the staff’s recommendation, the Subcommittee approved the following policy: For Subcommittee and Workgroup meetings, abbreviated minutes will be prepared, following specifications outlined by staff, unless a Chair and lead staff specifically request full minutes with summaries of the presentations and discussion. NCVHS will continue to obtain transcripts for all meetings. There will be no change to full Committee and Executive Subcommittee minutes.

Future NCVHS Meetings

Plans for the September meeting were confirmed in June. In June and August, the following agenda items were identified for the November meeting:

  • Update from the NCHS and BSC on use and dissemination of vital statistics data from the States
  • Half-day on secondary data uses
  • Update from Dan Friedman
  • Action on privacy
  • Possible update on international classification
  • Possible invitation to DHS Medical Director (or in February)

Meeting Participants

Executive Subcte Members June 9, DC August 15-16, SF
Simon P. Cohn, M.D., Chairman X X
Jeffrey S. Blair X X
Robert W. Hungate X X
Harry Reynolds X X
Mark A. Rothstein X X
Donald M. Steinwachs, Ph.D. X X
Staff    
Marjorie Greenberg, NCHS X X
James Scanlon, ASPE X X
Debbie Jackson, NCHS X X
Katherine Jones, NCHS X X
Mary Jo Deering, NCI   X
Maya Bernstein, ASPE X X
Audrey Burwell, OMH   X
Anna Poker, AHRQ X X (by phone)
Marietta Squire, NCHS   X
John Weis, AHRQ   X (by phone)
Susan Kanaan, contractor   X
Liaisons    
June E. O’Neill, Ph.D., NCHS BSC   X
Edward J. Sondik, Ph.D., NCHS X X
Steven J. Steindel, Ph.D., CDC X X
Karen Trudel, CMS X X
Michael Fitzmaurice, Ph.D. X X (by phone)
Guest presenter:    
David Brailer, M.D., ONCHIT X X