Robert Wood Johnson Foundation
Princeton, New Jersey
MEETING SUMMARY
The Executive Subcommittee Retreat of the National Committee on Vital and Health Statistics was convened on November 21, 2003 in Princeton, NJ. The meeting was open to the public. Present:
The NCVHS Executive Subcommittee, lead staff and agency liaisons held a one-day retreat at the Robert Wood Johnson Foundation headquarters in Princeton, NJ on November 21. The agenda included the transition in Committee membership, strengthening staff relations, aligning with HHS health objectives, coordinating with the NCHS Board of Scientific Counselors and other bodies, workgroup and subcommittee accomplishments and plans, crosscutting issues, and future meetings.
[Note: Actions are underlined in context.]
Following introductions, the Subcommittee began by discussing plans for the transition to new NCVHS members. New members have received letters of invitation; those who accept will be assigned a current member as a mentor. The special late-January meeting of the full Committee will be used for the transition, with a dinner honoring outgoing members and an orientation session for new ones. The briefing will include information about the history and next phase of CHI. Ms. Berek pointed out the confusion caused for new people when the Committee talks in acronyms. The idea of a glossary was mentioned.
Mr. Scanlon reported that ASPE staff is working on renewing the NCVHS charter.
Dr. Lumpkin remarked on the exceptional progress made in the past year by both NCVHS and the Department. He and others cited the Secretary’s strong support for the NHII initiative, CHI accomplishments, greater attention to race and ethnicity data issues, the Committee’s decision to recommend moving ahead on the transition to ICD-10, recommendations on PMRI vocabulary standards, and the expanded agency liaisons to NCVHS.
The group discussed new legislation on e-prescribing, which includes a mandate for NCVHS recommendations as well as a section establishing a new commission on systemic interoperability.
Dr. Lumpkin observed that the Committee’s accomplishments are the result of a partnership between members and staff. Letters of appreciation will be sent to each staff member, with cc’s to agency and operating division heads.
The group discussed how to generate greater understanding of and support for staff members’ participation in NCVHS on the part of their supplying agencies and operating divisions. Some agencies already see the value of participation and support their staff in doing so, while others do not. Members discussed another memo which is to go to agency heads from the Office of the Secretary, customized to each agency, describing the work of NCVHS and the importance of providing staff support. Various suggestions were made for points to include in the memo, while members agreed that it should be kept concise. One point to be made is that participating agencies get value from this relationship because of the pivotal work done by the Committee, work that is integral to HHS operations. Another point is that NCVHS staff work is a unique federal responsibility. In a later discussion of Departmental goals and objectives, it was noted that in encouraging staff participation, the Committee’s role in helping the Department accomplish its goals should be pointed out.
The staffing needs of specific NCVHS subgroups were also discussed — notably, the needs for more support for the Subcommittee on Populations and for OCR staff for the Subcommittee on Privacy and Confidentiality. Mr. Scanlon asked subcommittee and workgroup chairs to let him know of specific staffing needs.
Dr. Lumpkin observed that the current awareness and receptivity in the Secretary’s office provides opportunities to build an infrastructure within the Department around the Committee. A basic point is that the Committee can be more effective with strong staff support. Mr. Scanlon noted that the Committee is effective partly because it is part of a large, interactive network of forces in and around HHS.
Ms. Greenberg reported on a recently-completed annual report to GSA that is required of all advisory committees. She thanked Ms. Adler and Ms. Jackson for their work on the report. This year for the first time, the report included performance measures. It was determined that in the last year, NCVHS made 12 sets of recommendations, totaling 77 recommendations, and 71 percent of these were at least partially implemented by the Department. The process of pulling the report together was quite instructive, and the findings were encouraging, according to Ms. Greenberg. It was noted that the high success rate should be pointed out in the aforementioned memo to agency heads.
The group discussed possible spin-offs from this exercise, such as asking the Department’s view of NCVHS (which the Data Council could discuss) and asking the Committee’s other constituents (e.g., SDOs) the same question.
They also took up the question of the Committee’s overall effectiveness, noting that on the HIPAA side NCVHS has been very successful while in population health areas it has been less so, largely because of limited resources. They looked at the questions raised by the 29 percent of recommendations that are not implemented, noting that the Committee’s reach should exceed its grasp and also that it is difficult to define and measure success, given that implementation can take a long time and may be indirect.
Nevertheless, members agreed on the need to monitor responses to the Committee’s recommendations and to try to increase the success rate.
While some people proposed raising the Committee’s profile and other people’s perceptions of its role, Dr. Lumpkin suggested that NCVHS is positioned exactly where it should be as an advisory Committee to the Secretary. Implementation is up to the Department. Mr. Scanlon pointed out that the Committee’s influence extends beyond HHS; he added that every NCVHS recommendation influences the Department’s thinking in some way.
At the outset, the group agreed that the objectives of the Committee and the Department have converged in many areas, with disparities issues in particular warranting further attention. Mr. Scanlon noted that the formal expression of the Department’s goals and objectives is its strategic plan.
The group reviewed a summary of HHS strategic goals and objectives for FY 2003-8, mapping them to the work of NCVHS workgroups and subcommittees to determine how the Committee can be most supportive of the Department’s efforts. The goals, each of which has from two to seven associated objectives, are listed below, along with the NCVHS groups whose work relates most closely.
GOAL 1: Reduce the major threats to the health and well-being of Americans (Populations, NHII)
Here the discussion focused on the role the NHII Workgroup could play through its work on the personal health dimension in highlighting the overlay between prevention and health IT, both of which are strong interests of the Secretary. The group also discussed how to re-engage the mental health components of the Department in the Committee’s work.
GOAL 2: Enhance the ability of the Nation's health care system to effectively respond to bioterrorism and other public health challenges (NHII, Populations, Standards and Security, Privacy)
The major issue addressed in this context was the tension between HHS and Homeland Security and the potential for the Committee to have an integrating effect through creating a vision of ways the system can work together. The idea of a high-level hearing hosted by the NHII Workgroup, to look at core strategic issues, was proposed. Mr. Rothstein also noted the privacy issues related to sentinel event reporting.
GOAL 3: Increase the percentage of the Nation's children and adults who have access to health care services, and expand consumer choices (NHII, Populations, Standards and Security)
Medicare reform, e-prescribing and improved information systems were mentioned.
GOAL 4: Enhance the capacity and productivity of the Nation's health science research enterprise (NHII, Standards and Security, Privacy)
The group discussed workforce issues and a possible Committee role for objective 4.4 (application of health research results) in considering how to expedite the dissemination of lessons learned. The recommendations in the report on 21st century health statistics are relevant to this issue. Related activities are monitoring what’s going on in health care and optimizing the quality of the information available to health science research.
GOAL 5: Improve the quality of health care services (Quality Work Group)
GOAL 6: Improve the economic and social well-being of individuals, families, and communities, especially those most in need (Populations and the Committee’s integrating perspective; 21st century health statistics recommendations)
GOAL 7: Improve the stability and healthy development of our Nation's children and youth (Populations, NHII, Privacy)
GOAL 8: Achieve excellence in management practices (especially objective 8.5, concerning information technology use)
In conclusion, the group discussed the merits of raising the visibility of the Strategic Plan, which is posted on the Web site.
Ms. Greenberg described the structure and management of the NCVHS budget, noting that travel costs continue to increase and considerable contractual dollars were expended in 2003 from reimbursable funds. The group reviewed anticipated financial needs for the coming year.
They considered issues related to funding non-lead-staff travel for subcommittee meetings, especially related to the Subcommittee on Populations. They agreed that as a matter of policy, the staff member’s agency is the first funder, and if that is not successful, the Committee will try to help facilitate travel and could consider developing a fund for that purpose. This is an issue that should be emphasized in the Department’s letter.
This led to a discussion of other meeting considerations. Ms. Jones asked chairs to inform Committee staff well in advance of meetings if they do not need special equipment (e.g., PowerPoint projector). The group also discussed alternative meeting sites for use when space is not available in the Humphrey building, mentioning the new NCHS headquarters, CMS headquarters, and the new conference center. Members noted the need for better communication when meetings have to be moved from their announced location.
Plans were reviewed for a presentation by Drs. Starfield and Friedman, plus someone from the private sector, at the March NCVHS meeting. Having a futurist talk about the health system of the future is also being considered.
Dr. Sondik raised the question of how best to follow up on the 21st century health statistics report, and he cautioned against letting the vision for health statistics be lost amid the general progress on the NHII. In general, the group favored continuing to monitor progress on the health statistics vision through the full Committee. It was noted that new members need to be familiarized with this initiative.
In this portion of the meeting, Committee members and staff examined the issues that cut across multiple subcommittees or workgroups, first noting that 21st century health statistics falls in that category.
Dr. Cohn observed that standards issues are emerging in the context of other workgroups and subcommittees in ways that manifest a need for further education of Committee members about the standards development process and how to manipulate it. Members agreed to have a panel at the June meeting on the current status of the standards process and how to have an impact on it.
Members also agreed to invite Barbara Paul to brief the Committee on a CMS initiative on using data to measure quality, and to have a discussion about patient safety and a briefing on the Patient Safety Task Force and the IOM report. Ms. Cronin was asked to work with staff to help set up the panel. She said the Council on the Application of Health Information Technology (CAHIT) would be looking at the proliferation of standards related to patient safety, a matter of concern to NCVHS. Dr. Cohn said that after hearing the March panel, the Subcommittee on Standards and Security would determine the priorities for potential recommendations.
Mr. Rothstein raised the cross-cutting issue of the gaps in privacy protection left by the fact that HIPAA only applies to three classes of covered entities. Members agreed that identifying privacy gaps is consistent with the Committee’s charge.
Regarding coordination with the Data Council and CAHIT, the Executive Subcommittee agreed to designate Dr. Cohn as the regular Data Council representative. Dr. Lumpkin will represent the Committee on CAHIT.
Members discussed various approaches to involving regional health administrators in meetings held away from Washington, D.C., as the Subcommittee on Populations has done for its hearings. They agreed that involving the regional director from the outset in such meetings should be articulated as policy. The director can then involve the appropriate agencies.
Issues related to the Census Bureau were also noted. Members agreed that the Committee would like a more organic information-sharing relationship with the Bureau, and it encourages Census to identify staff to work with the Subcommittee on Populations. Mr. Scanlon was asked to facilitate that relationship.
Dr. Lumpkin noted that former NCVHS Chair Judith Miller Jones has raised an issue about e-coding and declining number of autopsies. After discussion, the group agreed that it would be useful to hold a joint meeting with the BSC in early 2005, and to propose this issue for the agenda. Dr. Sondik gave a status report on the new NCHS Board. Its members are enthusiastic, and they represent a broad range of perspectives, including health economics. He endorsed the idea of a joint meeting. In the meantime, June O’Neil will be encouraged to participate in NCVHS meetings as an invited liaison and included in NCVHS email traffic. (Subsequently, Dr. Aldona Robbins was named as the BCS liaison to the NCVHS, complementing Dr. Mays as the NCVHS liaison to the BSC.)
The Workgroup will hold full day planning session on December 19. Three of its members are retiring soon. This raised the broader issue of subcommittee and workgroup membership, and Ms. Greenberg noted that every NCVHS member should be regularly involved with at least one subcommittee/workgroup.
The Subcommittee will focus on CHI in December and January. Thereafter, it will monitor activity on ICD-10 and implementation of final HIPAA rules, deal with claims attachments and PMRI, and consider how to stabilize the HIPAA process. A final rule on provider identifier and proposed rules on plan identifier and claims attachments are expected. The Subcommittee is also concerned about interoperability standards for the EHR.
The Subcommittee will hold a series of hearings on the implementation of the privacy rule in several specific contexts, preparing letters after each hearing. The topics include banking, schools, Graham-Leach-Bliley, law enforcement, correctional facilities, off-shore medical care (e.g., medical transcription), fundraising, the payment chain, and non-traditional settings, in addition to work on the gaps in privacy protection. A hearing was held earlier in the week on public health and research.
Mr. Hitchcock enumerated a long list of topics on the Subcommittee’s agenda, including submitting two reports and looking at the National Children’s Survey issues, social and behavioral measures, the use of data centers, mixed race, and community-based research.
Dr. Cohn stimulated a discussion by noting the “ongoing angst” about capturing data on race and ethnicity and language. He asked whether there was some out-of-the-box way to actually make it happen without unreasonable burden on industry and others. The idea of a small research study was mentioned.
Ms. Burwell said the Subcommittee has talked about holding a hearing to gather background for recommendations on a public education strategy on race and ethnicity data. The Subcommittee has also talked about how to move mental health statistics from a marginalized status, an issue that Dr. Sondik said will also come up with the BSC.
Mr. Hungate offered comments and queries related to next steps for the Quality Workgroup, once it completes its report on findings from testimony over the last several years. He said he favors broadening the agenda from health care quality to health quality, i.e., looking at “the result as opposed to the process of achieving it.” He noted the relevance of work on quality improvement being done by CMS, DOD, and VA. Risk-adjusted outcomes are of central importance in his view, and NCVHS should help enhance the HHS information role of providing better consumer information around risk-adjusted outcomes. He described the current thinking about the Quality Workgroup report, and asked for advice and comments from the group.
The participants discussed possible approaches to the topic of risk-adjusted outcomes. Dr. Lumpkin posited that the Committee could frame the discussion by deciding that the most important issue to address in health information as it pertains to quality is improving the system of obtaining risk-adjusted outcomes. He proposed that this emphasis might provide a leverage point for the Committee to have an impact on quality. Furthermore, providing consumers with information of this kind could strengthen the business imperative to improve health care quality.
Staff members noted the potential synergy of such an initiative with several HHS initiatives. Ms. Greenberg pointed out that the Committee has to address both health care quality and health quality, and she noted the relevance of the determinants of health model that was part of the report on 21st century health statistics.
Mr. Scanlon urged that the Workgroup close out the past phase (findings from the testimony received to date) and not try to use its report to lay the conceptual groundwork for the next phase of its work except to identify themes that can stimulate discussion about the next phase. Dr. Sondik expressed skepticism that risk adjustment is the right approach and urged the Workgroup to look at the AHRQ quality report.
Dr. Lumpkin proposed that the Workgroup look at the adequacy of the science of risk adjustment as well as the accessibility of data for that purpose. Dr. Sondik stressed the need to acknowledge the limited state of the art, including the lack of appropriate data.
The March agenda will be decided in a conference call.
The group agreed that this retreat had been beneficial, and that the next one should be in the summer of 2004, possibly late July.
Members will be polled after the January meeting to determine new dates for the September and November meetings, as Dr. Lumpkin is not available for those currently scheduled.
Dr. Lumpkin then adjourned the meeting.
I hereby certify that, to the best of my knowledge, the foregoing meeting summary is accurate and complete.
/s/ John R. Lumpkin, M.D. 3-01-2004
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Chair Date