Department of Health and Human Services

National Committee on Vital and Health Statistics

EXECUTIVE SUBCOMMITTEE RETREAT

August 6, 2004

The Robert Wood Johnson Foundation
Princeton , NJ

Summary

The Executive Subcommittee of the National Committee on Vital and Health Statistics held a one-day retreat on August 6, 2004 at the headquarters of the Robert Wood Johnson Foundation in Princeton, NJ. The meeting was open to the public. Present:

Committee members

  • John R. Lumpkin, M.D., M.P.H., Chair
  • Jeffrey Blair, M.B.A.
  • Simon P. Cohn, M.D., M.P.H., FACP
  • Robert W. Hungate
  • Vickie Mays, Ph.D.
  • Mark A. Rothstein, J.D.

Staff and liaisons

  • Marjorie Greenberg, NCHS/CDC, Executive Secretary
  • James Scanlon, ASPE, Executive Staff Director
  • Judith Berek, CMS liaison
  • Ed Sondik, Ph.D., NCHS liaison
  • Steve Steindel, Ph.D., CDC liaison
  • Aldonna Robbins, NCHS Board of Scientific Counselors liaison

Others

  • Debbie Jackson, NCHS
  • Jackie Adler, NCHS
  • Anna Poker, AHRQ
  • Audrey Burwell, OMH
  • Maria Friedman, CMS
  • David Brailer, M.D., National Coordinator on Health Information Technology
  • Kathleen Fyffe, OCR (afternoon, by telephone)

—SUMMARY—

The NCVHS Executive Subcommittee, lead staff and liaisons held a one-day retreat in Princeton, NJ, for the following purposes:

  • Strategic planning to address upcoming issues
  • Coordinating with the Office of the National Coordinator on Health Information Technology
  • Coordinating with NCHS Board of Scientific Counselors
  • Reviewing subcommittee and workgroup accomplishments in 2004 and plans for 2005
  • Planning forthcoming full Committee meetings

ACTIONS

  1. The Subcommittee agreed with Dr. Brailer that privacy issues and Regional Health Information Organizations (RHIOs) are priority topics for NCVHS hearings to support his Office’s work.
  2. Three joint activities were identified for proposal to the NCHS Board of Scientific Counselors: a joint meeting of the full bodies in early 2006; a joint meeting of their executive subcommittees in 2005; and a joint hearing on quality of life measurement in 2004-2005.
  3. The Subcommittee agreed to seek key contact persons at the Census Bureau, EPA, and the Department of Homeland Security. Ms. Jackson and Mr. Scanlon were asked to draft letters to the directors, for final action by Dr. Lumpkin.
  4. Subcommittee members agreed that the Committee will publish a biennial report covering major NCVHS activities and accomplishments in 2003 and 2004.
  5. It was suggested that for the annual report, subcommittees and workgroups identify items for a recommended HHS research agenda. Chairs and lead staff will be reminded of this request.

Strategic Planning to Address Upcoming Issues

Setting the stage for the day’s discussions, Dr. Lumpkin reflected on the extraordinary past year, in which significant national policies and programs were created on foundations laid by NCVHS recommendations, notably on the NHII. He welcomed the new National Coordinator on Health Information Technology, Dr. David Brailer, who took part in this meeting. After highlighting key characteristics of the current environment and the Committee’s contributions, he observed that the Committee’s challenge as it plans its future work is determining where it can add value to national initiatives. Mr. Scanlon and Ms. Greenberg added their comments on the accomplishments in the past year.

Status Report on ePrescribing

Dr. Cohn briefed the group on the Standards Subcommittee’s fast-paced work on e-prescribing, aimed at recommending standards for the Medicare Modernization Act (MMA). Through extensive hearings, the Subcommittee has listened to stakeholders and identified what is in use today and where the limitations and gaps are. On that basis, it expects to submit a set of recommended “foundational standards” to the Committee for approval in September, with further “fine-tuning” by March and a comment on an NPRM (if there is one) in the interim. Using a car analogy, Dr. Cohn said “this is a good basic vehicle,” but it will need more work to make it really usable as well as consistent with requirements such as patient safety and quality.

Dr. Lumpkin praised the Subcommittee and staff for their flexibility and hard work in rapidly developing recommendations that will enhance the ability to do e-prescribing. The group briefly discussed related issues including privacy, decision support, and identification. Mr. Blair reported that the near-term goal is to have standards to permit a demonstration project by January 1, 2006. No work has yet been done on prioritizing the recommendations but this may happen later, possibly based on a “low-hanging fruit” principle. Ms. Friedman noted the “unprecedented cooperation from the industry” in this process. Dr. Steindel said the Subcommittee assumes that people will use these standards outside of the MMA; also, it is building on its past recommendations.

Health Disparities, Health Quality and Population Health

Dr. Lumpkin then shifted the discussion focus to the broad population health context for the Committee’s work, as outlined in the NCVHS vision for 21st century health statistics. Noting the Committee’s traditional efforts to bridge its “left brain and right brain,” he asked Dr. Mays and Mr. Hungate to comment on activities around health disparities and quality.

Dr. Mays reported that the quality-related activities underway both inside and beyond the Committee have influenced the Populations Subcommittee to frame race and ethnicity data issues as part of the push for quality health care. It is increasingly accepted that race and ethnicity data are needed to provide culturally competent, quality care; the questions concern when, where, and how to collect the data. This emphasis, she said, will lead to a stronger relationship between the Populations Subcommittee, the Quality Workgroup and the Subcommittee on Privacy and Confidentiality.

Mr. Hungate agreed with Dr. Mays’ remarks and commented on the challenges of aligning individual and population measurement and moving into an era of Internet-enabled information systems. He added that cost effectiveness is another variable that needs to be integrated. Quality Workgroup lead staffer Anna Poker pointed out that this dual perspective encompasses the AHRQ national reports on health care quality and on disparities. She suggested placing the highest priority on quality care for the high- chronicity population.

Dr. Deering and Dr. Steindel described developments at NCI and CDC that are expected to contribute to population-based data gathering for quality improvement. NIH is working on clinical trial data standards that will expedite bench to bedside translation; and there are bridges between NCI and CDC cancer registries. Dr. Sondik observed that he sees an unprecedented spirit of cooperation among people in different fields and agencies. The work in cancer was identified as a model for other areas, though Dr. Mays pointed out the unparalleled amount of resources available for cancer work.

She proposed a principle of “No Population Left Behind” and noted the dearth of information technology for some population groups, notably American Indians and Alaska Natives. She cautioned against assuming a level of resources that in many settings does not exist, and she urged the Committee to think about how to ensure that all groups can participate in what is being created.

Continuing this theme, Ms. Greenberg observed that the Committee’s population health mission means it is committed to ensuring that information technology benefits everyone and not just “the haves.” She praised the current work on e-prescribing and the potential evolution of the EHR, but noted that “the EHR is still only health care,” which is only one of the determinants of health. One role of NCVHS is to keep this broader perspective on health and its influences in front of people. (This theme was echoed throughout the day.) She quoted former NCVHS member Dr. Dan Friedman, co-author of the Vision for 21st Century Health Statistics: “Despite the tsunami of recent public and private sector and NHII-related initiatives, these activities to date fail to confront one critical health information need: What is the information content needed by the U.S. to improve the U.S. population’s health?” Finally, she reminded the group that the “camera image” devised by former NCVHS members Lisa Iezzoni and Kathy Coltin provides a structure for considering the information needed at every level.

Dr. Brailer commented on the importance of information on cultural competency within prevention and care delivery and encouraged the Committee to think about an information model for understanding “the cultural modulators of outcome” and “the dimensions of culturally competent care.” He noted the gulf between those in this “cultural” field and those working on data issues, and wondered “how we merge those two ways of thinking” and determine ways of measuring these factors. Dr. Steindel observed that these behavioral and cultural variations are at the heart of what Dr. Gerberding currently calls “marketing” (for lack of a better term) in the CDC reorganization.

Mr. Blair urged the Committee to spend time on the many aspects of “the broader context of health,” with the aim of improving the tools for gathering information on them and then analyzing it.

Mr. Rothstein commented on his hope that the Subcommittee on Privacy and Confidentiality would be able next year to move from having its agenda set by HIPAA privacy rule responsibilities, in order to work on other important topics such as the privacy issues for different population groups. He noted the variations among different age groups with respect to privacy concerns.

Dr. Sondik called attention to an unintended consequence of HIPAA: concerns among states about the privacy implications of national-level uses of state data such as the National Death Index. Two other privacy issues were mentioned: the 9/11 Report recommendations for more secure driver’s licenses and birth certificates, and the growing incidence of identity theft.

Returning to process questions, Dr. Cohn asserted that while the Committee needs high-level visions, “we are only effective if we get relatively specific at the end.” In this spirit, Dr. Sondik proposed the idea of formulating a minimum data set for the broad factors discussed above.

Dr. Mays said she thought the Subcommittee on Populations should take time to work on “a vision and a product.” The Subcommittee also may propose a set of population-related questions for NCVHS subgroups to consider when developing recommendations on a given topic. She added that the Subcommittee plans to activate the mental health part of its portfolio in the coming year. Mr. Scanlon encouraged the Subcommittee on Populations to work on an analytic model the Committee could use to integrate its activities and operationalize its population health mission. He drew a parallel with the 9/11 Commission’s critique of U.S. intelligence and the need for “more nimble analytic integration” in place of “inflexible but extensive data collection systems.”

Dr. Lumpkin highlighted several possible NCVHS activities that emerged from the foregoing discussion:

  • proposing HHS research agendas, such as on the measurement of cultural competence in health care
  • hearings on issues about and gaps in the vital records system
  • development of a model for integrating clinical and non-clinical data measurements of health determinants

The group revisited these topics in a later discussion of integration and coordination. Dr. Lumpkin said he thought the Committee was doing better at coordination than it had in the past. He encouraged the Populations Subcommittee to help keep disparities issues in front of the Committee, and the Executive Subcommittee to help all NCVHS groups frame their issues in a way that permits “right brain-left brain interaction.”

NCVHS Coordination with DHHS Efforts with the Office of the National Coordinator on Health Information Technology

Speaking on day 90 of his tenure at HHS, Dr. Brailer gave an overview of his Office’s activities and plans. His first 89 days were spent developing a strategic framework and orchestrating a day-long presentation and discussion at the July national NHII meeting. He expects to “stay in the sprint mode” until at least February, focusing on 1) the tasks involved in creating the Office (budgets, staffing, etc.) and 2) programmatic activity around some of the 12 strategies announced in July.

Initially, the HIT Office will move on finance-related areas, including steps to create a positive environment for public and private investment in EHR adoption. It will work on market institutions that it regards as essential, such as certification, “to balance the playing field between small physicians and very large technology sellers.” The aims are to guide finance and reduce risk in “an agent-intermediated market.” The Office will also work on forming Regional Health Information Organizations (RHIOs). The goal is for every American to have a local, regional or state entity protecting their data and making it available as appropriate. A set of criteria will determine that the RHIOs function consistently and interoperably, while at the same time they reflect their distinct environments. RHIOs are already forming, and AHRQ is releasing five contracts for state entities. Finally, the Office will work on the National Health Information Network, the technical platform for interoperable EHRs that sits on the Internet and interoperationalizes standards. It is envisioned as a privately capitalized, privately operated and publicly overseen utility.

The Office does not expect to take programmatic action within the first six months on the personal health record and surveillance. The full implementation plan after February will be linked to budget, staffing, and so on. Dr. Brailer stressed that his Office will function as a coordinator and catalyst; the agencies will do the implementation, working through existing or new private sector platforms. The overarching (“somewhat contradictory”) goals are 1) to promote the rapid adoption of health information technologies across the landscape and 2) to avoid their becoming proprietary vehicles for harming care delivery. Having given this overview, he invited a discussion about “the interface with NCVHS.”

Generally, Subcommittee members sought to clarify specific aspects of the HIT vision and to explore potential NCVHS contributions. Their first questions concerned how data directories would be maintained and by whom, the criteria for moving information, and access controls. The discussion then shifted to potential uses of the system, as it evolves, to support health care quality and generate information about health status. Dr. Brailer stressed that the system is “not about IT; we are talking about reforming the health care industry and building it around the consumer.” The goal is a robust, performance-based market; to accomplish this, the infrastructure must be built in advance of the accountability.

Dr. Deering asked about the mechanisms for building the system around the consumer, and Dr. Brailer said that while this principle is central, it is difficult to make tangible. There is evidence that the most successful regional organizations have “significant consumer input at the governance level and at various working levels.” His Office plans to consult disease-specific consumer groups and “work backwards from what we are trying to achieve” to the consumer’s role.

Asked about handling privacy challenges, he said that HIPAA provides the statutory basis; his concern is balancing privacy and data movement and assuring the public that their data are safe and they are better off than under manual circumstances.

Another concern is how the RHIOs will operationalize privacy and confidentiality aspects of data sharing, and how to avoid replicating the same dialogue about this all around the U.S. To this list, Mr. Rothstein added that consumers have concerns about the potential capacity through EHRs to turn personal health data into a complete longitudinal record, without their having control over information sharing. Dr. Brailer described the system for establishing patient control used in his Santa Barbara, CA program, and Dr. Lumpkin observed that there are several models in existence. Dr. Brailer welcomed his suggestion that the Committee could highlight these models and provide advice to help regions on this matter.

To another question, he said his Office could also use the Committee’s help in refining the definition of a region. On that subject, he noted that 1) these are not federal geographic regions and 2) a person can operate within more than one region. Dr. Lumpkin suggested that the Committee also work with Dr. Brailer’s Office on prioritizing its issues and activities. Dr. Brailer asked about recasting the NHII Workgroup so it is more aligned with his program’s agenda. Dr. Lumpkin said that with its limited resources and full agenda, the Committee will need to think carefully and consult with HHS about where it can add the most value. They agreed on privacy issues and RHIOs as priority areas.

Dr. Brailer then described his Office’s communication and outreach plans to stakeholders around each strategy, including a “road show” in January or February 2005. He suggested that NCVHS might bring back testimony from regional entities.

Dr. Sondik talked with Dr. Brailer about the potential uses, over time, of this information system for understanding and improving health status. Dr. Brailer predicted a slow evolution toward this goal, and cautioned against both “the tyranny of perfection” and the health care system’s cynicism. Dr. Sondik predicted that the evolving system will be a good vehicle for injecting ideas about functioning into health care practice, toward a broader picture of how people are doing.

Coordination with NCHS Board of Scientific Counselors (BSC) Objectives

Dr. Mays, who represents NCVHS at BSC meetings, described the mechanisms for keeping the two bodies in touch with each other’s activities. The larger question, she said, is how they can most effectively work together. She proposed inviting all BSC members to an NCVHS meeting, to give them a sense of how the Committee operates.

Dr. Sondik explained his sense of the respective roles of the two bodies (with NCVHS having the broader policy and departmental perspectives) and where they complement each other and overlap. He proposed a joint hearing on quality of life measures, and later added that the 21st century health statistics vision is another joint area.

Dr. Robbins said the BSC, which is still getting started, would probably organize itself around specific data sets. She predicted that they would be ready for a joint meeting by Spring 2005. Ms. Greenberg encouraged timely planning for such a meeting, and Dr. Lumpkin suggested that a joint meeting be planned for early 2006. NCVHS will suggest to the BSC that the two groups’ executive subcommittees meet together in 2005.

Returning to Dr. Sondik’s suggestion about a hearing on quality of life measurement, the group also agreed to propose to the BSC a joint meeting on that topic in 2004-2005. Mr. Hungate noted that a CMS study on the health of seniors might generate relevant information.

NCVHS Operations

Contacts with Regional Health Administrators

The purpose of the discussion of this topic was to clarify the appropriate way of being in touch with Regional Health Administrators regarding NCVHS meetings in their areas. The nature of the contact may vary with the nature of the meeting, but in general, Mr. Scanlon explained, the idea is to notify regional directors so they are aware that NCVHS will be holding a meeting in their area. This is especially important when there may be press coverage, as these individuals represent HHS in their areas. Ms. Berek offered to help with contacts, as needed.

Coordination with Other Federal Agencies

After an extensive discussion of the objectives of coordinating with other federal agencies and which agencies have priority, the group agreed not to seek any additional liaisons but to seekkey contact persons at the Census Bureau, EPA, and the Department of Homeland Security. Ms. Jackson and Mr. Scanlon were asked to draft letters to the directors, for final action by Dr. Lumpkin. (The candidates from which the three agencies were chosen also included the Bureau of Labor Statistics, OSHA, the Department of Education, VA and DoD.) These contact persons will be the designated recipients of routine information about NCVHS meetings and actions. They are welcome to attend any meetings they wish, and are the persons NCVHS would contact about specific issues if their participation is needed in subcommittee/workgroup activities, on either a time-limited or more long-term basis.

2003-2004 Report

Subcommittee members agreed that the Committee will publish a Biannual report covering major NCVHS activities and accomplishments in 2003 and 2004. Ms. Greenberg explained that these reports provide a cross-cutting view of the Committee’s activities that is broader than the periodic reports to Congress on HIPAA implementation. Susan Kanaan will be contracted to write this report, working in consultation with subcommittee and workgroup chairs and full Committee leadership and staff.

Budget Issues

Mr. Scanlon reported that he expects that the Committee will have funding for FY2005 at roughly the same level as in 2004. He asked chairs to notify him of their requirements for hearings and special projects in the coming year.

Briefing: Impact of CDC Reorganization

Dr. Sondik spoke briefly and very positively about the impact of the CDC reorganization on health information and health statistics activities. NCHS has been moved to a cluster with the Informatics Center and the Center for Marketing. An executive board has been formed of the heads of the four clusters of centers. He encouraged the Committee to “watch us to be sure we continue to do our mission” as CDC continues to reorganize and shapes the mission of its constituent centers around new goals. He hailed CDC’s new emphasis on serving the public and its effort to be more intelligible and coherent to the outside world. He also praised the fact that the coordination center for health information services is in the center, reflecting Dr. Gerberding’s belief in the centrality of that function.

2004 Accomplishments, 2005 Plans

NHII Workgroup

The Workgroup has written a letter outlining future activities following from the July NHII Conference. Executive Subcommittee members agreed to defer action on the letter to the September full Committee meeting. It will then be posted on the Web, and because of the interest in the July meeting, the Committee’s mailing list will be notified of its posting. PowerPoints from conference breakout sessions have already been posted.

The Workgroup will hold a hearing in the Fall on the federal government’s role with respect to the personal health record. It plans another four or more hearings in 2005, and it will collaborate with other subcommittees/workgroups on hearings on topics of mutual interest (e.g., the Subcommittee on Privacy and Confidentiality hearing on patient control of personal health information).

Subcommittee on Standards and Security

The Subcommittee plans to host six or seven sets of hearings in 2005. Dr. Cohn thanked its staff for helping the Subcommittee be so effective.

Subcommittee on Privacy and Confidentiality

The Subcommittee plans the following hearings:

  • Security (September 21-22) (subsequently rescheduled for later in the fall)
  • e-prescribing (November 18-19)
  • Archival information and HIPAA impediments; state privacy law and death information
  • Patient identification
  • Patient-controlled limits on EHRs; limits on disclosure of third parties

Dr. Deering volunteered to help with the hearing on patient-controlled limits.

The Subcommittee will submit three letters for approval at the September full Committee meeting.

On general staffing issues, Ms. Berek suggested that Subcommittee chairs be as specific as possible about what, or whom, they want when asking liaisons for help in appointing staff.

Subcommittee on Populations

Staffing has improved for the Subcommittee. Staff and members have been divided into task groups to work on different topics. The Subcommittee will work on mental health statistics in the coming year, as well as with the Quality Workgroup on candidate recommendations of mutual interest. It will also work with the Subcommittee on Privacy and Confidentiality on confidentiality issues related to small populations, and will follow up on its letter to Dr. Alexander about the National Children’s Study.

The Commentary on race and ethnicity data for measuring and eliminating disparities reviewed at the June NCVHS meeting is ready for final dispensation by Dr. Lumpkin, who was asked to make a final decision on the document’s title. The Subcommittee is engaging a new writer to write a full report on this subject, which will be presented at the November NCVHS meeting.

Dr. Mays is identifying two experts to make a presentation to the full Committee in September on race, ethnicity and SEP. She predicted four to six Subcommittee hearings in 2005, at least one outside Washington, DC.

Quality Workgroup

The Workgroup plans three hearings:

  • on race and ethnicity data (Sept. 14, with the Subcommittee on Populations)
  • on quality of life
  • possibly on risk adjustment

Mr. Hungate expressed hope that someone from the Subcommittee on Standards and Security could participate in the September hearing. He expressed appreciation for Anna Poker, the new Quality Workgroup lead staff, and said they could use additional staff. It is likely that the VA central office will appoint someone.

At Mr. Hungate’s suggestion, the full Committee will be briefed on the CMS senior survey. Discussing the possibility of a hearing on risk adjustment, Dr. Lumpkin advised that the Workgroup hold a hearing to learn about and refine the topic before planning a session on it for the full Committee. Participants briefly discussed the relationship of the quality report card to quality improvement, an issue that Dr. Lumpkin said also might be refined and brought to the full Committee for discussion.

Research Agenda

Ms. Greenberg reopened the idea, discussed earlier, of the Committee’s articulating research agendas. She commented that while this is a valuable role for the Committee and one it has engaged in previously, it has not yielded appreciable results. She asserted that it would not be worthwhile to work on such recommendations without a “home” for them and a strategy for moving the agendas forward. She and others cited the following recommendations that have not received attention, or even response, from the Department:

  • functional status (reiterated in the recent report on quality)
  • the effectiveness and impact of HIPAA
  • PMRI terminologies
  • ICD-10
  • in CHI standards, the idea of an integrated core set and of mapping to it

Mr. Scanlon assured the group that all NCVHS recommendations are looked at and considered. If they are not responded to or acted on, it may be because of a lack of resources, or because the necessary policy-making apparatus is not in place. “Sometimes these things just have to be communicated informally.”

Dr. Sondik stressed the critical importance of a personal contact with a personal interest in the issue to move a research recommendation forward, and Dr. Deering and Dr. Mays mentioned possible ways to use NIH mechanisms and contacts.

It was suggested that for the annual report, subcommittees and workgroups identify items for the research agenda. Chairs and lead staff will be reminded of this request.

2004-2005 Full NCVHS Meeting Agendas

The following agenda topics were either suggested or agreed upon:

September meeting

  • Briefing on race, ethnicity and SEP
  • Three letters from the Subcommittee on Privacy and Confidentiality
  • NHII letter
  • Subcommittee on Standards and Security report on e-prescribing
  • NIH Roadmap

November meeting

  • Briefing on BSC meeting: Drs. Robbins and Mays
  • Clinical trial research infrastructure, and CABG

March 2005 meeting

  • · NCHS update: Dr. Sondik

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. 10/08/04

Chair Date