Marriott Metro Center, Washington, DC
The NCVHS Executive Subcommittee, key staff members, and Department agency liaisons and representatives met on May 2-3, 2007 in Washington, DC to review the past year and plan for future priorities. A major theme in their discussions was how the Committee can more fully integrate its work and infuse it with the NCVHS population health mission, while also managing heavy workloads. Briefings from ASPE, CMS, NCHS and ONC provided context by highlighting the Department’s major priorities and plans for information policy. In addition, the respective chairs briefed the group on their subcommittee and workgroup plans, and the Executive Subcommittee outlined the June full Committee meeting and discussed the 2005-2006 NCVHS report.
The theme of consistently bringing the Committee’s mission, visions, and diverse expertise to bear on all its activities emerged early in the meeting and carried through to the end. In his introductory comments, Dr. Cohn talked about infusing the population health mission throughout the Committee’s work. Then, as the group reviewed the 2006 full Committee retreat, some noted the “disconnect” between the holistic, future-oriented perspective expressed there and in the vision documents, on the one hand, and the day-to-day realities imposed by demanding projects, on the other. In the course of the day, several ideas for both conceptual and operational integration were put forward (see list at end of this section).
To stimulate discussion, Mr. Reynolds and Mr. Blair offered graphics illustrating the overlaps among subgroup agendas. Mr. Reynolds pointed out that all members need to understand both infrastructure issues and population health and quality goals to ensure that all the necessary data content and privacy protections are built into the infrastructure as projects go forward. He called this “getting the vision into the now.” On the time pressures that challenge the Committee’s ability to be holistic, Mr. Rothstein noted that trust is the precondition for HIT adoption by providers and consumers, and the Committee has a very narrow window (about a year) to build the necessary privacy protections into the NHIN.
Mr. Scanlon stressed that the broad, integrative perspective NCVHS brings to issues is built into its makeup, and the Department values this breadth. He agreed that it is also essential to stay nimble, because “the world is changing.” Ms. Greenberg noted that the Committee can choose from several forms of involvement in issues, including visioning, identifying base requirements, promoting nationwide adoption and acceptance, and/or evaluation. She encouraged the Committee to continue to draw on the thinking from the June 2006 retreat.
Mr. Reynolds reminded the group that for all its talk of integration, the Committee “flies in, meets, makes decisions and leaves in buckets,” as illustrated in the graphics. The question, then, is how to move these buckets into a broader population health frame of reference. The group discussed the value of working together as a full Committee to facilitate cross-fertilization, and it was noted that full Committee retreats serve this purpose, as well.
As they looked at questions of effectiveness, participants also noted the need to build influence through other entities helping to shape the field. The main focus was the Committee’s relationship to AHIC as that body shifts into a new form over the next 18 months (see ONC summary below). Mr. Reynolds also mentioned the notion of “endorsement collateral”: citing the Committee’s privacy recommendations as an example, he said the Committee’s recommendations often can and should serve as a resource for the entire field.
The group took time in the context of Dr. Steinwach’s report on the Subcommittee on Populations to further consider how to integrate the work on population health into the full Committee’s activities, and why doing so seems difficult. There was agreement that the solution lies in more intentionally infusing this perspective.
The group talked in two contexts about approaches to the non-health-care, or secondary, uses of clinical information—first, in relation to the integration theme, and then in terms of a special project for ONC (described below). There was agreement that the term secondary use makes misleading distinctions between the various uses of clinical data, all of which are “just uses.” It was proposed that the Committee try to educate people to a more comprehensive view. In this regard, the diversity of important data sources was also noted. The conversation led to questions about what model best locates the individual as part of society and establishes the frame beyond health care. One idea was to revisit the notion of a minimum data set, for possible updating.
Suggested Process Improvements
Several ideas for enhancing education, communication, efficiency and cross-fertilization surfaced during the meeting:
The chairs briefly described their groups’ near-term plans.
The Subcommittee on Standards and Security is working on National Provider Identifier (NPI) implementation, changes to the security rule, transition to ICD-10 code sets, and streamlining HIPAA. Its chief focus in the near future is the 5010, as the next version of HIPAA transactions, with one hearing planned. Mr. Reynolds stressed the need for the full Committee to be informed about this subject before the Subcommittee presents letters for approval. Ms. Greenberg said Committee conference calls and educational materials will also be made available to the public, to enhance public education on the subject.
The Subcommittee on Privacy and Confidentiality will present two letters at the June meeting: one on the need to harmonize HIPAA and the Family Educational Rights and Privacy Act (FERPA), building on a 2004 letter; and the other proposing a philosophy for the extension of HIPAA coverage through either amendment or new legislation. It also is preparing to bring to the full Committee the challenging issue of individual control over electronic health information content. Mr. Rothstein asserted that this is the most important issue surrounding the NHIN, and the group agreed on the importance of serving as a forum for constructive debate about it.
The Subcommittee on Populations is finalizing a letter on data linkages and also working on follow-up to the surge capacity hearing. Starting this Fall, it plans to revisit the vision for 21st century health statistics, in consultation with co-author Dr. Dan Friedman, to assess progress and determine what is needed to update it. In the light of the discussion of integration, Dr. Steinwachs wondered what Population Subcommittee activities would be most synergistic with the full Committee’s core concerns. He said he’d like to collaborate with the Privacy Subcommittee on data linkages. Dr. Sondik noted that several Secretarial priorities lie in the Population Subcommittee’s domain.
For the Quality Workgroup, Dr. Carr observed that the tempo and landscape of quality groups and initiatives have accelerated over the last year or two, and the Workgroup has been seeking the best ways to add value within the scope of its capacities. A hearing is being planned for June 19 on inpatient data from administrative, electronic and hybrid sources. The hearing also will look at the current state of quality improvement and reporting and at risk adjustment. AHRQ has expressed interest in the findings from this study.
On the NHII Workgroup, Dr. Cohn pointed out that recent work on the information infrastructure has occurred through the NHIN functional requirements project. Given the forthcoming project on uses of clinical data, the NHII Workgroup probably will not have another project of its own until late 2007. At that point, the interfaces among networks and among the three NHII dimensions were flagged as a ripe area for an NCVHS contribution. Other suggestions for future attention included assessing the maturity of NHII components; looking at the landscape, capability and trends for health information exchanges (HIEs); and looking at the constraints on information exchange related to intellectual property.
Mr. Scanlon reviewed the Secretary’s nine priorities, with particular attention to the data, HIT and information policy issues they entail. These are the areas on which the Secretary is spending personal time:
Members raised several topics for discussion. One concerned the price aspect of value: how it can be assessed, how to inform consumers about value, and how to encourage the public to use the information. Participants also discussed the extent to which the current emphasis on bioterrorism and pandemic preparedness is undercutting traditional public health activities and goals. This topic linked to another theme of the meeting, the serious underfunding of the information infrastructure for population health (see discussion with Dr. Sondik, below).
Ms. Trudel noted that CMS priorities are driven by and linked to those of the Secretary.
Regarding legislation, Mr. Scanlon said the 110th Congress is expected to introduce HIT bills this Fall. One on streamlining HIPAA administrative simplification is likely to involve a role for NCVHS.
Dr. Sondik reported on the threats to the nation’s vital statistics and surveys resulting from NCHS budgets that have been flat, or worse, since 2002. Adjusted for inflation, this amounts to growing funding cuts. So far, the Center has managed to sustain key activities, though NCHS is already paying states less for the vital statistics they collect. The impact of underfunding, if it is not corrected, will start to be very serious in fiscal 2009, when it will not be possible to do everything done in the past. Dr. Sondik noted that this crisis also presents an opportunity to rethink the surveys. Cuts in sample sizes of the National Health Interview Survey (HIS) are one option, but this would undermine the ability to estimate subgroups. Further, due to past integration efforts, the HIS is the core of all the Department’s data collection activities. Stopping the redesign of the National Hospital Discharge Survey is another option, along with simplifying NHANES. A major concern is that the Center is not doing the development it should, nor supporting the re-engineering of the statistical system, staff training, or extramural research.
The National Center is asking for advice from the Committee and its Board of Scientific Counselors about the tradeoffs and choices it is facing. Dr. Cain, the BSC’s Executive Secretary, said that Board has already put forward a broad principle: that NCHS should emphasize maintaining the quality of whatever work it continues, rather than “whittling away.” The BSC is preparing letters to the Secretary and Dr. Gerberding that it will share with the Committee in hopes that the two bodies can work together to raise awareness of this problem. The full Committee will probably be asked to take action on a letter at its June meeting.
Mr. Scanlon pointed out that all federal agencies except the Department of Defense are affected by tight or shrinking budgets in the same way that NCHS is. The participants agreed that “it’s time for creative thinking.” Mr. Scanlon advised that the thinking about new approaches be guided by the Secretary’s priorities.
This session focused on opportunities for cooperation and collaboration between NCVHS and ONC, and perspectives on the impending privatization of AHIC. In his briefing, Dr. Kolodner said he is continuing to execute what Dr. Brailer laid out. Turning quickly to the topic of privacy, he said he is stressing the development of “rigorous” policies for privacy and security, given that new privacy legislation is unlikely in the near future. The goal is to protect individual rights in arenas not covered by HIPAA, such as HIEs and RHIOs, to ensure that technology does not dictate policy. To that end, the next set of NHIN contracts (to be issued in July or August) will include privacy requirements. ONC also is fostering a discussion among states about the variations in state privacy law and policy.
Dr. Kolodner reviewed the background and status of ONC initiatives. Noting his Office’s important coordination functions, he described the work with other federal agencies through the Policy Council and with AHIC. AHIC will transition to the private sector by December 2008 and the new entity will exercise governance over HIT activity. The idea is to create an entity—possibly a “consensus organization” like the National Quality Forum—that encompasses all health care stakeholders, with strong representation from the consumer arena and domination by no sector. Yet to be determined are the nature of the entity, the federal role, the financial underpinnings, governance, and other matters. Three contracts have been let to develop ideas and models for this entity; the transition will begin in January 2008.
In their comments and questions, Subcommittee members and staff talked with Dr. Kolodner about guidance to contractors about complicated privacy issues; coordination among the various ONC projects; the idea of ONC serving as a clearinghouse for information on HIE funding from all sources; the NCVHS role with respect to ONC and AHIC; the potential to use the NHIN for research; and collaboration to promote the terminology and classification agenda. On privacy, the business case and other matters, he said ONC is fostering “a learning laboratory across the US” and encouraging communities to develop solutions and models that others can learn from. He stressed that ONC will continue to consult the Committee about privacy and other matters. Kathleen Fyffe, who accompanied him to the meeting, will be working on national and international coordination for ONC.
Finally, the group discussed a new project ONC has asked the Committee to undertake, to develop actionable recommendations on a high-level framework for secondary uses of clinical data, with a focus on the quality use case. Dr. Cohn will chair an ad hoc group, with Dr. Carr and Mr. Reynolds as co-Vice Chairs. The project has an October deadline and will probably involve public hearings to elicit guidance from the wider community. ONC will provide additional funding and staffing for this project.
The Subcommittee outlined the agenda for the June meeting and agreed that the 2005-2006 report would be presented to the full Committee at the September meeting after being vetted by the Executive Subcommittee.
Finally, the group talked about how to improve the look and distribution of NCVHS letters and reports. They reviewed the idea of expanding the use of the NCVHS listserv. While it is not appropriate to “push” things to Congress, it would be appropriate to send relevant documents to the chairs of AHIC committees. Someone suggested publicizing the listserv more actively, including providing a way to sign up for it on the Website.
Graphic design and “packaging” were the other factor considered, with agreement that good design can increase interest in a document. The Subcommittee decided that the June 2006 privacy letter and the NHIN functional requirements report should be converted to a well-designed PDF format for the Website, so they are more consistent with other major NCVHS documents.
I hereby certify that, to the best of my knowledge, the foregoing summary is accurate and complete.
/s/
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Chair Date