Department of Health and Human Services
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
September 8-9, 2005
National Center for Health Statistics Headquarters
The National Committee on Vital and Health Statistics was convened on September 8 and 9, 2005 at NCHS Headquarters in Hyattsville, MD. The meeting was open to the public. Present:
Simon P. Cohn, M.D., M.P.H., FACP, Chair
Jeffrey Blair, M.B.A.
Justine M.Carr, M.D.
John P. Houston, J.D.
Stanley M. Huff, M.D.
Robert W. Hungate
A. Russell Localio, Esq., M.A., M.P.H., M.S.
Carol J. McCall, F.S.A., M.A.A.A.
Mark A. Rothstein, J.D.
Donald M. Steinwachs, Ph.D.
C. Eugene Steuerle, Ph.D.
Paul Tang, M.D.
Kevin C. Vigilante, M.D., M.P.H.
Judith Warren, Ph.D, R.N.
William J. Scanlon, Ph.D.
Staff and liaisons
Marjorie Greenberg, NCHS/CDC, Executive Secretary
Dale Hitchcock, ASPE, for James Scanlon, Executive Staff Director
Maya Bernstein, J.D., ASPE
Audrey Burwell, OMH
Virginia Cain, NIH liaison
Mary Jo Deering, Ph.D., NIH
J. Michael Fitzmaurice, Ph.D., AHRQ liaison
Wanda Govan-Jenkins, NCHS
Debbie Jackson, NCHS
Katherine Jones, NCHS
Eduardo Ortiz, VA
Donna Pickett, NCHS
Anna Poker, AHRQ
Linda Sanchez for Susan McAndrew, OCR
Steve Steindel, Ph.D., CDC liaison
Maria Friedman, D.B.A., CMS
June O’Neill, Ph.D., BSC Liaison
Edward Sondik, Ph.D., NCHS Liaison
Karen Trudel, CMS Liaison
David Lansky, Ph.D., Markle Foundation
Ernest Moy, M.D., AHRQ
Dan Rode, AHIMA
James Ferguson Kaiser Permanente
Linda Straler, OCR
Bill Alfano, BlueCross BlueShield Assn. (BCBS)
Eric King, MedTech
Marilyn Luke, AHIP
Frank Kyle, Amer. Dental Assn.
Arthur Ciarkowski, FDA
Michael DeCarlo, BCBS
Carol Magoffin, CAN Corp.
Marianna Bledsoe, NIH
Brenda Gleason, Informed Decisions
- The Committee approved the 2003-2004 NCVHS Report.
- The Committee approved the Seventh Report to Congress on HIPAA implementation.
- The Committee passed a motion to send Mr. Scanlon a letter congratulating him on his promotion, thanking him for his service to the Committee and looking forward to a continued relationship.
- The Committee approved a letter report to the Secretary on PHRs.
This meeting, which was held at NCHS headquarters in Hyattsville, MD, featured the customary status reports from OCR and the Data Council as well as presentations on personal health records (PHRs) and the AHRQ reports on quality and health disparities. The Committee spent a considerable amount of time working on a letter report on PHRs, resulting in a document that is posted on the Committee’s Website. Hurricane Katrina and its aftermath provided a backdrop for the meeting and stimulated a good deal of discussion about the issues the disaster, its effects, and the relief efforts raise for health information policy.
Personal Health Record (PHR) Systems—David Lansky, Ph.D., Markle Foundation
Dr. Lansky urged the Committee to think of the PHR as a pivotal instrument for addressing the health care “design objectives” articulated by the IOM. The critical one in this context is the patient as a source of control. He described the variety of types of PHRs and PHR systems, noting that the defining attribute of PHRs is personal control of health information. Currently, patients have to talk to many information sources to get their health information, and non-standardized information management options are proliferating. There is no “uniform thing out there called a PHR,” but rather a plethora of unintegrated good ideas. There is an opportunity now, Dr. Lansky said, to “step into the flow and introduce some structure.”
He reported survey findings about public attitudes to PHRs. Respondents show considerable interest in the benefits available through PHRs. However, 91 percent of respondents are very concerned about privacy and security for their health information. He then reviewed the current status of the PHR and EHR “ecosystem” (i.e., the environment in which information sources and services are emerging). Adoption is slow, and the infrastructure for developing standards and harmonization mechanisms is not in place and will probably take 2 to 5 years. Among product approaches, portals offered by large provider organizations are the most common. They have limited patient-sourced data, portability, and patient control. Dr. Lansky described a number of market accelerators and barriers to PHR adoption. He noted that in surveys, people are generally unaware of but receptive to the value of PHR services, and they do want convenient access to and control over their health information. They also want to work with their doctors to acquire the information.
Turning to policy issues, he discussed the reasons why a federal role is needed in this arena and the findings from interviews with federal officials. He then reviewed several emerging privacy questions that are not adequately addressed under HIPAA and must be revisited. Finally, he commented on the Medicare role, CMS interest in PHRs, and the fact that the prescription drug benefit program may be a chance to jumpstart attention to managing personal health information. He noted that all parties will benefit from a “roadmap” that includes better understanding of the ecosystem, including accelerators and barriers. Finally, he mentioned seven policy actions recommended by Connecting for Health.
NHII Workgroup Letter on PHRs
On day one, the Committee extensively discussed a draft letter report to the Secretary on personal health records, drafted by the NHII Workgroup, which conveys findings and recommendations based on six public hearings. Following the discussion, the NHII Workgroup revised the letter report, and it was presented and approved with minor revisions the following day.
Update from the Department
- Office for Civil Rights—Ms. Sanchez
- Data Council—Mr. Hitchcock
See the summary below for notes on these brief presentations.
The Committee approved the 2003-2004 NCVHS Report and the Seventh Report to Congress on HIPAA implementation.
AHRQ Reports on Health Disparities and Quality—Ernest Moy, M.D., M.P.H.
Dr. Moy presented an overview of the two annual AHRQ reports and previewed the 2005 report and plans for future ones. The reports focus primarily on national trends, with Congress as the primary audience. AHRQ regards the two as paired; they present related snapshots using the same measures of quality of care. The Disparities Report also looks at access. Together they support the tracking of improvement or lack of improvement in quality and disparities against a baseline. A secondary function of the reports is to call attention to information gaps.
For the 2005 reports, AHRQ adopted core report measures developed by an Interagency Workgroup. The 46 quality measures and 13 access measures will be the core of the reports from now on, with information on 250 indices still available in the appendices. Another new feature is a crosswalk between the conditions around which the report is organized and patient-oriented categories of care. AHRQ also now provides composite measures, and will do so increasingly in the future. Dr. Moy reported some of the preliminary findings for 2005, noting that for quality of care, areas where more attention is being paid (e.g., patient safety) are showing faster improvement. Health disparities are still pervasive for lower SES groups and minority groups compared to higher income individuals and whites. However, more measures are headed in the direction of reducing or eliminating disparities than are headed in the opposite direction. There are still many information gaps.
Future directed activities include a major initiative to improve the inputs into the reports in three ways: filling identified measurement gaps, making sure the right health conditions are being covered, and tapping into new and innovative data sources.
Other Committee Business
- Subcommittee and Workgroup Reports
- Future meetings
Because of the unusual ratio of presentations to internal discussion in this meeting, Dr. Cohn asked members to share their views on the optimal mixture of these elements in future meetings. Generally, they expressed enthusiasm about minimizing presentations and having ample opportunity to learn about and discuss the topics and work products on which individual subcommittees and workgroups are working. See the summary below for notes on this discussion and the remaining agenda items.
Call to Order, Welcome, Introductions, Review of Agenda—Dr. Cohn
This meeting was held at the NCHS headquarters in Hyattsville, MD because meeting space in the HHS Building was preempted as a command center for the response to Hurricane Katrina. Dr. Cohn called the meeting to order, thanked Ms. Greenberg and her staff for their special efforts to relocate and host the meeting, and asked all present to introduce themselves. Members identified no conflicts of interest on any of the issues on the agenda.
Dr. Cohn commented on the accelerated activity underway to carry out the HHS health IT strategy. The NCVHS leadership has been working on how best to support the Department in this environment, both in Executive Subcommittee discussions and in conversations with the Secretary and Dr. Brailer. Dr. Cohn congratulated Jim Scanlon on his appointment as Assistant Secretary for Planning and Evaluation, Science and Data Policy. He announced that the Executive Subcommittee had approved the appointment of Dr. Carr as NCVHS liaison to the AHRQ National Advisory Committee, and that he had appointed Ms. McCall as Vice Chair of the Quality Workgroup.
Personal Health Records (PHR) Systems—David Lansky, Ph.D., Markle Foundation
Dr. Lansky began by saying that he, along with many others, was involved in efforts to apply the health IT lessons of the last ten years to improving emergency response in the future. The work on PHRs is finding a new forum because of the Katrina crisis, which dramatized the lack of infrastructure and capacity to move people’s health records in a disaster. He praised the Committee’s draft letter to the Secretary on the PHR (see below) and its other efforts to move this agenda forward.
He then presented an overview of PHR trends and policy issues, starting with a review of the six IOM “aims” for U.S. health care and the IOM “design rules.” The IOM has stressed the key role of patients, consumers, families and caregivers in health care service delivery. Six of its ten design rules are patient-centered. The critical one in this context is the patient as a source of control. Dr. Lansky urged the Committee to think of the PHR as a pivotal instrument for addressing the design objectives articulated by the IOM. He reviewed the potential benefits of a PHR and noted that they are already available to patients in diverse ways, including as EHR portals in some health care organizations. The available options represent a “spectrum of connectedness” between the patient and provider. Currently, patients have to talk to many information sources to get their health information, and non-standardized information management options are proliferating. There is no “uniform thing out there called a PHR,” but rather a plethora of unintegrated good ideas. There is an opportunity, Dr. Lansky said, to “step into the flow and introduce some structure.”
Surveys show that people—especially those with chronic illness and caregivers— like the services in PHRs, and survey respondents show considerable interest in the benefits available through PHRs. However, they express concern in response to abstractions such as “personal health record” and “online medical record.” 91 percent of respondents are very concerned about privacy and security for their health information.
Dr. Lansky reviewed the attributes of PHRs, noting that the defining one is personal control of health information. Other attributes of a normative description include comprehensiveness across a lifetime and across all providers, accessibility, transparency, and interactivity. He then described the current status of the PHR and EHR “ecosystem” —i.e., the environment in which information sources and services are emerging. Adoption is slow, and the infrastructure for developing standards and harmonization mechanisms is not in place and will probably take 2 to 5 years. However, the “islands” of standardized electronic data that exist are an accelerator of PHRs. Another potentially positive factor is that patients rely heavily on their physicians as information sources, so their sponsorship of PHRs will spur adoption. In the current product environment, paper is the only available or practical means for many people. There are some 160 electronic products, with various forms of data-storage—desktop-based, Web-based or portable devices. Among product approaches, portals offered by large provider organizations are the most common. He noted that they have limited patient-sourced data, portability, and patient control. Other approaches include independent, personal tools (which have a problematic business model) and transaction-driven tools (which begin with a defined data source and are being advanced by health plans).
The market accelerators for PHRs include the growing prevalence of a “digital lifestyle,” some demographic factors (e.g., youth and family caregiving), competitive pressures on institutions to provide PHRs, and public policy initiatives. The barriers include limited consumer demand, various physician barriers, and the fact that revenue sustainability has not yet been established. Returning to survey findings, Dr. Lansky noted that the public overestimates the adoption of EHRs by health care providers. Most people have not thought about their health record—for example, who owns it and alternatives to current forms of communication and record-keeping in health care. Age and health condition affect preferences for PHR media. The key messages from research on public attitudes are that people are generally unaware of but receptive to the value of these services, and they do want convenient access to and control over their health information. They want certain health care services and information available electronically, though fear is also associated with electronic availability; and they want to work with their doctors to acquire the information.
Turning to policy issues, Dr. Lansky said there are good reasons for a federal role in this arena. PHRs are a tool for achieving national public health goals, and many current federal activities will be strengthened by the use of PHRs. He noted the Committee’s contributions over the years in articulating why the government needs to show leadership in the NHII. None of the NHII objectives can be met without connectivity, and that requires federal leadership. The government has multiple roles related to health—provider, researcher, regulator, knowledge disseminator, and so on. It can stimulate a successful PHR program in a variety of ways; or it can be disruptive by failing to coordinate its own activities in this arena. Interviews with federal officials showed that they have questions about whether, and how, PHRs will advance agency objectives; what they will cost; the need for PHR standards; what is needed to protect privacy besides HIPAA; how to encourage, not stifle, innovation; and the possible need for regulation or certification. Dr. Lansky reviewed several emerging privacy questions that are not adequately addressed under HIPAA and must be revisited. Returning to the issue of personal control over health information, he reviewed the findings of a 2003 Markle Foundation survey and noted the philosophical and practical challenges involved in defining and applying this principle. For example, the exercise of personal control could jeopardize patient safety, putting two fundamental objectives at odds.
Finally, he commented on the Medicare role. Because that agency is interested in PHRs, and the prescription drug benefit program may be a chance to jumpstart attention to managing personal health information, CMS has sought advice from Markle. Markle has advised CMS to be a data supplier but not to become a vendor or distributor of PHRs, and it has pointed out that CMS can educate Americans about these issues. Dr. Lansky suggested that the Committee think about appropriate agency roles vis a vis PHRs.
On where the PHR policy framework goes from here, he observed that all parties will benefit from a “roadmap” that includes better understanding of the ecosystem, including accelerators and barriers. The next generation of innovations must be closely monitored to see what gets traction with professionals and patients. In addition, government should seed specific experiments and identify appropriate policy actions with respect to privacy, the structure for patient control, interoperability and standards, and public investment. Dr. Lansky mentioned seven specific policy actions recommended by Connecting for Health. They include the following: The Secretary and AHIC should designate a public-private panel to design and guide the deployment of PHR pilots. The medication environment should be used as the common area for an implementation focus. Awards should be created for state PHR pilots with Medicaid, so that the technologies become available to more vulnerable Americans with acute health needs. Finally, consideration should be given to a certification process.
In the discussion period, the group raised questions about the issues around aggregating data for secondary uses; the notion of decision support tools that help consumers make decisions about sharing personal data; what forces to combine to promote adoption by providers and patients; research priorities; and the risks related to secondary uses. Dr. Lansky stressed the importance of transparency and the need for multifaceted strategies to promote adoption, and he endorsed a set of research questions proposed by Dr. Fitzmaurice.
NHII Workgroup Letter on PHRs
The Committee then reviewed a draft letter report to the Secretary on personal health records, drafted by the NHII Workgroup, which conveys findings and recommendations based on six public hearings. The group extensively discussed a number of substantive issues associated with proposed recommendations in the areas of privacy, access control, secondary uses, consent, core/minimum data sets, and standardization. Finally, they talked briefly about how to phrase recommendations that are not directed at the Department (e.g., insurance companies and OPM) and about the need for dissemination strategies to ensure that they reach the intended audiences. In its breakout session, the NHII Workgroup revised the letter report based on this discussion, and the revised document was discussed on day two of this meeting (see below).
Update from the Department
- Office for Civil Rights—Ms. Sanchez
As of the end of August, OCR had received nearly 15,000 complaints and closed 68 percent of them. 231 cases have been referred to the Department of Justice. The allegation raised most frequently concerns the impermissible use or disclosure of protected health information, followed by inadequate safeguards. Complaints are most often filed against private health care practices, followed by hospitals.
Ms. Sanchez reported on a recent Katrina bulletin on the OCR Website, clarifying for covered entities issues related to disaster response. She noted that the privacy rule has a special provision for disclosures to disaster relief agencies. The Committee commended her office for issuing this clarification.
Mr. Houston reported that he and Ms. Chavez planned to meet to go over the statistics the Committee would like from OCR.
- Data Council—Mr. Hitchcock
Mr. Hitchcock reported that Mr. Scanlon was unable to be at this meeting because he is at the command center, in charge of daily briefings for senior HHS staff on hurricane responses.
On data policy, he said the Data Council is involved in budget reviews for FY07 and is working on better ways to collect, report and analyze race and ethnicity data. There are also data improvement initiatives related to prescription drug utilization and expenditure data. The Council is also looking for ways to reconcile differences between Departmental and Bureau of Census estimates on health insurance, as well as ways to collect better data from states on a number of topics. Ms. Bernstein has reactivated the Data Council’s privacy and confidentiality work group, and ASPE has started a study on best research and statistical confidentiality and privacy practices.
Dr. Steinwachs asked whether there was discussion in the Department about assessing the health consequences of Hurricane Katrina in order to learn for future events, and Mr. Hitchcock said he was sure this was happening. Dr. Steindel added that CDC is using its monitoring systems to look at these issues. Ms. Greenberg encouraged the Subcommittee on Populations to investigate this question further.
Mr. Rothstein reiterated a past request that the Committee’s Website post the Secretary’s responses to its letters, linked to the original letter. Ms. Greenberg said the staff would make it a high priority to find a workable approach to meeting this request.
Dr. Fitzmaurice commented on the struggles of individuals, physicians, pharmacies and others in New Orleans related to the loss of health information, notably prescriptions, and the efforts to remedy the situation.
- 2003-2004 Report
Having reviewed earlier drafts of the report and been sent the latest draft in advance, the Committee passed a motion approving the report.
- HIPAA Seventh Report to Congress
Similarly, the Committee approved the Seventh Report to Congress on HIPAA implementation.
The Committee then recessed into Workgroup and Subcommittee sessions, to reconvene the following day.
Letter to Mr. Scanlon
The Committee passed a motion to send Mr. Scanlon a letter congratulating him on his promotion, thanking him for his service to the Committee and looking forward to a continued relationship.
Review of Draft Letter Report
Dr. Cohn explained the NHII Workgroup’s revisions to the letter report on PHRs. After discussion of a few issues, the Committee passed a motion to approve the letter report, as revised. The contributions of staff members to the development of the document were acknowledged with appreciation.
AHRQ Reports on Health Disparities and Quality—Ernest Moy, M.D., M.P.H.
Dr. Moy presented an overview of the two annual AHRQ reports and previewed the 2005 report and plans for future ones. Initiated by a congressional mandate in PL 106-129, the reports focus primarily on national trends. The Disparities Report (DR) looks at health care in terms of racial and socioeconomic factors. AHRQ regards the reports as paired; they present related snapshots using the same measures of quality of care, and the DR also looks at access. Dr. Moy said he sees progress in society’s recognition that quality and disparities are interrelated, in terms of both the problems and the solutions. Congress is the primary audience for these reports, which support the tracking of improvement or lack of improvement in quality and disparities against a baseline. A secondary function of the reports is to call attention to information gaps. There is less information for state and local entities and for providers, but AHRQ makes all the tools and methods developed for these reports available on its Website so these entities can adopt the modalities of measurement if they wish and then compare to national benchmarks.
The reports cover four major domains of quality of care—effectiveness, safety, timeliness, and patient-centeredness. With respect to access to health care, they look at getting into the system (e.g., insurance), perceptions of care (e.g., patient-provider communication) and health care use. The agency’s philosophy is to develop good measures and then find the data to inform them. It has “tons and tons of data sets” from “tons and tons of data sources.”
For the 2005 reports (not yet released), AHRQ adopted a narrower measure set, called “core report measures.” The set was developed by an Interagency Workgroup, starting with 250 measures and narrowing down to the 46 quality measures and 13 access measures with the strongest evidence base. These will be the core of the reports from now on, with information on all 250 in the appendices. Another new feature is a crosswalk between the conditions around which the report is organized and patient-oriented categories of care (preventive services, acute services, and chronic disease management). New data have been added on a variety of conditions. AHRQ also now provides composite measures, which it was encouraged to do, with drill-down capability. Future reports will have more and more composite information, as well as summaries across the entire measure set.
The preliminary findings on quality of care for 2005 are that overall, quality continues to improve, at an annual rate of 2.8 percent. Areas where more attention is being paid (e.g., patient safety) are showing faster improvement. Some areas, however—for example, the wait for renal transplant—are far from the Healthy People 2010 goals for them. The reports try to identify the areas of progress and the areas where we are doing poorly.
The Disparities Report found that health disparities are still pervasive for lower SES groups and minority groups compared to higher income individuals and whites. Now that it has three-plus years of data for nearly all measures, AHRQ is able to track disparities and show trends. It finds that for racial disparities in quality of care, more measures are headed in the direction of reducing or eliminating disparities than those headed in the opposite direction. The report also shows “the other side,” where disparities are getting worse, targeting areas that are “ripe for a disparities intervention.” The report also highlights information gaps, of which there are many, though Dr. May reported that the information gap is getting smaller. One reason is that nearly all data sources have now completed the transition to the 1997 OMB standards. AHRQ has begun to look at the association between disparities and quality, on the one hand, and language and country of origin, on the other, using new MEPS information, and this is included in the 2005 report.
Future directed activities include a major imitative to improve the inputs into the reports. This is approached from three perspectives: filling identified measurement gaps, making sure the right health conditions are being covered, and tapping into new and innovative data sources. Dr. Moy gave examples in each area. In the measurement gaps area, AHRQ convened an expert advisory group to develop a unified definition of disability for use with every data set. In response to a question from Ms. Greenberg, he said he didn’t know if they would recommend the biopsychosocial definition used in the International Classification of Functioning, Disability and Health (ICF). AHRQ needs something with existing measures; if no such measures exist related to the ICF, he said, this could lead to recommendations about data gaps for future collection. He added that data gaps were an area in which NCVHS has some “leverage” and could help.
Dr. Moy agreed with Mr. Localio that AHRQ’s estimates are only as good as the data on which they rely. The agency is open to input on how to use the new repositories on voluntary patient safety reporting. Dr. Steinwachs asked for suggestions to the Subcommittee on Populations on how it could best support the two reports; Dr. Moy said he would think about this and talk with the Subcommittee at a later time. Dr. Vigilante suggested that AHRQ also look at the contributors to health disparities apart from health care that suggest interventions to reduce health care disparities, such as education and asset development. Dr. Carr expressed interest in having more information on AHRQ’s plans to mine EHRs. Dr. Moy said AHRQ hopes to help ONCHIT develop standardized data items on quality that should be captured and that could then flow into its reports. He described for Mr. Hungate how providers can use AHRQ methodology and tools to self-evaluate and compare to its benchmarks. He noted that although providers have to do this for themselves, many of AHRQ’s indicators come from HEDIS and Healthy People, with which providers are familiar. To a question about the reliability of the indicators, he said the compositing process is enabling AHRQ to “filter out some of the garbage,” but communities still have to weigh the relevance for themselves.
Dr. Cohn thanked him for his presentation and said the Committee hoped to collaborate with him on these issues in the future.
Subcommittee and Workgroup reports
- Subcommittee on Privacy and Confidentiality—Mr. Rothstein
The Subcommittee is developing a letter and report to the Secretary on privacy and confidentiality in the NHIN, based on four rounds of hearings. This is proving to be an enormous task, because the issues involved are highly complex and contentious. Mr. Rothstein described some of them, noting that some may require additional hearings. The Subcommittee also plans to look at especially problematic areas of HIPAA such as the notice and acknowledgment requirement and the right to request amendments provision.
- Subcommittee on Standards and Security—Dr. Huff
The Subcommittee is focusing on a balanced portfolio, and Dr. Huff noted the utility of its new schematic for that purpose. The issues it is looking at include e-prescribing, secondary uses of clinical data, matching patients to their records, the status of ICD-10, and HIPAA return on investment. It also plans to be responsive to any requests from the Secretary or Dr. Brailer.
Ms. McCall commented on the interrelationships and intersections among the agendas of the various NCVHS subgroups, and in particular the Quality Workgroup’s interest in secondary data uses. Members commented on ways the two groups could collaborate.
- Quality Workgroup—Mr. Hungate
The Workgroup has begun a project to develop a vision for using health IT and knowledge management to enhance quality. The idea is to complement and bridge the NCVHS visions for the NHII (2001) and 21st century health statistics (2002). The Workgroup hopes to have a preliminary document ready within a year. It will hold a hearing on November 18. Mr. Hungate welcomed the appointment of Ms. McCall as his co-Chair and Dr. Carr’s appointment as liaison to the AHRQ NAC. He commented on the Workgroup’s need for stronger and more comprehensive staffing from federal agencies.
Ms. McCall reiterated the need to strengthen relationships, both those among NCVHS subcommittees and workgroups and those with key public and private initiatives with a potential for synergy.
Dr. Carr noted the relevance of Dr. Moy’s comments on building links between quality and the EHR and the Workgroup’s plan to follow up on this.
- Subcommittee on Populations—Dr. Steinwachs
The Subcommittee’s report on race and ethnicity data will soon be released, and work is underway on the dissemination plan. For its future agenda, it is considering a focus on improving the capacity for population quality measures. For this, better data are needed on both race/ethnicity and on SES. The question raised by Dr. Vigilante about information and interventions needed apart from health care—e.g., education—is another subject of interest. Dr. Steinwachs noted the overlaps in the membership of the Subcommittee on Populations and the Quality Workgroup, making it likely that their agendas will be closely related.
Mr. Hitchcock added that the Subcommittee may also look at the data issues and opportunities highlighted by the hurricane disaster and relief effort. Dr. Steinwachs said it would be useful to follow some of the victims over time, if possible, in order to get more learnings into the published literature than was the case following 9-11. The possible subjects include the health and mental health sequellae of the disaster on individuals, the effects of having the infrastructure wiped out, the nature of knowledge management, the handling of the relief effort, and manpower and services issues. Members agreed to ask Mr. Scanlon to brief them on all these topics in the near future.
From the audience, Dr. Reed Gelzer informed the group about the military’s CHCS2, a population surveillance tool developed in the first Iraq war that provides “real-world experience” with potential applications to the current situation.
- NHII Workgroup—Dr. Cohn
Dr. Cohn noted that the PHR letter report represented about two years of work by the Workgroup, which will decide on next steps in November.
Future Agendas and other Committee Business
These topics were mentioned for the November NCVHS meeting or a subsequent one:
- Secondary data uses (Dr. Huff taking the lead)
- Possible action item from the Subcommittee on Privacy and Confidentiality
- Presentation by Dr. Friedman
- Status report from NCHS and its BSC
- CMS Scopes of Work (QIOs) (or it will be part of the Quality Workgroup agenda)
- Briefing on the learnings from the hurricane disaster (defer to Feb. 06)
- Meeting with the DHS Chief Medical Officer (defer to Feb. 06)
- Update on international classifications (or in February 2006)
Dr. Carr praised the schematic developed by Mr. Reynolds for the Subcommittee on Standards and Security and encouraged all the workgroups and subcommittees to create similar schematics—which Ms. McCall dubbed “a strategy on a page”—describing their work. This will make it easier for the NCVHS subgroups to understand each other’s activities. Dr. Carr offered to send around a template that can be used for this purpose.
This led to a conversation about the value a strategic planning activity could have for the entire Committee, something that historically only the Executive Subcommittee has engaged in. The possibility of a periodic full Committee retreat devoted to strategic planning and related “big picture” matters was discussed. There was agreement on the merits of clarifying long-term objectives for the Committee, even though NCVHS also has to respond to short-term requests from the Secretary. One member suggested that this take place close to the time that new members are brought onto the Committee. Ms. Greenberg noted that the Executive Subcommittee had engaged in a strategic planning activity a few years ago in Cambridge, MA, and the resulting document might still be useful.
Ms. Greenberg then informed the Committee that the Executive Subcommittee had decided that for Subcommittee and Workgroup meetings, full minutes would no longer be produced, but only transcripts and brief synopses. Full Committee meetings will continue to have both minutes and transcripts because they are widely distributed.
Finally, noting that this meeting featured few presentations and a good deal of Committee discussion and collaborative work, Dr. Cohn asked members to share their views on the optimal mixture of presentations versus internal discussion in future meetings. The overwhelming response was that the discussion and joint work in this meeting were very positive and useful and that in future full Committee meetings, presentations should be kept to a minimum. Several members observed, citing the PHR letter discussion, that what might be regarded as “wordsmithing” was in fact primarily discussion of fundamental concepts and principles that underlie the recommendations. Members expressed appreciation for the chance the discussion afforded them to learn in depth about the content and to develop synergies in the expertise and experience present on the Committee. The dialogue is also valuable in allowing the Committee to clarify its own thinking. A commonly expressed view was that most presentations should take place at the Subcommittee and Workgroup level and that full Committee meetings should primarily be for dialogue and the work of synthesizing. When there are presentations, it was suggested that ample time be allowed not just for questions and answers but also for dialogue within the Committee about what it has heard and learned. One idea was to vet draft recommendations with the full Committee and explain the thinking behind them at a relatively early stage. The reasoning is that it is preferable for members to be educated about the subject of a forthcoming report and be able to discuss it before the lead Workgroup or Subcommittee has reached a consensus that does not represent the larger body.
Dr. Cohn then adjourned the meeting.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
_______/s/_____________________________________November 16, 2005____