The National Committee on Vital and Health Statistics is one of the oldest and most prestigious advisory groups serving the Department of Health and Human Services. Its recommendations have helped to shape our nations health statistics and data policy for fifty years. When I expanded the Committees charter in 1996, it was my hope that it would become a broad-based national health information policy advisory body to the Department as well as a bridge to the industry and the research and public health communities.
I am extremely pleased to say that the Committee has more than met my expectations. Its leadership and advice have been invaluable to the Department in addressing the requirements of the Health Insurance Portability and Accountability Act for national data standards and privacy, in improving our population-based data systems, and in promoting a vision for the national health information infrastructure that ties all of these elements together.
I extend my congratulations to NCVHS on completing 50 years of service to the nation. We can all look forward to the Committees continuing contributions to health information policy as NCVHS helps government, private organizations, and citizens make informed decisions to improve the health of all Americans.
Department of Health and Human Services
Introduction: About the National Committee
Highlights of 1995-1999
The HIPAA Challenge
Core Health Data Elements Recommendations and Follow-Up
Privacy and Confidentiality
Population Subcommittee Recommendations
Two Evolving Visions
Past as Prologue
NCVHS Roster, 1995-1999 Retirees
1. Chairs and Executive Secretaries, 1949-1999
2. Subcommittees and Workgroups, 1995-1999
3. Reports and Recommendations, 1995-1999
4. NCVHS Charter
The National Committee on Vital and Health Statistics (NCVHS) is the statutory public advisory committee to the Secretary of Health and Human Services on health data, privacy, and health information policy. NCVHS was created in 1949 at the request of the World Health Organization (WHO) as part of an international effort to build national and international health statistics. Through the years, it has contributed to the development of the International Classification of Diseases (ICD), advocated for standardization, studied and made recommendations on data aspects of pressing national health issues, and advised government on surveys and other data collection efforts.
Sixteen of the Committees 18 members are appointed by the HHS Secretary, and two are appointed by Congress. All are selected for their expertise and distinction as researchers, educators, and practitioners in such fields as population-based public health, epidemiology, health services, privacy, health statistics, health information systems, and health data standards. The full Committee meets four times a year. Each of its subcommittees and workgroups (listed in the appendix) meets an additional three to five times a year. All meetings are open to the public, and most are broadcast on the Internet. Transcripts, minutes, and reports are published on the NCVHS Web site, where records of all the Committees activities can be found.
In the early years, NCVHS members and consultants were mostly statisticians, from both the public and private sectors. They worked primarily with WHO, concentrating on the technical intricacies of building an international health statistics infrastructure and contributing to the shift in international statistics to encompass morbidity as well as mortality. The Committees initial work on the U.S. infrastructure was seminal in the development of the National Health Survey.
Domestic health statistics became the major focus after 1964, following a 15th anniversary conference that highlighted such still-familiar concerns as the dominance of administrative data; the need for data on communities, socioeconomic status, race, and chronic disease; and the rising cost of health care. International classification issues continued as an interest, especially during the periodic revisions of ICD. In 1974, a new legislative mandate authorized the Committee to actively advise the Secretary of the Department of Health, Education and Welfare (now Health and Human Services).
Standards development has been a signal activity of the National Committee since its inception, and particularly since 1970 when it began a long effort to develop and promote common data standards, terms, and definitions. The ensuing years have seen many milestones: minimum data sets for hospital, ambulatory, and long-term care; recommendations on core health data elements; and a key role in administrative simplification activities. The Committees increasing consultation with private sector organizations and its growing partnership with the Department have been hallmarks of these efforts. A 1995 Symposium, held to mark the Committees 45th year, had as its theme the potential for partnerships between the public and private sectors and among levels of government.
Congress extended the Committees purview to policy affecting both public and private sector data activities in 1996, with passage of the Health Insurance Portability and Accountability Act (HIPAA). The law directs NCVHS to advise the Department on standards for electronically transmitted administrative and financial transactions in health care, as well as on standards to protect the privacy and security of the information. It calls for an annual NCVHS report to Congress on implementation of the privacy protection, administrative simplification, and standards adoption provisions of HIPAA.
The history of NCVHS has been well documented through annual or periodic reports from 1949 through 1998, in reports on the occasion of the 15th and 20th anniversaries, and in a 45-year history published in 1995. The present report on NCVHS at 50 ¾ which is a companion document to the 45th year report and picks up where it leaves off ¾ serves multiple purposes. First, it outlines the Committees accomplishments in 1999. It then summarizes the major events and themes of the period 1995 through 1999, completing the sketch of the Committees first 50 years. (1) Finally, it looks from this platform into the future, offering the reflections of key participants about the Committees accomplishments and the challenges it faces in the future.
Listed below are the highlights of the National Committees 1999 work, focusing on the projects and recommendations it completed during that year.
Much of the Committees work in 1999 continued or laid the groundwork for projects that will culminate in 2000 or 2001. These activities¾encompassing quality, privacy, patient medical record information, and functional status measurement as well as two major visioning projects and international liaisons¾are discussed below.
The last five years for NCVHS have been characterized by heightened responsibility and accountability, an unprecedented work load, and the challenge of integrating new assignments with longstanding priorities.
Starting in 1996, the Committee intensified its efforts in order to fulfill the role Congress laid out for it in HIPAA with respect to advising on privacy and administrative simplification policy. At the same time, the Committee labored to sustain activities around the longstanding NCVHS commitment to building the information infrastructure for population-based health and improving information on vulnerable populations. Thanks to the timely opening of nine seats in 1996, new appointees with expertise in privacy, standards and health informatics complemented the other areas already represented or newly added.
Along with new duties have come new relationships. First, Congressional appointment of two NCVHS members and the annual HIPAA implementation report represent a new, direct relationship with Congress. In addition, the longtime relationship to the Department has a new character. NCVHS has advised the Department since 1974. (Prior to that, its official relationship was with the Surgeon General.) However, only since HIPAA has the Department been required to rely upon the recommendations of the Committee, at least in the areas covered by the law.
The Committees historic role as a forum for major policy issues and a meeting place between the Department, the private sector, and civil society has been especially useful to the Department as it develops regulations on standards and privacy. Since 1996, NCVHS has held a total of 41 public hearings on aspects of HIPAA. These meetings offer ways for the Department to consult a broad spectrum of opinion, interest, and expertise and also to identify potentially sensitive issues so they can be addressed with special care.
The Committee marked its 45th year by commissioning a history of NCVHS and co-hosting a symposium aimed at promoting dialogue and partnerships among health and public health organizations in the federal, state, local, and private sectors. The two-day meeting was held in conjunction with the Public Health Conference on Records and Statistics, and co-sponsored by the Centers for Disease Control and Prevention, the Robert Wood Johnson Foundation, and the W.K. Kellogg Foundation.
Besides celebrating the Committees 45th anniversary, a major impetus for the symposium was a desire to address the rapid changes taking place in and impacting on the health field in the mid-1990s. The participants explored a range of topics: the data needs of community-based programs, the responsibilities of states and localities, the impact of managed care initiatives on the health information infrastructure, and the potential for enhanced partnerships among the sectors represented.
NCVHS subsequently published a volume containing a summary of the proceedings, two featured speeches, and the 45-year history (1997).
The heavy work load and the opportunity to offer high-level policy advice has left NCVHS with less time in recent years for the kind of detailed advising on surveys and data content that it had done previously. The Committee completed a landmark project of this kind in 1996 with its core health data elements recommendations. At the Departments request, the Committee spent two years evaluating common core health data sets for enrollment and health care encounters, and surveying the health field in search of consensus about health data content for ambulatory, hospital, and long-term care settings.
The resulting report recommends 42 data elements for standardization and calls attention to six priority elements that need further study before consensus can be reached. One of these priority elements, functional status, is the focus of a 1999-2000 Populations Subcommittee project.
Achieving comparability in the health data collected by federal agencies, states and localities, the private sector, and the international community has been the broad goal in the National Committees longstanding efforts to promote the standardization of health information and to help design specific standards.
The HIPAA legislation provided a new framework and focus for this longstanding endeavor, and also directed considerably more public attention to it. In the 1990s, the health care industry took the lead in efforts to standardize business functions. Congress used HIPAA to mobilize HHS and NCVHS to support these voluntary efforts, to consult with industry, and to use these inputs to inform national policy and regulations aimed at administrative simplification.
The details of this work are outlined in the Committees 1998 and 1999 annual reports to Congress on HIPAA implementation. Briefly, the Department released four Notices of Proposed Rule-Making (NPRMs) in 1998 and a Privacy NPRM in 1999, in each case drawing on the Committees advice and the inputs from dozens of NCVHS hearings. The Committee submitted formal comments to the Department on each proposed rule. This process will continue as new NPRMs are developed, both those named in HIPAA as well as new standards recommended by standards development organizations.
In 1999, the Subcommittee on Standards and Security was able to turn more of its attention to how it will monitor the implementation and modification of the standards, as directed by Congress.(2) The other major project in this area, managed by the Workgroup on Computer-based Patient Records, is the development of recommendations for standardizing patient medical record information (PMRI). The Workgroup began a series of hearings in 1998 in preparation for its report to the Department and Congress in August 2000.
As an important adjunct to these activities, the Committee has supported an NCHS initiative to involve public health professionals and health services researchers in the HIPAA standards development process to ensure that emerging standards are relevant to population-based information needs. These communities have formed a Public Health Data Standards Consortium with that objective.
The Committee submitted recommendations on health information privacy to the Secretary in June 1997. Its major recommendations were that the Department and Administration assign the highest priority to developing a strong position on health privacy, and that Congress expeditiously enact a health privacy law. The report notes that patients important and well-established interest in the privacy protection of their health information must be balanced with the health care systems legitimate need to efficiently provide and pay for health care, and also with the responsible use of health records for public health and health research. The report also recommends specific fair information practices for inclusion in a privacy law.
To date, Congress has not enacted a health privacy law. As a result, the Department issued proposed privacy regulations in late 1999 in accordance with a HIPAA requirement. The Committee responded by preparing comments for submission in early 2000.
The Committee believes that the lack of national health information privacy legislation is a serious impediment to bringing the full benefits of health information technology to the health sector. The lack of such legislation also has heightened public concerns about the confidentiality of personal health information. NCVHS hearings and meetings where this subject was discussed have served as a lightning rod for the strong and divergent opinions on the individual identifier, both within the Committee and among its constituents.
As noted, in 1999 the Committee submitted to the Secretary two reports and sets of recommendations prepared by the Subcommittee on Populations. Both are posted on the NCVHS Web site.
The report on Medicaid managed care considers the importance of data collection and use in Medicaid managed care, examines the legal and operational framework, and presents the Subcommittees findings and recommendations for strengthening and improving data collection and use. Overall, the Subcommittee found that despite considerable efforts by states, the collection, reporting and analysis of Medicaid managed care data still need improvement. The report recommends that HHS use its authority to be more specific about the manner and format for collecting and reporting Medicaid managed care data, to foster uniformity and comparability in the information. It also emphasizes the need for consistency between data collection and reporting requirements and HIPAA-related decisions on privacy, confidentiality, and security of data transactions.
The Subcommittee studied health statistics in the U.S.-associated Pacific insular areas, Puerto Rico, and the Virgin Islands out of concern about the availability and utility of data on public health, chronic illness, and disability in these areas. Significant contributing factors are the underdevelopment of health information systems and the general lack of inclusion of these areas in national health surveys. The Subcommittee convened a public hearing in 1998, at which it heard testimony from the representatives of eight islands and territories as well as from federal officials. It also studied federal health data activities in these areas and generally assessed their health data needs. The resulting report stresses the diversity among these islands and territories in terms of the sophistication of their data collection systems, their geographic and demographic characteristics, and their public health needs. However, they have in common a need to strengthen their internal data collection and analysis capacity. The Subcommittees recommendations are in four areas: health data infrastructure, local data processes, an expanded and more flexible approach to using federal funds, and a voice at the HHS policy table.
In 1997, Gail F. Fisher, Ph.D., retired as Executive Secretary to NCVHS after 14 years of service. Her successor, Marjorie S. Greenberg, is the Committees seventh Executive Secretary in 50 years. A new position was created for an Executive Staff Director in the Office of the Secretary, a position held by James Scanlon. There were two changes in Chairmanship between 1995 and 2000. The gavel passed from Judith Miller Jones to Don E. Detmer, M.D., in 1996, and from him to John L. Lumpkin, M.D., in 1998.
During this five-year period, the Committee simplified its subcommittee and workgroup structure. This meant both broadening subcommittee charges, partly to accommodate HIPAA mandates, and also reluctantly moving some traditional concerns to the back burner. (Examples are mental health statistics, improving the quality of state and local data, and working for a single procedure classification system.)
The public gained greater access to Committee deliberations and documents during this period, thanks both to the Internet and to new NCVHS policies that go well beyond what is required of federal advisory committees. The Veterans Administration, a creative partner in several NCVHS activities, began broadcasting Committee meetings over the Internet in 1997. Also, partly in response to heightened public attention to privacy issues, the Committee initiated the practice of providing all attendees copies of all documents under discussion at meetings. As an indication of the interest in the Committees deliberations, NCVHS meetings typically have an audience of at least 50 people, and the minutes are not only posted on the NCVHS Website(3) but mailed to a list of 1,300. The Website averages 33,700 home page visits and 483,000 hits per year.
In the final years of the 20th century, NCVHS embarked on two ambitious projects to clarify how emerging information capacities can be used most effectively to promote the nations health and meet future health needs. Both projects will generate detailed Vision statements¾one on 21st century health statistics, the other on the National Health Information Infrastructure (NHII). As each has produced an interim report that speaks best for itself, they are only briefly described here.(4) The two reports will be the centerpiece of the 50th Anniversary Symposium being hosted by the National Academy of Sciences in the Committees honor on June 20, 2000.
The 21st Century Health Statistics Vision initiative began in 1999 under the joint auspices of NCVHS, NCHS, and the HHS Data Council. The coordinators are sponsoring a series of consultations around the country with health statistics users, public health professionals, and health care providers at local, state, and federal levels. The objective is to elicit a broad range of expert opinion on the major trends and issues in population health and their implications for future information needs. This consultative process will generate a final Vision document in Summer 2001, together with suggestions for its use in program planning and criteria for evaluating future health statistics systems.
NCVHS launched the NHII initiative in 1997 and published a concept paper on it in 1999 after presenting it to the Data Council.(5) The purpose of this sweeping project is to wrap a conceptual framework around all existing, developing, and as yet unrealized public and private sector health information systems in community, provider, and personal dimensions. By clarifying the relationships among these many facets, the NHII framework will make it possible to coordinate and integrate health information systems and activities more efficiently and to identify critical gaps.
One of the anticipated benefits of these two closely related endeavors is that the inter-connections between population health and individual health, those between health and health care, and the implications of all these dynamics for health information policy will be made more clear. This should help the Committee coordinate what Chairman John Lumpkin calls the left and right brains of its work¾medical care and population health.
An important and stimulating dimension of both the NHII and health statistics projects is the opportunity to collaborate with and learn from other countries. These links were made manifest at the February 1999 NCVHS meeting, when the developers of the national health information infrastructures of Australia, Canada, and the United Kingdom reported on their countries activities and plans in this area and talked with the Committee about common information needs for national health policy. The growing sense of connection to the international context in the Committees fiftieth year neatly reconnects it with its origins.
We can pay our debt to the past by putting the future in debt to ourselves.
NCVHS Chair Dr. John Lumpkin observes that history can be viewed in terms of the impacts of transforming technologies: the plow, industrial production, antibiotics, and so on. Today, in health as in other areas, the major transformations are taking place in and through information. Dr. Lumpkin sees the Committees fundamental role as helping government manage this transformation for the common good.
His predecessor, Dr. Don Detmer, notes that the growing complexity and power of information technology means that to craft appropriate policies, the government will increasingly need to call on external expertise such as that available through the Committee.
As it grows into this expanding role, Dr. Lumpkin, Dr. Detmer and others agree that the Committee must build on and strengthen its historic commitment to promoting health for the entire population. Executive Secretary Marjorie Greenberg adds that building a public health platform under the evolving information infrastructure may call for a willingness to challenge government and industry as to how the nation will benefit from infrastructure investments.
Above all, perhaps, the Committee needs an overarching vision of the kind now being crafted. To complement these visioning efforts, the Committee will conduct its own strategic planning initiative beginning in August 2000.
Those interviewed for this report identify several specific issues they think deserve priority attention as the Committee looks toward the future. One is the need for strong federal support of NHII development. Dr. Detmer notes that only a solid national information infrastructure can solve the worrisome problem of medical error that came to national attention in a recent Institute of Medicine report. Dr. Detmer also hopes the Committee will encourage the Department to increase its involvement in the international arena. In particular, he points to the merits of the global initiative to develop a data dictionary, which needs American support.
Dr. Lumpkin notes that the Committee is not large enough to address all of the health information policy issues nominally on its agenda. He calls special attention to its inability to do justice to data gaps such as those on specific ethnic groups, or to advise NCHS on specific surveys.
Finally, the Committee will probably continue to deliberate over how its expertise and recommendations can best be used to educate policy makers, including members of Congress, about informations essential role in relation to health. Small size, large agenda, and the lack of a specific mandate in this area all bring the Committee again and again to the conclusion that it cannot mount a public education campaign. Yet again and again, the lack of awareness and understanding that (in the words of the World Health Organization) the road to health leads through information leaves the need for education as a gap that someone must address.
This report was written by Susan Baird Kanaan.
(See also the list of NCVHS reports and recommendations in 1995-99, Appendix 2.)
John R. Lumpkin, M.D., M.P.H.
Illinois Department of Public Health
Director, Division of Data Policy
Office of the Assistant Secretary for Planning and Evaluation, DHHS
Marjorie S. Greenberg
Chief, Data Policy and Standards Staff
Office of Data Standards, Program Development and Extramural Programs
National Center for Health Statistics, CDC
Jeffrey S. Blair, M.B.A.
Medical Records Institute
Albuquerque, New Mexico
Simon P. Cohn, M.D., M.P.H., FACP
National Director for Health information Policy
Kaiser Permanente Medical Care Program
Kathryn L. Coltin, M.P.H.
Clinical Measurement Systems and External Affairs
Harvard Pilgrim Health Care
Kathleen A. Frawley, J.D., M.S., R.R.A.
Director, Health Information Services
St. Marys Hospital
Passaic, New Jersey
Daniel Friedman, Ph.D.
Bureau of Health Statistics, Research and Evaluation
Massachusetts Department of Public Health
Kathleen Fyffe, M.H.A.
Federal Regulatory Director
Health Insurance Association of America
Robert M. Gellman, J.D.
Privacy and Information Policy Consultant
Richard K. Harding, M.D.
Clinical Professor of Psychiatry and Pediatrics
Vice Chairman, Clinical Services
Neuropsychiatry & Behavioral Science
University of South Carolina
Lisa I. Iezzoni, M.D., M.S.
Professor, Department of Medicine
Harvard Medical School and Division of General Medicine & Primary Care
Beth Israel Deaconess Medical Center
Andrew Kramer, M.D.
Professor of Geriatric Medicine
University of Colorado Health Sciences Center
Clement Joseph McDonald, M.D.
Indiana University School of Medicine
Distinguished Professor of Medicine
Paul Newacheck, Dr.P.H.
Professor of Health Policy and Pediatrics
Institute of Health Policy Studies
University of California at San Francisco, School of Medicine
San Francisco, California
Mark A. Rothstein, J.D.
Hugh Roy and Lillie Cranz Cullen Distinguished Professor of Law
Director, Health Law and Policy Institute
University of Houston
Barbara Starfield, M.D., M.P.H.
Distinguished University Professor and Professor of Health Policy and Pediatrics
School of Hygiene/Public Health
The Johns Hopkins University
M. Elizabeth Ward, M.N.
CEO, Foundation for Health Care Quality
Kepa Zubeldia, M.D.
Vice President, Technology
Gary G. Christoph, Ph.D.
Chief Information Officer
Health Care Financing Administration
J. Michael Fitzmaurice, Ph.D.
Senior Science Advisor for Information Technology
Agency for Healthcare Research and Quality
Hortensia Amaro, Ph.D.
Department of Social and Behavioral Sciences
Boston University School of Public Health
Vincent Mor, Ph.D.
Center for Gerentology and Health Care Research
Providence, Rhode Island
David T. Takeuchi, Ph.D.
Department of Sociology
George H. Van Amburg
State Registrar and Chief
Office of the State Registrar and Center for Health Statistics
Michigan Department of Public Health
Carlos Arce, Ph.D.
Thomas A. LaVeist, Ph.D.
Associate Professor of Health and Public Policy
Department of Health Policy and Management
School of Hygiene and Public Health
The Johns Hopkins University
Sheila T. Leatherman
United HealthCare Corporation
Judith Miller Jones, Chair
National Health Policy Forum
John T. Ashley, M.D.
Associate Vice President
University of Virginia Health Sciences Center
Great Neck, New York
Judith D. Kasper, Ph.D.
Department of Health Policy and Management
The Johns Hopkins University
Health Technology Associates
James W. Thompson, M.D.
Associate Professor of Psychiatry
University of Maryland at Baltimore
School of Medicine
Thomas T.H. Wan, Ph.D.
Professor and Chair
Department of Health Administration
Medical College of Virginia
Virginia Commonwealth University
David R. Williams, Ph.D.
Associate Research Scientist
Associate Professor of Sociology
Institute for Social Research
University of Michigan
Ann Arbor, Michigan
Nicholas Zill, Ph.D.
Byron C. Pevehouse, M.D.
San Francisco, California
Office of Systems Management
Health Care Financing Administration
Harvey Schwartz, Ph.D.
Acting Deputy Director
Center for Information Technology
Agency for Health Care Policy and Research
Gail F. Fisher, Ph.D.
Associate Director, Office of Planning and Extramural Programs National Center for Health Statistics
1998-present John L. Lumpkin, M.D.
1996-1998 Don E. Detmer, M.D.
1991-1996 Judith Miller Jones
1983-1986 Ronald G. Blankenbaker, M.D.
1983-1986 Robert H. Barnes, M.D.
1983 Cleve Killingsworth, Jr.
1979-1980 Lester Breslow, M.D.
1975-1979 Kerr L. White, M.D.
1973-1974 Abraham Lilienfeld, M.D.
1970-1972 Forrest E. Linder, Ph.D.
1967-1969 Robert Berg, M.D.
1963-1967 Robert Dyar, M.D.
1961-1963 Brian MacMahon, M.D.
1961 Pascal K. Whelpton
1957-1960 Philip M. Hauser, Ph.D.
1949-1956 Lowell J. Reed, Ph.D.
1997-present Marjorie S. Greenberg
1983-1997 Gail F. Fisher, Ph.D.
1979 Samuel P. Korper, Ph.D., M.P.H.
1977-1979 Gooloo S. Wunderlich, Ph.D.
1975-1976 James M. Robey, Ph.D.
1974 I.M. Moriyama, Ph.D.
1972-1973 Dean E. Krueger
1949-1972 I.M. Moriyama, Ph.D.
Subcommittee on Standards and Security
Workgroup on Computer-based Patient Records
Subcommittee on Privacy and Confidentiality
Subcommittee on Populations
Workgroup on Health Statistics for the 21st Century
Workgroup on Quality
Workgroup on National Health Information Infrastructure
November 1996 to June 1998
Subcommittee on Health Data Needs, Standards and Security
Workgroup on Data Standards
Workgroup on Population-Based Data
Subcommittee on Populations at Risk (renamed Subcommittee on Population-Specific Issues)
Subcommittee on Privacy and Confidentiality
Workgroup on Planning and Implementation
1995 to November 1996
Subcommittee on Medical Classification Systems
Subcommittee on Ambulatory and Hospital Care Statistics
Subcommittee on State and Community Health Statistics
Subcommittee on Health Statistics for Minority and Other Special Populations
Subcommittee on Mental Health Statistics
Subcommittee on Disability and Long-Term Care Statistics
Monitor for Confidentiality
· August 24, 1995, Letter updating the field on the status of its recommendation for development and adoption of a single procedure classification system
THE SECRETARY OF HEALTH AND HUMAN SERVICES
National Committee on Vital and Health Statistics
The National Committee on Vital and Health Statistics is the Department's statutory public advisory body on health data, statistics and national health information policy. This Committee shall serve as a national forum on health data and information systems. It is intended to serve as a forum for the collaboration of interested parties to accelerate the evolution of public and private health information systems toward more uniform, shared data standards, operating within a framework protecting privacy and security. The Committee shall encourage the evolution of a shared, public/private national health information infrastructure that will promote the availability of valid, credible, timely and comparable health data. With sensitivity to policy considerations and priorities, the Committee will provide scientific-technical advice and guidance regarding the design and operation of health statistics and information systems and services and on coordination of health data requirements. The Committee also shall assist and advise the Department in the implementation of the Administrative Simplification provisions of the Health Insurance Portability and Accountability Act, and shall inform decision making about data policy by HHS, states, local governments and the private sector.
42 U.S.C. 242k(k), Section 306(k) of the Public Health Service Act, as amended. The Committee is governed by provisions of Public Law 92-463, as amended, (5 U.S.C. App. 2), which sets forth standards for the formation and use of advisory committees.
It shall be the function of the Committee to assist and advise the Secretary through the Department of Health and Human Services Data Council, on health data, statistics, privacy, national health information policy, and the Department's strategy to best address those issues.
Specifically, the Committee shall advise the Department in the following matters:
(A) Monitor the nation's health data needs and current approaches to meeting those needs; identify emerging health data issues, including methodologies and technologies of information systems, databases, and networking that could improve the ability to meet those needs.
(B) Identify strategies and opportunities to achieve long-term consensus on common health data standards that will promote (i) the availability of valid, credible, and timely health information, and (ii) multiple uses of data collected once; recommend actions the federal government can take to promote such a consensus.
(C) Make recommendations regarding health terminology, definitions, classifications, and guidelines.
(D) Study and identify privacy, security, and access measures to protect individually identifiable health information in an environment of electronic networking and multiple uses of data.
(E ) Identify strategies and opportunities for evolution from single-purpose, narrowly focused, categorical health data collection strategies to more multi-purpose, integrated, shared data collection strategies.
(F ) Identify statistical, information system and network design issues bearing on health and health services data which are of national or international interest; identify strategies and opportunities to facilitate interoperability and networking.
(G) Advise the Department on health data collection needs and strategies; review and monitor the Department's data and information systems to identify needs, opportunities, and problems; consider the likely effects of emerging health information technologies on the Departments data and systems, and impact of the Departments information policies and systems on the development of emerging technologies.
(H) Stimulate the study of health data and information systems issues by other organizations and agencies, whenever possible.
(I) Review and comment on findings and proposals developed by other organizations and agencies with respect to health data and information systems and make recommendations for their adoption or implementation.
(J) Assist and advise the Secretary in complying with the requirements imposed under Part C of Title XI of the Social Security Act;
(K) Study the issues related to the adoption of uniform data standards for patient medical record information and the electronic interchange of such information, and report to the Secretary not later than August 21 2000 recommendations and legislative proposals for such standards and electronic exchange;
(L) Advise the Secretary and the Congress on the status of the implementation of Part C of Title XI of the Social Security Act;
(M) Submit to the Congress and make public, not later than one year after the enactment of the Health Insurance Portability and Accountability Act, and annually thereafter, a report regarding the implementation of Part C of Title XI of the Social Security Act. Such report shall address the following subjects, to the extent that the Committee determines appropriate:
(N) Assist and advise the Secretary in the development of such reports as the Secretary or Congress may require.
In these matters, the Committee shall consult with all components of the Department, other federal entities, and non-federal organizations, as appropriate.
The Committee shall consist of 18 members, including the Chair. The members of the Committee shall be appointed from among persons who have distinguished themselves in the fields of health statistics, electronic interchange of health care information, privacy and security of electronic information, population-based public health, purchasing or financing health care services, integrated computerized health information systems, health services research, consumer interests in health information, health data standards, epidemiology, and the provision of health services. Members of the Committee shall be appointed for terms of up to four years. The Secretary shall appoint one of the members to serve a two year, renewable term as the Chair.
Of the members of the Committee, one shall be appointed by the Speaker of the House of Representatives after consultation with the minority leader of the House of Representatives; one shall be appointed by the President pro tempore of the Senate after consultation with the minority leader of the Senate, and 16 shall be appointed by the Secretary.
Membership terms of more than two years are contingent upon the renewal of the Committee by appropriate action prior to its termination. Any member appointed to fill a vacancy occurring prior to the expiration of the term for which his or her predecessor was appointed shall be appointed only for the remainder of such term. Members may serve after the expiration of their terms until successors have been appointed.
Standing and ad hoc subcommittees, composed solely of members of the parent Committee, may be established to address specific issues and to provide the Committee with background study and proposals for consideration and action. The Chair shall appoint members from the parent Committee to the subcommittees and designate a Chair for each subcommittee. The subcommittees shall make their recommendations to the parent Committee. Timely notification of the subcommittees, including charges and membership, shall be made in writing to the Department Committee Management Officer by the Executive Secretary of the Committee. The HHS Data Council, through the Assistant Secretary for Planning and Evaluation, shall oversee and coordinate the overall management and staffing of the Committee. Professional, scientific, and technical staff support shall be provided by all components of the Department. The National Center for Health Statistics shall provide executive secretariat and logistical support services to the Committee.
Meetings shall be held not less than annually at the call of the Chair, with the advance approval of a Government official, who shall also approve the agenda. A Government official shall be present at all meetings.
Meetings of the subcommittees shall be held at the call of the Chair, with the advance approval of a Government official, who shall also approve the agenda. A Government official shall be present at all subcommittee meetings. All subcommittees shall report their findings to the Committee. Meetings shall be open to the public except as determined otherwise by the Secretary; notice of all meetings shall be given to the public. Meetings shall be conducted, and records of the proceedings kept, as required by the applicable laws and departmental regulations.
Members who are not full-time Federal employees shall be paid at a rate not to exceed the daily equivalent of the rate in effect for an Executive Level IV of the Executive Schedule for each day they are engaged in the performance of their duties as members of the Committee. All members, while so serving away from their homes or regular places of business, may be allowed travel expenses, including per diem in lieu of subsistence, in the same manner as such expenses are authorized by Section 5703, Title 5, U.S. Code, for employees serving intermittently.
Estimated annual cost for operating the Committee, including compensation and travel expenses for members but excluding staff support, is $600,296. Estimated annual person-years of staff support required is 4.9, at an estimated annual cost of $307,327.
In the event a portion of a meeting is closed to the public, a report shall be prepared which shall contain, as a minimum, a list of members and their business addresses, the Committee's functions, dates and places of meetings, and a summary of Committee activities and recommendations made during the fiscal year. A copy of the report shall be provided to the Department Committee Management Officer.
Unless renewed by appropriate action prior to its expiration, the charter for the National Committee on Vital and Health Statistics will expire on January 16, 2002.
January 31, 2000
Donna E. Shalala
Secretary of Health and Human Services
(1) The activities and themes of 1995 and 1996-1998 are described in much greater detail in the 1995 and 1996-1998 NCVHS reports.
(2) See in particular the seven implementation issues identified in the 1999 HIPAA report.
(4) Both reports are posted on the NCVHS Web site (see References).
(5) Assuring a Health Dimension for the National Health Information Infrastructure is published in the 1996-1998 NCVHS report, pp.19-28.