- A HISTORY -
Susan Baird Kanaan
The mission of the National Committee on Vital and Health Statistics (NCVHS) is to advise on shaping a national information strategy for improving the populations health. The Committee celebrated its 50th anniversary in June 2000 with a Symposium and reception at the National Academy of Sciences. Donna Shalala, Ph.D., Secretary of Health and Human Services, was among the dignitaries present to recognize the Committees contributions to national health policy and population health.
The Committee is charged by Congress with advising the federal government on the information needs underlying health policy. Since 1949, it has carried out that charge by designing, stimulating and coordinating improvements in national and international vital and health statistics. NCVHS provides a bridge between government, the health industry, and research and public health communities as well as connections to those working on health information policy in other countries. It is widely regarded as one of the most influential, effective, and hard-working of federal advisory committees.
The members of NCVHS serve in a voluntary capacity and are selected for their expertise and distinction as researchers, educators, and practitioners in such fields as population-based public health, epidemiology, health services, privacy/confidentiality, health information systems, and health data standards. Since 1996, eighteen individuals have served on the Committee, sixteen appointed by the HHS Secretary and two appointed by Congress.
Over its 50 years, the Committee has reshaped and redirected itself in response to changing external needs and internal priorities and capacities. Initially, NCVHS members and affiliated subcommittees were mostly statisticians representing both public and private sectors. They worked on the technical intricacies of creating an international health statistics infrastructure, cooperating primarily with the World Health Organization. By the mid-1970s, the Committee had a broader skill base and a strong domestic policy orientation that has only strengthened since then. A new legislative mandate in 1975 empowered the Committee to actively advise the Department (then Health, Education and Welfare, later Health and Human Services) on statistical aspects of health policy.
Health policy development has increasingly required the participation of multiple federal agencies as well as states and private organizations. NCVHS has played a strategic role in bringing these forces together around information and statistical issues. The Committee has grown ever more sophisticated at articulating the policy significance of its concerns. Members have invested considerable time and expertise since 1970 in a hallmark effort to standardize common data sets, elements, terms, and definitions. Congress elevated this NCVHS priority in 1996 when it passed the Health Insurance Portability and Accountability Act, or HIPAA, giving NCVHS a key advisory role. Privacy experts were added to the Committee roster to help the Committee advise the Department on strengthening privacy protections.
Over its five decades, the National Committee's contributions to national health information have included groundbreaking recommendations on health surveys, classification systems, minimum data sets, and cause of injury coding (E-codes). It also has supported the evolution of vital and health statistics through the discussions at its meetings, the informal efforts of members and Chairs, and the wide-ranging work of subcommittees, workgroups and panels.
This evolution might be summarized as a process of broadening: from mortality to morbidity statistics; beyond hospital data to other types of care (e.g., ambulatory and long-term); the introduction of standardized minimum data sets to permit comparison and linkage; working to expand the data available on population subgroups and smaller geographic areas; and laying the groundwork for establishing comparability with other nations. All of these efforts have been informed by the Committee's population-based perspective, which seeks to understand and promote the health of all individuals and communities and is especially vigilant on behalf of those whose care has been neglected.
This report provides a brief overview of the Committee's development and accomplishments since 1949. The first section offers a chronological review, with special attention to the Committee's origins and early years because of the light the founders' thinking can shed on contemporary issues and choices. Following this review are brief discussions of the Committee's major areas of activity over five decades: population health, privacy, standardization, medical classification and nomenclature, and the development of broad visions and strategy for the use of information for population health. After a review of two important challenges that have variously engaged the Committee since its inception, the report ends with a look toward the future.
A SCAN OF 50 YEARS
Origins: An International Vision
NCVHS was the product of a post-World War II mobilization of national resources to strengthen international vital and health statistics. Two early accounts, the first from the NCVHS archive, convey the excitement of that time:
The World Health Organization's account, which describes the Paris Conference as "the beginning of a new era in international vital and health statistics," shows the international body's expectations of the new national entities:
The WHO recommendation was evidently well received. The first document produced by the U.S. National Committee notes the assignments given to some twelve participating countries. (1, p.7-8) The United States was asked to work on adapting the International Classification of Diseases (ICD) to the needs of Armed Services, on studying methods of presentation of statistics of multiple causes of death, and on fetal death statistics. By 1969, some 50 countries had national committees, and 59 countries sent representatives to the Second International Conference of National Committees of Vital and Health Statistics, held in Copenhagen, Denmark in October, 1973.(3)
Conceiving the U.S. National Committee
The Department of State of the United States Government acted on the WHO recommendation by asking the Federal Security Administrator to form a national committee. Early in 1949, the Surgeon General of the Public Health Service constituted the United States NCVHS with Dr. Lowell J. Reed, Vice President of Johns Hopkins University, as its chairman. Dr. Kerr White, one of Dr. Reed's successors as NCVHS Chair, describes him as "a giant in the field."
The founders gave careful thought to the composition of the Committee, and agreed on principles that still serve it well: "A principle for the selection of the membership of the committee was adopted, that members should not represent organizations or agencies but rather...be chosen to represent a point of view, an area of interest, or a field of knowledge essential to the carrying out of the Committee's responsibilities...."(4)
The original group numbered 11, with its Executive Secretary serving as an additional ex officio member. The fields and areas of expertise represented in the founding Committee were epidemiology, health planning, health care, health care administration, and public health. While the fields from which Committee members are drawn have been expanded since then to include such domains as health services research, health policy, privacy, and data standards, the principle of selection has remained constant. Members bring distinctive experience and perspectives, but represent no one but themselves.
The early years of the National Committee were characterized by the long-time leadership and influence of two individuals: Dr. Reed, who served as Chair from 1949 until 1956, and Dr. I.M. Moriyama, the Committee's Executive Secretary from its founding through 1971 and then again in 1974. Both were epidemiologists, with a strong interest in international classifications. Dr. Moriyama was on the staff of the National Office of Vital Statistics, the predecessor to the National Center for Health Statistics (NCHS). These two agencies have had staffing responsibility for NCVHS for all but four of its 50 years. Terms for members were instituted in 1958; since then, most Chairs have served for two to four years, generally after first serving as Committee members.
The Executive Secretary has been an important source of continuity for the Committee, which has had only seven. (See Appendix 1.) This was one of the several strengths enumerated by Dr. Ruth Puffer of the World Health Organization in comments to the 20th anniversary conference of the USNCVHS:
The new body was given a broad charge that included domestic as well as international responsibilities. An early document states, "The major objectives of the National Committee are to advise the Surgeon General on matters relating to vital and health statistics and to promote and secure technical developments in the field of vital and health statistics." This was spelled out in six areas of activity: "delineate statistical problems of public health importance...; stimulate studies of such problems...; review findings...and make recommendations for national and/or international adoption; cooperate with and advise other organizations...; advise the Surgeon General on problems relating to vital and health statistics of national and international concern; and cooperate with national committees of other countries, and with the World Health Organization and other international agencies in the study of problems of mutual interest."(6)
The Committee's first Annual Report offers a picture of health statistics in 1949-50 and some of the challenges the Committee faced:
Because several national health statistics bodies existed at that time (notably the Public Health Conference on Records and Statistics), the Committee was careful to define its purview. "The committee recognized that its primary function was to serve as an intermediary in matters concerning vital statistics and health statistics between national and international organizations.... [I]ts primary responsibility and great opportunity was to bring United States viewpoints and technical knowledge existing in...statistical fields before international bodies and organizations which might consider them and adapt them in whole or in part for broad international usage."(8)
After surveying the areas of possible activity, the founding members created working groups in the following areas: fetal mortality, statistics of the armed forces, cancer statistics, hospital morbidity statistics, and case register and medical care statistics. Except for the last, all were concerned at least partially with creating internationally comparable statistics.
Another early document adds that "the studies that support these functions are performed by subcommittees appointed to deal with specific questions, or by other organizations cooperating voluntarily with the committee."(9) Most subcommittees or working groups were composed not of Committee members but of other experts working on special projects administered by the National Committee.
The Committee thus served as the nucleus and coordinator of far-reaching work by dozens of experts. It was viewed from the outset as a technical committee a cooperative, non-governmental effort without particular authority. (This despite the fact that several federal employees served on the Committee in the early years.) In its first 15 years, the committee administered 24 investigations in 9 areas. Commenting on the committee's productivity, the group's first historian remarked,
Completing an International Mission, Shifting to a Domestic Focus
As intended, the National Committee's first 15 years were largely devoted to revisions of the International Classification of Diseases. This work consolidated the United States' earlier contribution to the shift in international statistics to encompass morbidity as well as mortality. NCVHS's recommendations between 1950 and 1964 concerned live birth and fetal death statistics, fertility statistics, illness and impairment data, the use of hospital morbidity data to study morbidity in communities, medical certification of medicolegal cases, divorce statistics, and statistics on medical economics. (See list of reports in Appendix 3.)
The Committee's first impact on U.S. health statistics began in 1950 with a call for better data on illness, followed by seminal technical work that led to the development of an ongoing National Health Survey. Since the previous (and first) National Health Survey in 1937, federal public health planners had been forced to rely on national extrapolations of local data such as the Hagerstown Survey. According to a history of the National Health Survey, "Recognizing the inadequacy of available sources and the obsolescence of existing data, the [National] Committee immediately gave its attention to the problem of obtaining adequate national morbidity statistics."(11) In 1953, the Subcommittee on National Morbidity Survey issued a report entitled "Proposal for Collection of Data on Illness and Impairments: United States." This became the basis for specific legislative authorization for the National Health Survey Act of 1955, signed into law in 1956. The bill authorized the Public Health Service to conduct a continuing survey of illness and disability in the Nation. This has developed into the National Health Interview Survey, conducted continuously by NCHS since 1957; the National Health and Nutrition Examination Survey; and other NCHS population surveys.
A 15th anniversary conference in December, 1964 marked a transition point for the Committee. Some 30 current and former Committee members and seven observers and guests spent two days analyzing the state of health statistics and considering where the Committee could make the greatest contribution. It was a propitious time for such a gathering; NCHS Director Forest Linder (later an NCVHS Chair) noted the impending conclusion of work on the 8th ICD revision, on which the Committee had worked intensively, and predicted a new stage in which the group "has a chance to look around and see with what new and challenging ideas they might want to engage themselves."(12) Dr. Robert Dyar, the Committee's Chair, began by reminding those present of the Committee's uniqueness:
The issues on which that 1964 gathering focused still have striking currency more than thirty-five years later. The meeting highlighted concerns about the dominance of administrative data and the need for data on communities, socio-economic status, internal migration, and families. Information needs around race, chronic disease, and divorce were also acknowledged. In addition, a new policy orientation with respect to health resources and services emerged out of concerns about the rising cost of health care.
Three subcommittees created in the five years that followed give evidence of a further broadening of the Committee's attention, to encompass Indian health, migration, and population dynamics. The Committee also created a subcommittee on the epidemiologic use of hospital data, heralding its long involvement with the effort to standardize hospital data.
Another anniversary observance just five years later provides an additional window into the Committee's work and the status of health statistics at the time. At the twenty-year conference held in June, 1969, NCHS Director Theodore Woolsey, a long-time friend and supporter of the National Committee, highlighted four significant accomplishments of the National Committee:
[T]he studies which led to the creation of a continuing National Health Survey; the long interest of the Committee in a classification of diseases which could be used to develop multiple causes of death statistics; the Committee's report on medical economics; and its numerous reports on fertility measurement, culminating in the recommendation of a continuing fertility survey [which the Center was unable to fund].(14)
These anniversary observances did not continue, but the Second International Conference of National Committees on Vital and Health Statistics, held in 1973 and attended by five NCVHS members, offers a useful perspective on the period. A brief history of the National Committee in the 1979-80 Annual Report draws interesting contrasts in the concept and practice of public health" in the twenty years between the First and Second International Conferences:
At the First Conference, delegates were concerned mainly with the problems of mortality and communicable disease statistics and with ways of improving the quality of these data. At the Second Conference, health survey systems were a thing of the present for meeting the needs of health administrators and health planners. Health indexes, morbidity data from household surveys, medical care records, and data on health resources, including medical manpower and facilities and health expenditures, were an integral part of those systems.(15)
In 1970, NCVHS embarked on an ambitious project that is widely regarded as its signal activity: devising and promoting the standardization of health information through uniform minimum data sets and other means. Although the vital statistics system in the U.S. was built on the idea of uniform data (e.g., uniform birth and death certificates), the principle had not yet been applied to a wide range of other health data.(16) Since 1970, progress in this area has been slow and not without obstacles a "two steps forward, one step backward" dance that continues to the present day. The ensuing years have seen many milestones: minimum data sets for hospital, ambulatory, and long-term care; recommendations on core health data elements; and, currently, a key role in administrative simplification activities. The Committees increasing consultation with private sector organizations and growing partnership with the Department have been hallmarks of these efforts. The work on standardization and the impact of the Health Insurance Portability and Accountability Act are discussed below.
A few words are in order here about the dramatic changes in the Department and their effect on health statistics in the years following the establishment of Medicare (1965). The Department of Health, Education and Welfare (later Health and Human Services) acquired most of its current size, shape and duties some 15 to 20 years after the Committee was formed. Thanks to a flexible structure and steady focus on its charge, the Committee was able to adapt its thinking and operations to this changing environment. A 1976 report on the Cooperative Health Statistics System describes some of those changes as background for the need for a national system to coordinate federal, state and local health data systems:
1974 was a pivotal year for the Committee. New legislation (the Public Health Services Act, PL 93-353, sect. 306, passed in July 1974) gave it official status as advisor to the Secretary of Health, Education and Welfare, through the Assistant Secretary for Health. Speaking as the recent Chair of the Panel on Health Services Research and Development of the President's Science Advisory Committee, Dr. Kerr White had testified in favor of this step before Senator Kennedy's Subcommittee on Health (Senate Committee on Labor and Public Welfare):
In addition to gaining statutory authority as a result of the new Public Health Act, the Committee was expanded to 15 members and given responsibility for issuing "an annual report on the state of the Nation's health, its health services, their costs, and distributions, and to make proposals for improvements of the Nation's health statistics and health information systems." Thus was launched Health, United States, published by NCHS in consultation with the National Committee. This annual report has been an important advance in the use and dissemination of health statistics a means of informing Congress and the public about the nation's health and of drawing attention to special problems. The process around the Healthy People objectives set for every decade since 1990 has been an important complementary activity in which the Committee also has had an advisory role.
The 1974 legislation embedded the NCVHS charter in the legislation for the National Center for Health Statistics, which has had primary responsibility for staffing it for most of the ensuing years and has frequently looked to it for advice. This relationship (probably compounded by the similarity of the two names) has sometimes created confusion about the separateness of the two bodies and obscured the fact that the Committee advises the entire Department. Of the various efforts to address this problem, the most effective has probably been the steady development of strong working relationships with all parts of the Department concerned with health statistics and information. Maintaining balance in these relationships is an ongoing priority for NCVHS.
The late 1970s were characterized by vigorous and productive activity by the Committee on many fronts, enabled by dozens of experts serving on Technical Consultant Panels (TCPs) under its direction. Although a preliminary version of the Uniform Hospital Discharge Data Set (UHDDS) had been devised in 1969 and recommended by NCVHS in 1972, it still was not being used. Work toward its adoption became a top priority when Dr. Kerr White became NCVHS Chair in 1975. They did not stop with hospital discharge data, however; TCPs also were established to review or develop minimum basic data sets for ambulatory care, manpower and facilities, and long-term care.(19) One byproduct of these discussions was a call by the Committee for a universal patient identification number a subject still on the national agenda twenty-five years later. The Committee also worked closely with the Cooperative Health Statistics System, an NCHS-based, federally-coordinated program to develop and standardize public and private sector health statistics capacities at the state and local levels.
In addition to working on minimum data sets and other matters through its TCPs, the National Committee took a broad look at the Department's statistical operations. Its 1977 Annual Report called for improved coordination and standardization of federal health statistics. The analysis was based on a study conducted by the Department's Health Data Policy Committee (HDPC), directed by Gooloo S. Wunderlich, Ph.D. (who became the NCVHS Executive Secretary in 1977, when the staffing function was moved to the Office of the Assistant Secretary for Health).
The HDPC report characterized the Public Health Service and other governmental data systems as "overlapping, redundant, data collection activities that place unnecessary burdens on respondents and produce volumes of expensive data that cannot be aggregated because they are not compatible." It called for "a cross-cutting, coordinated effort" that it predicted would be "extremely beneficial to filling the overall information needs for monitoring changes in the health field; making resource allocation decisions; and minimizing the public burden."(20) It also outlined a working relationship between the Health Data Policy Committee, the Department's internal advisory body, and NCVHS, "the primary outside advisory group of experts to the Assistant Secretary of Health. Such a relationship between these two advisory bodies," it continued, "should result in a balanced and strong influence in the development of systematic statistical systems and mechanisms for assuring better coordination, integration, and accountability of these systems." (21)
Hiatus and Reorganization
These productive years were followed by a period of inactivity during which the Department reevaluated the role of the Committee and cut back the Cooperative Health Statistics System. An 11-month hiatus in 1979 was followed by a brief revival in 1980 and then -although the charter was renewed and new members were sworn in- by another hiatus beginning in July 1980 and lasting for nearly two years.
A significant challenge to the Committee's mode of operation had occurred in 1979, when the Office of Management and Budget ruled that its use of Technical Consultant Panels exceeded the regulatory authority of advisory bodies. Due to budget constraints and other factors, OMB was working to reduce the number of federal advisory committees. TCPs thus ceased to operate at the end of 1979, contributing to the instability of this period for NCVHS. Nevertheless, the Committee continued its work, under the Chairmanship of Lester Breslow, M.D., with several subcommittees active in 1979-80. A milestone occurred in 1980 when the Department, with some prodding from the Committee and former members, finally endorsed the UHDDS.
The documents just preceding the long hiatus show a body eager to demonstrate its value to the Department and the health field in an atmosphere of far-reaching administrative changes and budget cuts. After quoting the Department's 1979-80 Health Statistics Plan on the need to develop coordinated and responsible health data systems, the 1979-80 Annual Report comments pointedly,
These arguments notwithstanding, the Committee was not convened in 1981 or 1982. Theories vary as to the cause of this hiatus, reflecting the different vantage points of their proponents. Through most of them comes a picture of a large, multifaceted Department struggling for balance in the wake of the dramatic changes described above (a struggle compounded by the 1977 creation of the powerful Health Care Financing Administration) and apparently questioning the need to heed an external advisory body.
Still, NCVHS provided a unique mechanism for exchanges among multiple perspectives and interests, and recognition of its ability to link government agencies, states and the private sector led to its revitalization by the Department in early 1983. The staffing function was returned to NCHS, with Gail Fisher, Ph.D. as Executive Secretary. The challenge then was twofold. The Committee's resources for carrying out projects had been drastically undercut by the abolition of TCPs, and the pause in its operations had weakened its institutional capacity and momentum. The Committee and staff thus needed to devote time and energy to finding the most effective structures and processes for fulfilling its mandate.(23)
One result of the internal analysis was the formation of an Executive Subcommittee in November, 1985. Another was the development in 1986 of a list of "Characteristics for Assessing Emerging Issues" to help guide the Committee in its choice of projects.(24) The group also set its sights on one- and two-year projects, in order to accomplish goals during members' tenure.
Despite the challenges and reduced resources faced by the Committee, these new approaches were strikingly successful. With tiny budgets and without the use of outside experts, subcommittees have been highly productive, both in their long-term projects and in the quality of their meetings. Between 1987 and the completion of its 50th year, the Committee released 59 reports and sets of recommendations, plus ten annual or multi-year reports.
It is beyond the scope of this review to discuss these reports and their impact; but an impression of the Committee's major activities in recent years can be gained from the list of reports in Appendix 3. Observers have noted that since the revitalization, due partly to the changes in the Committee's composition, NCVHS stopped doing the technical work on the issues it studied. Rather, its work became conceptual and consultative: analyzing problems, reviewing research, talking with experts and those affected by the issue at hand, and then either recommending a general approach or simply urging that a given problem be addressed. The Committee has continued to evaluate how to be most effective in its advisory role, as discussed in the final pages of this report.
The revitalized Committee regarded as critical its function as a link between the public and private sectors. It actively "strengthened its role as a voice and a representative of the private sector's interest and concerns regarding health data collection, analysis, publication, and interpretation."(25) Outreach to the private sector was motivated by growing concerns about costs, interest in health care reform, and standardization initiatives in the private sector.
Ronald Blankenbaker, M.D., the NCVHS Chair who spearheaded outreach to the Committee's non-federal constituencies between 1986 and 1991, observed in an interview that "the government needs input from the real world outside Washington." This function is embodied, of course, in the expertise and perspectives of NCVHS members people who "have distinguished themselves in such fields as health statistics, health planning, epidemiology, and the provision and financing of health services."(26)
Besides providing these links, Committee meetings are open forums on issues, where private sector representatives can interact with each other and with government representatives and, through the Committee, express themselves about public policy. The 1983-85 Annual Report describes meetings as "a forum for the discussion of frequently complex and sometimes conflicting opinions." Former Executive Secretary Gail Fisher, Ph.D., believes that the meetings serve an important educational function. For example, she has cited the work on E-codes (external cause of injury coding) that took place in the late 1980s and early 1990s. The existence of a forum for the presentation and discussion of evidence of their uses in prevention convinced many people, including NCVHS members, of their value. "One of the strengths of the Committee," she observes, "is the experience and seasoning of members, who by questioning those who testify elicit new insights, promote change, and build connections that have value for all participants." NCVHS also has been innovative in developing mechanisms for two-way written communication with the field and holding regional hearings as ways of maximizing involvement, eliciting opinion, and building consensus.
The Committee's substantive activities in the 1980s continued the earlier work on minimum data sets, with emphasis on long-term care. It also addressed critical and neglected areas of minority health and community health statistics. (See special sections on these topics.) In addition, concerns about the quality of cause of death statistics arose in 1989 and remained salient for several years. To address those concerns, the Committee developed a new approach: co-sponsoring with NCHS two national workshops on improving cause-of-death information (in 1989 and 1991) and an educational exhibit for physicians that was featured at several national professional meetings.
New Issues, New Partners
In 1988, Congress increased the Committees size to 16 and member terms to four years, thereby increasing its ability to sustain complex projects. NCVHS stepped up its efforts to facilitate communication and cooperation among levels of government and the private sector, aided by a growing recognition in all sectors of the importance of cooperation and the policy significance of health information. This new emphasis on partnership is typified by the following statement in the 1994 NCVHS Annual Report, which assumes a web of connections between the public and private sectors:
NCVHS published a special analysis in its 1990 Annual Report, entitled "The Status of Health Data and Statistics in the United States. The analysis highlighted three areas of particular concern at that time: "the need to develop baseline health data for future decisions; the growing reliance on administrative data sets for setting health policy; and the use of the Social Security Number for linking health and related data."
The third concern related to the Committee's continuing attempt to promote data linkage and its conclusion that no other mechanism existed or was forthcoming. The recommendation, which reflected the growing need for data uniformity and linkage, was made in the context of a study of personal identifiers by the Subcommittee on Health Care Statistics. That study looked at issues of linkage and the need for a consistent personal identifier across National Health Care Survey components.
The recommendation on identifiers led to an extensive review of privacy and confidentiality issues in health data. The issue had last been addressed in detail at the Committee's twentieth anniversary conference(28) - an indication of how long this problem has been both important and unresolved. Before and since that meeting, privacy issues surfaced regularly in the Committee's deliberations, generating periodic acknowledgments of the need to balance access and confidentiality and to protect individual privacy. The decision to focus on these issues led to a two-year study, culminating in a 1992 report. The Work Group on Confidentiality then recommended that the Committee turn the matter over to a monitor, deeming it unnecessary to commit more of the Committee's scarce resources because other public and private groups were devoting attention to it. Contrary to that prediction, privacy issues landed firmly on center stage for the Committee after 1996, when HIPAA heightened the need for privacy protections and assigned NCVHS an explicit advisory role in this area. The story of the work in the privacy area continues below.
The Committee's Chair from 1991 to 1996, Judith Miller Jones, brought a broad perspective and knowledge of the political mechanics of policy development that helped the Committee stay relevant to the rapid changes and uncertainty surrounding health care reform, which dominated its 1993 and 1994 agendas. Meetings began early on with high-level Departmental representatives appointed by the new President, to examine common concerns about data needs and gaps. From that point on, NCVHS witnessed a growing Departmental interest in a unified approach to health statistics, born of equal parts frustration at the lack of information in some areas, external pressure to consolidate, and ever more compelling reasons to cooperate with all those needing good health information.
With the defeat of system reform legislation in 1994, NCVHS refocused its attention on Departmental programs, the states, and the private sector, where despite the lack of legislation, change was gaining momentum. Among other things, the Committee called for mechanisms to ensure the monitoring of new modes of health care delivery and their outcomes. It also called for the protection of traditional methods of evaluating the nation's health such as national surveys.
The pace of computerization and standardization in the private sector drew the Committee into concerns about protecting key data content. By 1993, communication with the health-care industry had become a priority, and NCVHS was developing new, and evidently welcome, relationships with dynamic and fast-moving private sector organizations. Members were faced with a new stew of acronyms to learn: CPRI, HOST, ANSI, ASC X12, and others. The Committee used its voice to urge that population-based perspectives be represented at the table, to increase the likelihood that new information vehicles would permit the monitoring of health status and care for all Americans.
A special charge and funding from PHS and HCFA propelled the Committee in 1994 into a major project to evaluate common core health data sets for enrollment and health care encounters the latest stage of the longstanding effort to generate standardized health care information. This undertaking is described briefly in the thematic section below.
NCVHS observed its 45th anniversary in mid-1995 by revisiting the Committee's origins and affirming core principles. It published a 45-year history (which is incorporated in this document), and hosted a 45th Anniversary Symposium to explore and promote partnerships for better health information. This unusual pause at the 45-year mark reflected the Committee's desire to address the extraordinary changes underway in the mid-1990s in health care delivery and health information systems. Amid changes in the marketplace, in the federal government, and at state and local levels, the critical role of information was gaining recognition while the resources for infrastructure development were shrinking.
The 1995 Symposium agenda represented a broad statement of the Committee's concerns as it looked toward the next millennium. Participants examined the special data needs of community-based programs; discussed the evolving responsibilities of localities, states, and the federal government; and considered the impact of managed care initiatives, especially on primary care delivery programs. A central question was what types of partnerships were needed among public and private stakeholders to promote information for health.
The HIPAA Era Begins
1996 began a new era for the Committee, bringing a strong new mandate, a heavy workload related to administrative simplification and health information privacy, and unprecedented levels of collaboration with the Department and of accountability to Congress.
A new charter in January 1996 expanded the scope of the Committee just as nine members were completing their terms and Judith Miller Jones prepared to hand the gavel to Donald Detmer, M.D. During this transition, members engaged in a vigorous dialogue with policy-makers aimed at preserving the Committees historic mission and role while reshaping it to emerging needs. The passage of HIPAA in August heightened the sense of a new era by giving the Committee new responsibilities relating to administrative simplification and privacy, and directing the Department to consult with NCVHS as it carried out the laws directives. NCVHS geared up to carry out these responsibilities while continuing its work on many other fronts. The work on HIPAA assignments-which can only be described as a sea-change in the life of the Committee-is described in the topical section below.
In 1997, NCVHS performed many information-gathering and forum functions, some but not all related to HIPAA responsibilities. In the zone of population health, the Committee also began exploring a new advisory relationship to the National Center for Health Statistics-a dialogue that lasted nearly three years and ultimately both changed and strengthened that relationship. Together, these bodies launched a visioning process for 21st century health statistics that is described below.
1997 also marked the retirement after 14 years of service of Executive Secretary Dr. Gail Fisher. Her successor, Marjorie S. Greenberg, is the Committees seventh Executive Secretary in 49 years. As noted, the continuity of service and contributions of these seven individuals is regarded as an important reason for the National Committees effectiveness. During this period, James Scanlon of the DHHS Office of the Assistant Secretary for Planning and Evaluation became the Executive Staff Director for NCVHS, facilitating the assignment of staff to the Committee from throughout the Department.
1998 brought the completion of the first phase of administrative simplification assignments and progress on large-scale visioning projects on the future of health statistics and on the national health information infrastructure. The struggle to keep privacy protections apace with administrative simplification grew intense as the Committee began to study issues associated with a unique health identifier for individuals, as part of the HIPAA mandate. Initiatives on population-based health focused on Medicaid managed care, data on the Islands and Territories, monitoring revision of OMB Directive 15 and implementation of its successor, and data on care provided in non-conventional settings such as long-term care facilities and homes (commonly called post-acute care, or more appropriately, continuum of care). During 1998, Don Detmer handed the gavel to the Chair who would lead the Committee into the 21st century, John Lumpkin, M.D. Dr. Lumpkin is the first state public health official to head NCVHS.
Much of the Committees work in 1999 continued or laid the groundwork for projects planned to culminate in 2000 or 2001. These activities are described in the topical section below. The 50th Anniversary Symposium held in June 2000 marked both the Committees passage into its second half-century of service and the unveiling of its visions for 21st century health statistics and the national health information infrastructure. The event, which is summarized in a separate report in this volume, provided a welcome vantage point from which to view the Committees past and future as well as the needs and opportunities presented by a new century.
MAJOR AREAS OF NCVHS ACTIVITY
Population Health and Statistics on Specific Populations
The activities described below have been spearheaded by the Subcommittee on Populations. In the 1996 reorganization, this Subcommittee was assigned the responsibilities of three NCVHS precursors: the Subcommittees on Mental Health Statistics, Disability and Long-Term Care Statistics, and Health Statistics for Minority and Other Special Populations. That broad scope has remained a challenge for the Subcommittee and the entire Committee - one discussed below in the section on Suiting Form to Function.
The Subcommittee on Populations identifies priorities, strategies and opportunities for gathering data and also works to ensure attention to these priorities by the full Committee and other bodies, including the Department. Under its leadership, NCVHS has carried out important initiatives on such wide-ranging topics as race/ethnicity data, Medicaid managed care, continuum of care, quality of care, and health statistics for the 21st century. The common denominator has been the search for better data on populations whose defining characteristic-for example, age, income, health insurance status, disability, race or ethnicity-heightens their risk of experiencing poor health outcomes (e.g., excess mortality), substandard care, inadequate access to services, or other negative response from the health care system.
Minority Health Statistics
NCVHS members first discussed the severe inadequacies of health information on non-white racial and ethnic groups at its 1964 15th Anniversary Conference. Until 1986, however, the only sustained and focused activity in this area was through a Subcommittee on Indian Health Statistics (1965 to 1969). The Committee established the Subcommittee on Minority Health Data in 1986 to more systematically address the significant data gaps and inconsistencies in that area. Concerns about medical indigence resulted in 1989 in an expansion of the Subcommittee's charge and name to the Subcommittee on Health Statistics for Minority and Other Special Populations.
Illustrating the confluence of forces that precipitate change, a lawsuit filed in 1993 gave an important boost to the effort to improve race and ethnicity statistics. It charged that the Department was unable to comply with civil rights legislation because its statistics lacked sufficient detail to document the absence or presence of discrimination. Before the case was dismissed, as it ultimately was, the Department stepped up its efforts to improve its race/ethnicity data.
The Committee addressed socio-economic factors in a special 1992 report that outlined the relationships among race, ethnicity, socio-economic status, and health. The report was a product of a special NCVHS meeting on that topic at which experts testified on the potential misinterpretations of race data that can occur in the absence of information on socio-economic status. Later, in 1998, the Committee endorsed the ambitious Healthy People 2010 goal of eliminating disparities among U.S. population groups in their health status and access to prevention and care. Now its role is to help find appropriate ways to collect these data so that they can be usefully linked with healthcare and health data.
A review of Directive 15 (Racial and Ethnic Standards) by the Office of Management and Budget was a longstanding interest of the Subcommittee, working closely with the HHS Office of Minority Health. The Subcommittee submitted comments on the report of the Interagency Committee for the Review of Directive 15 in 1997, endorsing its major recommendations but expressing reservations about some aspects. It offered assistance in developing guidelines for tabulation and other technical matters, and is monitoring the implementation of the revised Directive.
State and Community Health Statistics
As with minority health statistics, the problem of inadequate state and community statistics was acknowledged for many years before being institutionally addressed by the Committee. A subcommittee was created when two things coincided: the issue took on special urgency, and the right leadership was available to head up an organized effort.
The Subcommittee on State and Community Health Statistics was formed in 1991 on the recommendation of a work group on community health statistics. Unlike the aforementioned subcommittee, this one had a long lineage prior to its formal establishment. State and local statistics were first addressed in the context of the Cooperative Health Statistics System, described above. In the 1980s, the explosion of HIV/AIDS and the Department's development of Healthy People Objectives for the Year 2000 focused the nation's attention on prevention and the need for local data. NCVHS addressed both issues from 1985 to 1988 through the Subcommittee on Data Gaps in Disease Prevention and Health Promotion and another similarly named Subcommittee (see Appendix 2).
The first report of the Subcommittee on State and Community Health Statistics, issued in 1993, explored the gaps in state and community health statistics. A major recommendation was that the Department strengthen state centers for health statistics as a way of using existing resources to enhance the national information infrastructure. NCHS staff member Mary Anne Freedman, who served on the National Committee before joining NCHS, staffed the Subcommittee and helped prepare its 1993 report. She has observed that while the recommendations were well thought-out and have merit, they require resources to implement and must compete with other Departmental priorities. They may therefore share the fate of other NCVHS recommendations that simply "sit on a Department shelf."
The Standards Subcommittee took on the portfolio of the Subcommittee on State and Community Health Statistics in the 1996 reorganization. As part of the ongoing campaign to strengthen state and local health statistics, the following year the full Committee approved recommendations concerning community health assessment and the respective roles of state health agencies and the federal government in facilitating the assessment process. This report was sent not only to the Secretary but also to the Association of State and Territorial Health Officials and the National Association of County and City Health Officials for their consideration.
Disabilities, Mental Health, Long Term Care
Long-term care appeared on the NCVHS agenda in 1975 when work began on the long-term care minimum data set. The Subcommittee on Long-Term Care Statistics was established in 1987 and renamed the Subcommittee on Disability and Long-Term Care Statistics in 1994. Along with mental health, this subject area became an important mechanism for broadening the Committee's purview: beyond acute and institutional care, beyond a medical model of health, and even beyond the health care field to other service arenas. Before its domain was assigned to the Subcommittee on Populations, this Subcommittee issued a series of reports on data needs and gaps in respect to long-term care.
The Subcommittee on Mental Health Statistics, created in 1990, often worked in tandem with the one on Long-Term-Care. In its short life, this group made a mark on health statistics. Its recommendation that a mental health measure be added to the National Health Interview Survey was endorsed by NCHS in 1992, and in 1994 the National Institute of Mental Health accepted its recommendation to include a national probability sample of the U.S. child population in the 1996 Child Epidemiological Catchment Area (ECA) Study.
In 1999, the Subcommittee on Populations launched a study of the feasibility of incorporating functional status as a standard element on administrative (encounter) health records, and in particular the appropriateness of the International Classification of Functioning, Disability and Health (ICIDH-2) as a potential means of coding such data.
Medicaid Managed Care
Also in 1999, the Populations Subcommittee completed a two-year review of the data implications of the large-scale shift of Medicaid beneficiaries into managed care. The Subcommittee was motivated by two chief concerns: that the continuity of information on Medicaid beneficiaries was threatened by the limited data-collection practices of managed care organizations; and that data gaps would make it difficult to monitor the quality of care beneficiaries receive. After holding hearings in Washington, D.C., Massachusetts, and Arizona, the Subcommittee issued a report recommending ways to improve data collection to permit evaluation of the impact of managed care on the health of Medicaid enrollees and their access to and use of health care services.
Islands and Territories
The same year, NCVHS approved and transmitted to the Department a report containing recommendations on health data needs and issues in the U.S.-associated insular areas (Puerto Rico, the Virgin Islands) and Pacific Islands. The Subcommittee based its report on findings from a two-day meeting with representatives from the islands and territories.
Care across the Spectrum of Settings
A series of activities in this area began in the mid-1990s when the Subcommittee raised questions about HCFAs plan to mandate the use of the Outcome Assessment Information Set (OASIS) by home health agencies. NCVHS recommended that HCFA review all data collection initiatives concerning the continuum of care with the goal of having consistent data collection methods. Two Subcommittees, on Populations and on Standards and Security, then met with HCFA to consider data requirements for such care. NCVHS sought to work with HCFA and the Department to develop a coherent data policy that focuses on patients attributes rather than specific features of settings of care. However, HCFA went on to promulgate OASIS.
NCVHS stays in touch with the organizations created in 1999 to carry out the recommendations of the Presidents Advisory Commission on Consumer Protection and Quality in the Health Care Industry. It created the Work Group on Quality in 1998 as part of the Subcommittee on Populations, to coordinate work on this subject that is of longstanding interest to the Committee. An early focus was data on the quality of care in the spectrum of settings and data on the quality of managed care for Medicaid beneficiaries.
Privacy and Confidentiality
NCVHS has long recognized that the information platform for health care and health policy must have as its cornerstone strong measures to protect individual privacy. Promoting the linkage between these two has been a major NCVHS commitment in recent years, but it is not new to the Committees work. For example, its recommendations about uniform data sets have from the beginning emphasized privacy protection as a critical precondition.
The challenges to privacy, and thus to the Committees work, became more pronounced with the enactment of HIPAA, as outgoing Chair Judith Miller Jones observed in a prophetic statement in her Foreword to the 1995 Annual Report:
Once charged by HIPAA with moving ahead on administrative simplification, the Committee accorded privacy protection greater salience by giving it full Subcommittee status for the first time. That Subcommittee held six days of public hearings in 1997 and several roundtable discussions in 1998, providing a forum for a spectrum of views on privacy and confidentiality issues in research, law enforcement, marketing, health services, and other activities.
Recommendations to the Secretary
The Subcommittee worked closely with the Departments Privacy Advocate to develop the NCVHS and HHS recommendations on privacy and to monitor the responses to them. The Committee issued a major report in June 1997, recommending that the Department and Administration assign a high priority to developing a strong position on health privacy. The report further recommended that the 105th Congress enact a health privacy law prior to the end of its 1998 session. Secretary Shalala echoed these recommendations in her September 1997 testimony to Congress. The Committee Chair testified before the House Ways and Means Committee on March 24, 1998, and the Committee continues to closely track proposed legislation.
When 1998 ended without passage of federal privacy legislation, NCVHS began laying the groundwork for privacy regulations to be promulgated by the Department, as directed by HIPAA, and then submitted comments after the proposed regulations were released in late 1999.
The Committee continues to urge that strong national privacy legislation be passed without further delay, even in the presence of administrative regulations.
The Privacy Subcommittee held a roundtable discussion in [YEAR] on health and medical registries with participants from interest and advocacy groups, government, for-profit and non-profit organizations, the health care industry, the research community and academia. On the basis of that discussion, the Committee recommended to the Secretary that health data be provided only to registries that conduct research, public health, and related activities. It also cautioned that legislation should not undermine the flow of health information into or out of such registries.
After hosting a roundtable on identifiability, the Committee submitted 1999 recommendations to the Secretary that include the caveat that everyone who collects and uses health data should pay attention to and continually evaluate the likelihood that as technology develops, data once believed to be non-identifiable may at some point lose that status. The recommendations state that institutional review boards, in particular, should be alerted to this issue.
Fraud and abuse
The Subcommittee sponsored a roundtable discussion with industry investigators in mid-1998, beginning a study of the issue of balancing health data confidentiality and the need to investigate and control health care fraud and abuse.
Review of Health Information Privacy Model Act
In late 1998, the Subcommittee was briefed by the National Association of Insurance Commissioners about the organizations Health Information Privacy Model Act. It sent a letter to the Association and each of the 55 Commissioners in 1999, stating its concerns about the proposed model legislation.
Former Chair Kerr White, M.D., has spoken of the Committee's desire to help create a seamless web of information on health and health care. The often-overlooked distinction between data and information is critical to this process, as his contemporary NCVHS member James Cooney, Ph.D. makes clear in a 1980 discussion paper:
Promoting the standardization of health information to remedy this situation has been a consistent and defining NCVHS activity since 1970. The campaign was spearheaded originally by NCVHS Technical Consultant Panels (TCPs) and other subcommittees, after 1987 by the Subcommittee on Ambulatory Care Statistics (which in 1989 became the Subcommittee on Ambulatory and Hospital Care Statistics), and since 1996 by the Subcommittee on Standards and Security. The Committees efforts have been, and continue to be, aimed at achieving comparability in the health data collected by federal agencies, states and localities, the private sector, and the international community. Uniform, comparable standards are needed across geographic areas, populations, systems, institutions and sites of care, to maximize the effectiveness of health promotion and care and minimize the burden on those responsible for generating the data. To this end, the Committee has advised the Department on such matters as federal-state relationships, and core data sets, as well as nomenclatures and classification systems and access and confidentiality issues.
The role of the Committee has, in fact, been crucial, because by its very nature standardization involves many parts of the Department and other players outside the federal government who need an overarching and disinterested body to facilitate the process. Descriptions of the major NCVHS standardization activities follow.
Uniform Hospital Discharge Data Set
The first U.S. attempt at data uniformity outside vital statistics began in 1969 with an historic conference at Airlie House in Virginia that brought together an international group of public and private users and providers of information on short-stay hospital inpatients. The meeting generated a request that NCVHS develop a uniform minimum data set for hospital discharges. The idea of collecting uniform hospital data was first advanced a century earlier, by Florence Nightingale. Following the Airlie House conference, an NCVHS subcommittee was appointed for this purpose in 1970. It issued its final report in 1972, and its criteria for inclusion or exclusion of a data item from the minimum data set were adopted. (They were later broadened for generic use, picking up the Airlie House vision of linkage among multiple data sets.) The first Uniform Hospital Abstract Minimum Data Set was published in 1973 after extensive field test and study. While not endorsed as Departmental policy until 1980, it was endorsed by several key national organizations in the private sector.(31)
The UHDDS concept underwent little further development until 1975, when NCVHS established a TCP to review the original recommendations in the light of current and rapidly changing needs for discharge data. The Committee endorsed the results of that review in 1979 and forwarded it to the Department. Its report on the UHDDS was published in 1980. The revision, further revised by DHHS's Health Information Policy Council, was published by the Department on July 31, 1985 and became effective on January 1, 1986.
Systematic revision activities continued for several years. The Committee
recommended a revision of the 1984 UHDDS to the Department in June, 1992; an interagency task force made its recommendations for a revised UHDDS on May 1993; and NCVHS commented on those recommendations in July, 1993. The Committee incorporated these recommendations into its 1996 core health data report (see below), which as of this writing are still under review by the Department. Many of the elements are present in the standard transactions now used by the Department and industry.
In 1991, the Committee made an important contribution to the use of hospital data in the area of external cause of injury codes (E-codes). After becoming convinced of the merits of E-codes for prevention efforts, the Committee's representatives attended a series of meetings of the National Uniform Billing Committee and were able to convince them to add a space for E-codes on the new Uniform Bill for Hospitals (UB-92). The Committee also recommended that E-codes become an element of the UHDDS.
The UHDDS was the flagship in what was envisioned as a fleet of minimum data sets covering ambulatory care, long-term care, health manpower, and health facilities collectively called the Uniform Minimum Health Data Set (UMHDS). (There was no effort to link the data in these data sets.) In addition to hospital care, NCVHS has concentrated on ambulatory care and long-term care.
According to Marjorie Greenberg, who has staffed the Committee since 1983 and served as Executive Secretary since 1997, "The UHDDS and the UACDS [see below] are considered de facto standards by federal agencies, states, and much of the private sector collecting data on hospital discharges and ambulatory encounters." (32)
Ambulatory Care Minimum Data Set
A Conference on Ambulatory Care Data was held in 1972, resulting in the formation of an NCVHS Technical Consultant Panel in 1973 to identify data elements for a uniform minimum data set on ambulatory care. The Committee approved the recommended Ambulatory uniform minimum data set in 1974, and a TCP continued work on the data set during Dr. Kerr White's tenure. The data set was reviewed in 1987, and NCVHS and an Interagency Task Force jointly recommended a revision in 1989. For several years, the 1989 iteration of the UACDS served as a de facto standard in the field. The Committee reviewed the UACDS again in 1993, and transmitted its findings and recommendations to the Department in July 1994. It recommended several enhancements, but concluded that the 1989 UACDS is basically sound. The data set has been widely disseminated and well received in the private sector. As with the UHDDS, the elements were incorporated into the NCVHS core data recommendations in 1996.
Long-Term Care Minimum Data Set
A conference on Long-Term Health Care Data was convened in 1975. That meeting fulfilled the vision of the Airlie House conference by taking a similarly broad view of the uniform minimum health data set. It recommended to the Department that
Later, however, the Long-Term Care MDS was "eclipsed by the Minimum Data Set for Nursing Facility Resident Assessment and Care Screening, mandated by the Omnibus Budget Reconciliation Act of 1987 and implemented by HCFA in 1991."(34) (15) NCVHS published reports on a long-term care minimum data set in 1980 and 1987. The Committee has followed the development of the nursing facility and resident assessment MDS and provided advice on data quality and computerization.
Cooperative Health Statistics System (CHSS)
The CHSS was established in 1974 by the same landmark legislation (PL 93-353) that formalized the status of NCVHS and NCHS and that called for an annual report on the nation's health. Until the program's reduction in the mid-1980s, the Committee worked closely with the CHSS Advisory Committee and with NCHS, serving briefly in 1980 as the CHSS advisory body. The CHSS was designed to facilitate the development and maintenance of shared data systems to meet multiple purposes. It was essentially voluntary, moving toward agreements between federal, state and local public and private agencies. It addressed the priority needs of health planning agencies and public health while recognizing the need to progressively use the extensive administrative health record systems that were rapidly developing. It was concerned with the proper balance between legitimate access to data and protection of privacy and confidentiality, and it worked collaboratively to develop model state legislation for these purposes.
Core Data Elements
The need to standardize data definitions and transmission was one of the few things on which the national health care reform debate of the early 1990s produced agreement. This led to a new opportunity for NCVHS to promote administrative simplification and improved care management. In late 1994, HCFA and the Office of the Assistant Secretary for Health charged the Committee with helping to identify common data needs for enrollment and encounter, thus helping policy makers, payers, administrators and providers to improve delivery and quality assurance performance measures. The goals were identified as better information on the characteristics of individuals and populations through the enrollment process, and greater knowledge about health care encounters. The Department's request recognized the Committee's long experience with minimum data sets and its concern about data reliability, validity and the burden of collection.
Its charge was, in effect, to provide advice and leadership through consultation, listening and partnership the essence of the Committee's historic role, and increasingly the role of the federal government. To fulfill this charge, the Committee consulted widely with those in the public and private sectors with direct experience with the issue.
The Committee concluded the two-year project in 1996 after an extensive survey of the health field about data-collection practices, together with interaction with HCFA and other bodies also working on core data sets. The bulk of the project focused on ambulatory and hospital settings, but NCVHS subcommittees also considered additional data elements that relate to the areas of mental health, substance abuse and long-term care. The 50-page final report specifies 42 data elements that it proposes for standardization. Of these, it calls special attention to six for which "no consensus currently exists concerning appropriate or feasible definitions"- namely, personal unique identifier, self-reported health status, functional status, type of encounter, current or most recent occupation and industry, and patient's stated reasons for visit or chief complaint. The Committee urged the Department to give high priority to further development of these elements. In addition to the Population Subcommittees work on functional status, described above, the Committee is monitoring the implementation of these recommendations, particularly those requiring further research and evaluation.
HIPAA and Its Impact
In the 1990s, the health care industry increasingly took the initiative in bringing about forms of standardization important to its broadly defined business functions. Thus one NCVHS activity in the mid-1990s was maintaining communication with these standards development organizations, following their activities, and offering input based on its own priorities. An important emphasis was, and is, the content of data to be transmitted, in order to ensure that the transmission medium does not constrain the key messages. Finding ways for public health interests to participate in standards development has been a related concern.
The 1996 Health Insurance Portability and Accountability Act mandated that the Committee advise the Department on health data standards in the following areas: ten administrative and financial transactions, including claims attachments; identifiers for payers, providers, employers, and individuals; code sets and classification systems; security safeguards; electronic signatures; privacy; and the electronic medical record.
The progress in these complex activities is reported in detail in annual reports on HIPAA implementation that Congress has required since 1997. This reporting requirement and the two Congressional appointments since 1996 have brought NCVHS into a new, more direct relationship with Congress. The Committee has welcomed the heightened Congressional interest in its work and the opportunity to report directly to it.
The HIPAA mandate, which came on the heels of the core data elements recommendations, broadened the Committee's attention to the information needs of all health programs across the nation, both public and private. The legislation emphasized the use of standards developed by accredited standards-setting organizations, wherever possible, rather than ones exclusively developed by government or quasi-governmental bodies. The mandate of necessity shifted the Committees focus, at least in the short run, from data content to electronic transactions. The sheer volume of responsibilities assigned to NCVHS in order to advise HHS in this area has made it difficult for the committee to sustain its work on population health information needs, a concern discussed further below.
HIPAA set in motion a strenuous process whereby the Committee, led by the Subcommittee on Standards and Security, held hearings to consult with industry, offered recommendations to the Department on the development of Notices of Proposed Rule Making (NPRMs), and commented on the published NPRMs, working closely with HHS implementation teams. The Committee also has supported outreach to the public health and health services research communities, to ensure that they understand the implications of HIPAA for them and are present at the table as decisions are being made. A November 1998 workshop on this subject, supported in part by the Committee, affirmed the potential benefits of administrative simplification for public health and research purposes and the need for these sectors to be part of the development process. The workshop led to formation of the Public Health Data Standards Consortium.
Unique Health Identifier for Individuals
The Committee has spoken out for many years on the need for a unique health identifier, while also stressing security and confidentiality protections as a precondition. The 1996 core data elements recommendations, developed prior to the passage of HIPAA, state that "agreement on a unique personal identifier has been recognized as a key element to the successful establishment of core data elements and their use." The NCVHS recommendations advise the Department to "support the formation of a public-private working group to conduct research and provide recommendations in this area." (35)
This issue took on greater urgency when HIPAA imposed a timetable on the Department for deciding on a unique identifier, in consultation with the Committee. For about two years the individual health identifier commanded a great deal of attention and care by the full Committee and two of its Subcommittees (Standards and Privacy), due both to its complexity and to public concerns about real or perceived threats to confidentiality. NCVHS launched its heightened advisory role in this area by commissioning a white-paper analysis of options for the identifier. Then in 1997, with no privacy legislation in sight, the Committee took the unusual step of declining to comply with a HIPAA directive, recommending to the Secretary that it was premature to select a unique health identifier for individuals until security and confidentiality issues are resolved by Congress.
The Committee hosted a public hearing on the individual health identifier in mid-1998, but soon thereafter suspended all work in this area pending the passage of national privacy legislation.
Computer-Based Patient Records
Beginning in the early 1990s, the Committee was regularly briefed by such groups as the Computer-based Patient Record Institute and the Medical Records Institute on progress toward the computer-based patient record (CPR). NCVHS created its own CPR Workgroup in 1998 to develop HIPAA-mandated recommendations and legislative proposals on uniform data standards for patient medical record information and its electronic exchange. The Workgroup held a series of hearings that led to recommendations to the Secretary that the Committee approved on the morning of its 50th Anniversary Symposium. In its report, the Committee signaled its intent to recommend in 18 months specific standards for consideration and adoption by the Secretary through the rulemaking process.
Medical Nomenclature and Classification
Classification projects have been a staple of the NCVHS agenda since its inception in 1949. As noted, the International Classification of Diseases was its major focus for the first 15 years, through the completion of the 8th revision. Complaints from medical groups about the non-inclusive process used for the 9th revision led NCVHS to return to this issue in 1983, in anticipation of the 10th revision. Chairman Robert Barnes, M.D., used the Committee as a forum for input from the field, thus demonstrating the value of the newly revived National Committee. Former NCVHS member William Felts, M.D., an active participant in the process, has described the NCVHS role as strategic and successful:
Medical opinion was not unanimous about the 10th revision process for the ICD. Kerr White, M.D., appeared before the Committee at a 1983 hearing to urge on behalf of primary care physicians "that the ICD-10 revision process be delayed several years to enable restructuring of the classification to accommodate the International Classification of Primary Care (ICPC)."(37) Although this request was denied by the World Health Organization, the Committee has stayed abreast of the development of ICPC, which along with other primary care classifications was receiving growing attention by the mid 1990s.
Bruce Steinwald, who chaired the Subcommittee on Medical Classification Systems from 1993 to 1996, jokingly described its stance toward ICD-10 at that time as one of "eternal vigilance." That vigilance resulted in a successful request that the Department evaluate the system's applicability for morbidity purposes, along with expressions of concern about the serious NCHS staffing shortages and their implications for ICD-10 implementation.
Since then, NCVHS has been regularly briefed by NCHS and HCFA representatives (including the co-chairs of the ICD-9-CM Coordination and Maintenance Committee) about the transition from ICD-9 to ICD-10 for mortality coding, and about the development and testing of the clinical modification for diagnostic coding (ICD-10-CM) and a new procedure classification system (ICD-10-PCS) to replace ICD-9-CM, Vol. 3. In addition, the American Medical Association has briefed it on CPT.
The Committee co-hosted a 1993 hearing on revising the International Classification of Impairments, Disabilities and Handicaps (ICIDH), thereby giving brief attention to another international classification system and making the Committee's forum capabilities available to the disability community. Following that meeting, the Committee decided that limited resources made it impossible to take a more active role with the ICIDH. The Committee resumed activity in this area in late 1999 with its project on functional status, described above.
The Committee has for years been planting seeds for a single procedure classification system, in hopes that they will eventually bear fruit. The subject was an area of intense activity for the Subcommittee on Medical Classification Systems. In 1983 and again in 1986, NCVHS called for "strong efforts" to develop a single procedure coding system for the United States, to replace the use of Volume 3 of ICD-9-CM in hospitals and the American Medical Association's CPT-4 in ambulatory settings.(38)
Then in 1992, the same Subcommittee "undertook anew a review of procedure classification, [seeking] advice from a wide range of organizations and individuals who have a stake in procedure classification."(39) This involved an extensive communication process using mailed surveys and meetings, by which NCVHS elicited information and opinion from the field. The investigation resulted in a 1993 report, approved by the full Committee, recommending development of a single system. In 1994, HCFA informed the Committee that it would continue its efforts to modify Volume 3 of ICD-9-CM while continuing to use the HCFA Common Procedure Coding System (HCPCS) for physician and ambulatory reporting. (The HCPCS is based on CPT-4 and has been augmented for non-physician services.) Subsequently, the AMA appointed an Exploratory Committee to consider the longer-term future of CPT, an evaluation in which NCVHS participated.
In 1997, the Committee recommended the continued use of current code sets for diagnosis and procedure coding until replacements are ready (2001 or thereafter). It also encouraged the Department to advise industry to build and modify their information systems to accommodate a change to ICD-10-CM diagnostic coding in the year 2001. Finally, it recommended a major change by the year 2002 or 2003 to a unified approach to coding procedures, yet to be defined.
Visioning Projects: Using Information for Population Health
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 are expected to generate detailed Vision statements in 2001: a vision for 21st century health statistics and a vision for the National Health Information Infrastructure (NHII). Each has produced an interim report, included in this volume. These reports were the centerpiece of the 50th Anniversary Symposium, hosted by the National Academy of Sciences in the Committees honor in June 2000.
NCVHS launched the NHII initiative in 1997 and published a concept paper on it in 1999 after presenting it to the Data Council. 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 networks 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 networks and activities more efficiently and to identify critical gaps.
The 21st Century Health Statistics Vision initiative began in 1999 under the joint auspices of NCVHS, NCHS, and the HHS Data Council, in response to a 1997 request by NCHS Director Ed Sondik, Ph.D. The coordinators sponsored 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 was 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 together with suggestions for its use in program planning and criteria for evaluating future health statistics systems.
One of the anticipated benefits of these closely related endeavors is that the interconnections 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 clarified. This should help the Committee coordinate what Chairman John Lumpkin calls the left and right brains of its work-medical 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 as part of an international movement.(40)
Suiting Form to Function
The National Committee has worked hard to ensure that its internal structure reflects and serves the full range of its priorities. As noted, questions of structure and process came to the fore in the 1980s; and the changes in 1996 again stimulated a study-still underway-of the conceptual and organizational structures best suited to both new assignments and ongoing commitments.
In 1996, the Committee created the Subcommittee on Health Data Needs, Standards and Security (later renamed the Subcommittee on Standards and Security) to spearhead the standards-related duties assigned by HIPAA. A Subcommittee on Privacy and Confidentiality was established to work on privacy issues within and beyond HIPAA. The new Subcommittee on Populations was given the portfolios of three former NCVHS subcommittees, representing a daunting array of population-related issues and a large and varied set of constituencies.
The challenge posed by HIPAA has been not simply the volume of work required in a very short time, but more importantly how to prevent the eclipse of longstanding NCVHS priorities related to population health. Members have labored to ensure that standards will enhance information for the publics health and not be an end in themselves or beneficial only to a few. In the Committees estimation, however, the effort has not been fully successful. For example, in a recent stock-taking session, Populations Subcommittee Chair Lisa Iezzoni, M.D., observed that the populations issues, the survey issues, the minority health issues, mental health, acute care . . . all of these kind of issues have not received the attention they received under the prior organization of the Committee.
NCVHS thus entered its fifty-first year looking for better ways to align the Committees structure with its own priorities and those of the Department, particularly in order to more effectively address health disparities in the U.S. population, which the Department has identified as its top priority.
This effort was foreshadowed by statements by both John Lumpkin and Don Detmer (the present and former Chairs, respectively) at the time of the 50th anniversary, to the effect that NCVHS must build on and strengthen its historic commitment to promoting health for the entire population. Executive Secretary Marjorie Greenberg points out 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 as a whole will benefit from infrastructure investments.
An Evolving Concept of Advising
The years since HIPAAs enactment have seen an unprecedented level of collaboration between NCVHS and the Department of Health and Human Services which it advises. One compensation for the extraordinary work load delivered by HIPAA is that the legislation requires HHS to consult NCVHS. This has resulted in more structured and formalized mechanisms for collaboration, facilitated by the HHS Data Council and sustained through regular consultation and participation in each others meetings. These developments have shown that the Committee can have a real impact on health information policy.
This has not always been the case-perhaps because the Committees advisory role sometimes calls for a more challenging stance toward Departmental policy. It is noteworthy that neither the NCVHS campaign for a unified system of procedure coding nor its effort to encourage a comprehensive approach to data on the continuum of care has produced visible action by the Department. And as this report is written, the Committees carefully wrought recommendations on Medicaid managed care seem to have met a similar fate. Nor was the Committee invited to help develop the HHS privacy regulations, prompting Privacy Subcommittee Chair Kathleen Frawley to remark that the Department is not utilizing the expertise of Committee members.
Still, the relationship between NCVHS and the Department today is markedly more productive than in times past. Interviews for the 45 year history, for example, revealed a sense of frustration among some NCVHS members and close observers about the Committees impact. Former member William Felts, M.D., shared this conclusion from his broad experience: "In general, government advisory committees are intentionally placed in postures of weakness. Government tends to hear the advice with which it agrees and to tune out that advocating another position." Gooloo Wunderlich, Ph.D., former NCVHS Executive Secretary and a 30-year Department veteran, responded that frustration is inherent in the advisory role: "It is natural for advisory bodies to want all their recommendations implemented. It's also natural . . . for the government to take some and leave others."
The Committee's work on standardization over thirty years typifies such variations. NCVHS has sometimes been an expert consultant whose advice is sought and followed, sometimes a stimulating forum for exploring issues and airing views, and sometimes a critic of the Department's actions or inaction. Often it has juggled a combination of these roles. In so doing, it has sometimes been the prime mover, sometimes been a partner with the federal government and/or private sector organizations, and sometimes looked on from the sidelines, struggling to be heard.
Of course, even when the Committee's advice is taken, the process is often slow and circuitous. Former member James Cooney, Ph.D., shepherded the UHDDS for the twelve years between its initial formulation and its ultimate approval as Department-wide policy. He lamented that nine of those years were "wasted" on battles within the Department over the minimum data set. He also put this behavior in perspective, however, noting that the Committee needs to be ten years ahead of the field. In addition to the simple influence of inertia, which is great in any institution, no significant change is implemented without pain, because it has a cost administrative reorganization, new technology, staff training, and so on. This in itself suggests tension and almost inevitable frustration for an advisory committee.
In that vein, many observers note the Committee's role in drawing attention to issues and providing a forum for legitimizing and reinforcing new ideas. A synergism exists between NCVHS and forward-looking people in the Department who can use it as a vehicle for getting their ideas on the table. The Committee can support fledgling efforts that have merit, as well as tempering those that do not. Strengthening the international orientation, challenging the Department to develop a more integrated information strategy, and posing questions about how the entire population will benefit from infrastructure investments are contemporary examples of such leading-edge ideas.
It would seem, then, that serving effectively and deriving satisfaction as a federal advisory committee requires a fairly broad, and evolving, definition of advisory. The Committee's working definition has evolved considerably over its 50 years, and it will no doubt continue to do so. Advising is largely a collaborative process based on reaching out in many directions to consult and include stakeholders from many sectors. Increasingly, the Committee's advisory role resides in facilitating dialogue and multilateral partnerships among the many players in the health field-Department agencies, Congress and its staff, states, localities, researchers, professional associations, trade groups, health care providers, payers, and other interdisciplinary and advisory bodies-and then reporting what it hears in a way that is relevant to Departmental policy. This is the case for the advisory role mandated by HIPAA.
NCVHS meetings are an important part of the process, in which members chosen for their experience and perspective interact with invited guests and audience members to delineate issues and identify possible solutions. Besides inviting a range of voices to its table for special hearings, the Committee provides opportunities for public comment at every meeting. NCVHS meetings typically have an audience of 50-80, representing an array of public and private stakeholders in the health arena. The meetings are also broadcast on the Internet, and minutes are sent to some 1100 individuals and organizations. The NCVHS website, which stores all its documents, has greatly widened public access. Besides connecting the Department to the outside world, NCVHS fosters collaboration among Federal agencies and departments. It is significant that by 1999, some fourteen agencies were providing staff to NCVHS Subcommittees and Work Groups in addition to the official HCFA and AHRQ (formerly AHCPR) liaisons to the full Committee.
Because of the respect for the consistently high quality of its analysis and recommendations, the Committee's advisory role and its influence extend beyond the federal government to other levels of government and to the private sector. Accordingly, former Chair Kerr White, M.D., has remarked that the NCVHS impact should be assessed outside the context of the political process: "Influence is much more important than power, in many ways. The Committee should strive to influence the situation. It will never have the legislative power to enact and enforce, but it does have the power to influence."
NCVHS has used the two visioning projects described above to engage its varied constituencies around the country in conversations about the future of health information and health statistics and their use in improving the populations health. The Committees fiftieth anniversary symposium in June 2000 provided an opportunity for public feedback on the two projects and their interim reports (published in this volume).
Both were well received. The invited commentators praised NCVHS for launching the projects, supported their conceptualization and execution, and urged prompt action and strong federal leadership to implement the visions. Participants seized upon Don Detmers metaphors and called for a roadmap, a designated driver, and a budget to bring the information strategies into being. The Symposium summary, also published in this volume, provides further information on the meeting.
Later that summer, the NCVHS Executive Subcommittee and senior staff held a strategic planning retreat at which they articulated the Committees mission and purpose, clarified priorities, delineated NCVHS roles and audiences, and discussed organizational concerns such as those outlined above. This activity is really an extension of the NCVHS visioning process, aimed at clarifying a vision of the Committee itself and its role in a new century. The strategic planning exercise will continue, working toward a vision and plan that place all NCVHS responsibilities in the context of the Committees mission-to advise on shaping a national information strategy for improving the publics health.
The Committee approaches these priorities with limited resources of time, money and staff. Members give enormous credit for the Committee's accomplishments to the outstanding support work of its superb and dedicated staff. The relatively small size of the staff is always a factor in decisions about what can be undertaken. Similarly, the size of the Committee itself is a constraint, together with the conflicting demands on members' time. Having been selected for NCVHS membership because of their professional accomplishments and involvements, they cannot set them aside while they serve on it. Even with a ten-percent time commitment to Committee service, members must make difficult choices about what projects to take on.
In view of these mounting challenges and limited resources, the Executive Subcommittee is developing a strategic approach to advising. Members agree that an overarching goal in coming years will be to promote greater alignment between the national strategies for health and for health information. Related goals are to strengthen the Departments commitment to an information strategy and to strengthen the Committees advisory relationship to the Department. Discussions at the 50th anniversary symposium stressed the need for strong federal support of NHII development, which among other things should enhance the possibility of high quality health care, an issue that came to national attention in a recent Institute of Medicine report on medical errors. Both members and former members also hope the Department will increase its involvement in the international arena.
The following individuals were interviewed for the 50-year history and/or the 45-year history that was published in 1996 and is now incorporated within this report:
Chairs and Executive Secretaries, 1949-1999
Subcommittees, Technical Consultant Panels, and Work Groups
Reports and Letters
1996-1999 (listed in reverse chronological order)
1949-1996 (listed in chronological order)
Statistics Needed Concerning Fertility. Vital Statistics-Special Reports; vol 33 no 11. 1952.
Major Problems in Fetal Mortality. Vital Statistics-Special Reports; vol 33 no 13. 1952.
Proposal for Collection of Data on Illness and Impairments. Public Health Service. Pub no 333. 1953.
Using Hospital Morbidity Data to Study Morbidity in Communities, Hospital. vol 27 no 9. 1953.
Recommendations for the Improvement of Fetal Death Statistics. Public Health Reports; vol 70 no 11. 1955.
Progress in Development of Fertility Statistics and Population Estimates. Vital Statistics-Special Reports; vol 39 no 8. 1956.
Report on the Possibility of Measuring Positive Health. DHEW Document no 261; Pos. Health 1. 1958.
Fertility Studies Based on Data for the 1960 Census Period. Vital Statistics-Special Reports; vol 47 no 5. 1960.
Final Report of Subcommittee on the Quantification of Wellness. DHEW Document no 343; Quantification of Wellness 9. 1960.
Medical Certification of Medicolegal Cases. Public Health Service. Pub no 810. 1960.
Improving National Divorce Statistics Vital Statistics-Special Reports; vol 47 no 13. 1962.
United States Statistics on Medical Economics. Public Health Service. Pub no 1125. 1964.
Fertility Measurement. Public Health Service. Pub no 1000; series 4 no 1. 1965.
National Vital Statistics Needs. Public Health Service. Pub no 1000; series 4 no 2. 1965.
Report of the Fifteenth Anniversary Conference of the United States National Committee on Vital and Health Statistics. Public Health Service. Pub no 1000; series 4 no 4. 1966.
History of the United States National Committee on Vital and Health Statistics, 1949-64. Public Health Service. Pub no 1000; series 4 no 5. 1966.
Use of Vital and Health Records in Epidemiologic Research. Public Health Service. Pub no 1000; series 4 no 7. 1968.
Migration, Vital, and Health Statistics. Public Health Service. Pub no 1000; series 4 no 9. 1968.
Use of Hospital Data for Epidemiologic and Medical-Care Research. Public Health Service. Pub no 1000; series 4 no 11. 1969.
Report of the Twentieth Anniversary Conference of the United States National Committee on Vital and Health Statistics. Public Health Service. Pub no 1000; series 4 no 13. 1970.
Needs for National Studies of Population Dynamics. Public Health Service. Pub no 1000; series 4 no 12. 1970.
Uniform Hospital Abstract: Minimum Basic Data Set. DHEW Pub no (USM) 73-1451; series 4 no 14. 1972. Reprinted as DHEW Publication no (HRA) 76-1451.
Ambulatory Medical Care Records: Uniform Minimum Basic Data Set: A Report. DHEW Pub no (HRA) 75-1453; series 4 no 16. 1974.
The Analytical Potential of NCHS Data for Health Care Systems: A Report. DHEW Pub no (HRA) 76-1454; series 4 no 17. 1975.Statistics Needed for Determining the Effects of the Environment on Health: A Report. DHEW Pub no (HRA) 77-1457; series 4 no 20. 1977.
Uniform Ambulatory Medical Care Minimum Basic Data Set. DHEW Pub no (HRA) 230-76-0310. 1978.
Report of the Health Manpower and Facilities Technical Consultant Panel. DHEW Pub no (HRA) 230-76-0310. 1978.
Statistics Needed for National Policies Related to Fertility: A Report. DHEW Pub no (PHA) 78-1455; series 4 no 18. 1978.
Information Needs of National Health Insurance: A Discussion of Principles, Issues, and Legislative Recommendations: A Report. DHEW Pub no (PHS) 80-1159. 1980.
Long-Term Health Care: Minimum Data Set: A Report. DHHS Pub no (PHS) 80-1158. 1980.
National Health Interview Survey: A Report. DHHS Pub no (PHS) 81-1160. 1980.
Uniform Hospital Discharge Data: Minimum Data Set: A Report. DHEW Pub no (PHS) 80-1157. 1980.
Uniform Ambulatory Medical Care: Minimum Data Set: A Report. DHHS Pub no (PHS) 81-1161. 1981.
Statistical Aspects of Physician Payment Systems. DHHS Pub no (PHS) 87-1461; series 4 no 24. 1987.
Report on the Long-Term Care Minimum Data Set. National Committee on Vital and Health Statistics Annual Report, 1987.
Final Report of the Subcommittee on Data Gaps in Disease Prevention and Health Promotion. National Committee on Vital and Health Statistics Annual Report, 1987.
Report of the Subcommittee on Long-Term Care Statistics: Activities from June 1987 to June 1988. National Committee on Vital and Health Statistics Annual Report, 1988.
Report on Minority Health Statistics. National Committee on Vital and Health Statistics Annual Report, 1988.
Report of the Work Group on Data Dissemination Issues. National Committee on Vital and Health Statistics Annual Report, 1988.
Report of the Subcommittee on Ambulatory Care Statistics and the Interagency Task Force on the Uniform Ambulatory Care Data Set. National Committee on Vital and Health Statistics Annual Report, 1989.
Report of the Subcommittee on Long-Term Care Statistics: Review of DHHS Interagency Task Force Report on the Long-Term Care Facilities '' Minimum Data Set.'' National Committee on Vital and Health Statistics Annual Report, 1989.
Report of the Workshop on Improving Cause-of-Death Statistics. National Committee on Vital and Health Statistics Annual Report, 1990.
Report of the Subcommittee on Medical Classification Systems Concerning Issues Relating to the Coding and Classification Systems. National Committee on Vital and Health Statistics Annual Report, 1990; NCHS Working Paper Series no 37. 1990.
Interim Report of the Subcommittee on Long-Term Care Statistics on the Nursing Home Resident Assessment System. National Committee on Vital and Health Statistics Annual Report, 1990.
Report of the Second Workshop on Improving Cause-of-Death Statistics. National Committee on Vital and Health Statistics Annual Report, 1991.
Report on the Need to Collect External Cause-of-Injury Codes in Hospital Discharge Data. National Committee on Vital and Health Statistics Annual Report, 1991; NCHS Working Paper Series no 38. 1991.Report on Medical Indigence. National Committee on Vital and Health Statistics Annual Report, 1991.
Report on Mental Health Status Measures in National Surveys. National Committee on Vital and Health Statistics Annual Report, 1991.
Proposed Revision to the Uniform Hospital Discharge Data Set. National Committee on Vital and Health Statistics Annual Report, 1992.
Report of the Work Group on Confidentiality. National Committee on Vital and Health Statistics Annual Report, 1992.
Recommendations for a Single Procedure Classification System. National Committee on Vital and Health Statistics Annual Report, 1993.
Report of the Subcommittee on State and Community Health Statistics. National Committee on Vital and Health Statistics Annual Report, 1993.
Disability and Long-Term Care Data Gaps and Issues. National Committee on Vital and Health Statistics Annual Report, 1994.
Report on Uniform Ambulatory Care Data Set. National Committee on Vital and Health Statistics Annual Report, 1994.
Report and Conclusions Regarding the Availability of Racial and Ethnic Identifiers in the SSA/HCFA Administrative Record Systems. National Committee on Vital and Health Statistics Annual Report, 1994.
DEPARTMENT OF HEALTH AND HUMAN SERVICES
John R. Lumpkin, M.D., M.P.H.
Illinois Dept. of Public Health
| HHS EXECUTIVE STAFF DIRECTOR
Director, Division of Data Policy
Office of the Assistant Secretary
for Planning and Evaluation, DHHS
Marjorie S. Greenberg
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.
National Director for Data Warehousing
Kaiser Permanente Medical Care Program
| Kathryn L. Coltin, M.P.H.
Director, External Quality and
Harvard Pilgrim Health Care
| Kathleen A. Frawley, J.D.,M.S.,RHIA
Health Information Services
St. Mary's 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.
Professor of Clinical Psychiatry and Pediatrics
Vice Chairman, Clinical Services
Neuropsychiatry & Behavioral Science
University of South Carolina
Columbia, South Carolina
| Lisa I. Iezzoni, M.D., M.S.
Professor, Department of Medicine
Harvard Medical School and Division of Gen. Medicine & Primary Care
Beth Israel Deaconess Medical Center
| Clement Joseph McDonald, M.D.
Distinguished Professor of Medicine
Indiana University School of Medicine
| Paul Newacheck, Dr. P.H.
Professor of Health Policy and Pediatrics
Institute of Health Policy Studies
School of Medicine
University of California, San Francisco
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.
|Gary G. Christoph, Ph.D.
Chief Information Officer
Director, Office of Information Services
Health Care Financing Administration
| J. Michael Fitzmaurice, Ph.D.
Senior Science Advisor for Information Technology
Agency for Healthcare Research and Quality
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 Department's 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:
- The extent to which persons required to comply with Part C of the Act are cooperating in implementing the standards adopted under such part;
- The extent to which such entities are meeting the security standards adopted under such part and the types of penalties assessed for noncompliance with such standards.
- Whether the federal and State Governments are receiving information of sufficient quality to meet their responsibilities under such part.
- Any problems that exist with respect to implementation of such part.
- The extent to which timetables under such part are being met.
(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.
ANNUAL COST ESTIMATE
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