The National Committee

on Vital and Health Statistics

1949-1999

– 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
population’s 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 Committee’s 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 national committee concept was born at the Paris Conference,
held in the spring of 1948, for the Sixth Decennial Revision of the
International Lists of Diseases and Causes of Death. The Conference achieved
what seemed impossible — the international acceptance by all nations of a
combined statistical classification for both causes of sickness and causes of
death…. The conference concluded that this method of working [i.e., national
organizations’ contribution of funds and technical skills to international
agencies] could be used to great advantage in the future on the many problems
facing public health statistics. It then expressed the desire that the World
Health Organization…decentralize some of the many statistical problems in the
fields of health and vital statistics for study by national technicians as a
preliminary step in the international development of standards and methods. It
urged that all governments establish national committees on vital and health
statistics …, and that such national committees study broadly the problem of
producing satisfactory national and international statistics in the fields of
health.…(1)

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:

Apart from approving a comprehensive list for both mortality and
morbidity and agreeing on international rules for selecting the underlying
cause of death, [the conference] recommended the adoption of a comprehensive
programme of international cooperation in the field of vital and health
statistics. An important item in this programme was the recommendation that
governments establish national committees on vital and health statistics for
the purpose of coordinating the statistical activities in the country, and to
serve as a link between the national statistical institutions and the World
Health Organization. It was further envisaged that such national committees
would either singly or in cooperation with other national committees, study
statistical problems of public health importance and make the results of their
investigation available to WHO.(2)

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:

Why is it that the present National Committee has had so much
success? I think one of the reasons is that it has called for help from many
specialties. Another reason is its choice of topics for study. And I think a
third reason is the continuity of service and contributions of its Executive
Secretary.(5)

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:

By and large, health statistics are still in the horse and buggy
stage of development. Except for mortality statistics and morbidity statistics
on the reportable diseases, no current index of the health of the general
population exists. Mortality statistics and the reports on communicable
diseases have served satisfactorily the major needs of the health programs in
the past, but with the intensification and extension of health activities, they
have become less and less adequate in their present form as indicators of
existing health problems. However, these statistics still have very important
uses and need to be developed further….

The results of the National Health Survey conducted well over 10
years ago are still being used in estimating the current illness situation.
More current data based upon improved sampling and survey techniques are
needed….

Hospital records represent the largest existing body of medical
information collected currently. Only a limited amount of statistical data are
now being derived from these records….

In the field of fetal mortality, there is need for planning
methods of securing useful statistics on causes of fetal death. Pregnancy
wastage is a problem of considerably greater magnitude than infant mortality in
the United States….

The kinds of vital and health statistics needed in the United
States are clear in broad outline form, but there remain the problems of
filling in the outline, developing techniques and applying them in the field.
Progress is hampered by confusion in terminology and lack of agreement among
technicians concerning objectives and on the specific approaches to problems.
Misinformation, or lack of information, regarding the feasibility of using
certain source materials and the validity of results to be obtained from such
source data has also added to the difficulty in arriving at satisfactory
solutions. Perhaps the greatest obstacle in the development of vital and health
statistics has been the lack of research to test hypotheses, methods, and
procedures. The U.S. NCVHS is not in a position to conduct field studies or
provide funds for research. The committee contributes to progress in the field
of vital and health statistics by defining the questions on which a common
perspective has been lacking, and by stimulating studies germane to their
resolution.(7)

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,

The Committee has been especially successful in securing the
cooperation of many workers in many fields, whether to serve on the Committee
itself or its subcommittees or to act as consultants to either. The overall
success of the Committee demonstrates that statisticians and experts in a
variety of health areas can work and plan together to the mutual advantage of
their professional interests. The institutional forms and procedures that
sometimes had to be created or allowed to grow in accomplishing this should be
of interest even outside the rather wide boundaries of public health.(10)

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:

[I]t is multidisciplinary (an unusual concept 15 years ago); it
provides a means for vital and public health statisticians to cooperate with
sources and users of their data; it conducts no statistical programs of its
own, has no authority except its judgment, and endeavors only to be
constructively responsive to questions posed by others in the public health and
medical fields; and it is part of an international movement, since some 50
countries have the same or similar framework.(13)

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 Committee’s 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:

The great increase in the concern of the Federal Government with
respect to the planning, provision, and assessment of health resources and
health services has called for a corresponding need for and collection of
health-related data. Federal concern, financial support, and data collection
efforts related to the supply of health facilities and health manpower go back
for many years…. Legislation supporting Medicare, Medicaid, and maternal and
child health services has also given the Federal Government a major role in
paying for health services and responsibility for assessing that care. The new
health planning legislation has broadened and reinforced these Federal
concerns.

The effects of these Federal responsibilities have resulted in a
sharp growth in needs for data to plan, administer, and evaluate health service
and health resource programs and a proliferation of often duplicated reporting
requirements with consequent burdens on State agencies and on health service
institutions.(17)

Expansion

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):

At present there is no specific mention in the statutes of the
U.S. National Committee on Vital and Health Statistics…. It should be
formally designated as the official body for obtaining public advice,
assistance and approval for the development and promulgation of terms, basic
data sets, classifications, and guidelines for national and international use.
All Western countries have such a body, and it is this group through which we
“legitimize” common approaches to health statistics at home and
cooperate with the World Health Organization and other countries so that
international comparisons of health needs, services, demands, and outcomes can
be made. [Such standardization] is the best way to insure cooperation and also
provide flexibility for individual and local needs. With the advent of new
technology, data can be collected in any format, aggregated by the computer and
arrayed in any desired output format. This important distinction between forms
for data acquisition, computer systems for data processing, standards and
guidelines should be clearly stated. To do otherwise is to promote confusion
and, as industry has found, increase the costs of collecting masses of data
untouched by human thought!(18)

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,

In order to ensure continuity in Federal programs and to
maximize program effectiveness in the face of tightened resources, the
Committee believes it necessary to further define and strengthen the Committee
in its Charter-mandated role as an adviser to the Secretary and his designees.
Although this advisory role has been principally carried out through the Office
of the Assistant Secretary for Health, the possibility of Departmental
reorganization and changes in administrative responsibilities dictate review of
these relationships to ensure that the Committee’s advice, consultation, and
assistance will be most helpful…. The NCVHS believes it must continue to
serve as a forum for the free and frank interchange of views on statistical
matters from organizations within the Department as well as from other public
agencies and the professional and lay public.(22)

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 Committee’s 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:

[F]ederal agencies and national bodies such as NCVHS are being
asked to facilitate a more inclusive process whereby stakeholders can identify
common data needs and find suitable ways to meet them…. Importantly, these
calls reflect a new conception of national leadership-one that facilitates
partnership and consensus rather than seeking to impose a given solution. In
essence, government is being asked to assist private sector organizations and
functions, not supplant them. This kind of leadership will depend on better
cooperation among government agencies, both federal and state, and private
sector institutions…. The evolving health marketplace, characterized by a
heightened need for information sharing and new thinking about the role of
government, is one in which the National Committee on Vital and Health
Statistics can play a strategic role.(27)

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
Committee’s 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 law’s 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
Committee’s 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 Committee’s 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 Committee’s 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 Committee’s 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 Committee’s 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 HCFA’s 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.

Quality

NCVHS stays in touch with the organizations created in 1999 to carry out the
recommendations of the President’s 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 Committee’s
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 Committee’s 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:

Congress has inadvertently made the work of the Committee more
difficult by including administrative simplification in its recent reforms of
the health insurance market without enacting confidentiality safeguards. In so
doing, Congress has drawn heightened attention to these issues well before it
appears ready to grapple with them. Having looked at these matters for many
years now, the Committee would recommend, as always, that confidentiality
safeguards already be in place as standardization efforts move forward.(29)

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 Department’s 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.

Registries

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.

Identifiability

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 organization’s “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.

Standardization

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:

In terms of quantity, large amounts of data are available.
However, as informational resources, the data have limited potential in terms
of present quality and usability. ‘Similar’ data available from existing
multiple sources generally lack uniformity of definition and universal
availability. As a consequence,…definitional differences preclude meaningful
comparisons, current redundant collection is expensive…, and major data gaps
exist….(30)

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
Committee’s 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

the U.S. Committee assume a developmental role in the long-term
care UMHDS; all three data sets [hospital, ambulatory, and long-term
care]… be reviewed, revised, and promulgated by the U.S. Committee; the
Department take the initiative to cooperate with WHO in joint international
development of UMHDS.”(33)

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 Subcommittee’s 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 Committee’s 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:

NCVHS sponsored a conference to which medical organizations and
specialty groups were invited, and the open forum provided invitations for
their formal input into the U.S. suggestions for changes for the 10th revision.
Comments were individually considered and most were subsequently included in
the recommendations submitted to the World Health Organization in Geneva.
Thereafter, the U.S. delegation, several of whom were NCVHS members at the
time, referred to those recommendations on the floor of the Assembly of the
[1989] Revision Conference in Geneva and succeeded in having most of them
adopted by the Assembly after they had been questioned by WHO staff. Both the
process and the representation were effective.(36)

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 nation’s 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 Committee’s 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 Committee’s fiftieth year neatly
reconnects it with its origins “as part of an international
movement.”(40)

ONGOING CHALLENGES

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 public’s
health and not be an end in themselves or beneficial only to a few. In the
Committee’s 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
Committee’s 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 HIPAA’s 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 other’s 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 Committee’s
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 Committee’s 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 Committee’s 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.”

Looking Ahead

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
population’s health. The Committee’s 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 Detmer’s 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 Committee’s
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 Committee’s
mission-to advise on shaping a national information strategy for improving the
public’s 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 Department’s commitment to an information
strategy and to strengthen the Committee’s 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.

INTERVIEWEES

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:

NCVHS Chair and former Chairs:

Ronald Blankenbaker, M.D.

Don E. Detmer, M.D.

John L. Lumpkin, M.D. (current Chairman)

Judith Miller Jones

Kerr L. White, M.D.

NCVHS staff and former staff:

William Braithwaite, M.D., Ph.D. (HHS)

Gail Fisher, Ph.D. (former Executive Secretary)

Mary Anne Freedman (HHS)

Marjorie S. Greenberg (current Executive Secretary)

Gooloo S. Wunderlich, Ph.D. (former Executive Secretary)

Former NCVHS members:

James P. Cooney, Ph.D.

William Felts, M.D.

Mary Anne Freedman


NOTES

  1. The United States National Committee on Vital and Health
    Statistics, October 1949.
  2. Manual of the International Statistical Classification of
    Diseases, Injuries, and Causes of Death, Based on the Recommendations of the
    Seventh Revision Conference, 1955. Geneva. WHO, 1957. (quoted in reference 7,
    p.37)
  3. New Approaches in Health Statistics: Second International
    Conference of National Committees of Vital and Health Statistics (Copenhagen,
    Denmark in October, 1973). Geneva: World Health Organization, Tech Report
    Series 559, 1974.
  4. p. 4, The United States National Committee on Vital and Health
    Statistics, October 1949.
  5. Report of the Twentieth Anniversary Conference of the United
    States National Committee on Vital and health Statistics. National Center for
    Health Statistics, Series 4, Number 13. Washington, D.C.: U.S. Department of
    Health, Education, and Welfare, Public Health Service, September 1970, p.
    34.
  6. Functions and policies of the U.S. National Committee on Vital
    and Health Statistics (Washington, D.C.: PHS/HEW, date unknown)
  7. 1950 Annual Report
  8. The United States National Committee on Vital and Health
    Statistics, October 1949, p. 4.
  9. Fact sheet on the U.S. National Committee on Vital and Health
    Statistics, 12/1/52
  10. History of the United States National Committee on Vital and
    Health Statistics, 1949-1964. National Center for Health Statistics Series 4,
    Number 5. Washington, D.C.: U.S. Department of Health, Education and Welfare,
    Public Health Service, June 1966. (See also Appendix, “Origins of the
    National Committee System,” p.36)
  11. Origin, Program, and operation of the U.S. National Health
    Survey, NCHS, PHS Publication No. 1000, Series 1. No. 1. p. 4.
  12. Report of the Fifteenth Anniversary Conference of the United
    States National Committee on Vital and Health Statistics. National Center for
    Health Statistics, Series 4, Number 4. Washington, D.C.: U.S. Department of
    Health, Education, and Welfare, Public Health Service, June 1966, p. 7.
  13. Ibid.
  14. Report of the Twentieth Anniversary Conference of the United
    States National Committee on Vital and health Statistics. National Center for
    Health Statistics, Series 4, Number 13. Washington, D.C.: U.S. Department of
    Health, Education, and Welfare, Public Health Service, September 1970, p. 3.
  15. 1979-80 Annual Report, p.17.
  16. Origin, Program, and operation of the U.S. National Health
    Survey, NCHS, PHS Publication No. 1000, Series 1. No. 1. p. 4.
  17. The Cooperative Health Statistics System: Its Mission and
    Program. Final Report from the Task Force on Definitions to the Cooperative
    Health Statistics Advisory Committee, August 30, 1976. HEW Publication Series
    4, No. 19, 1977, p. 8.
  18. White KL. Statement to the Senate Committee on Labor and
    Public Welfare, Subcommittee on Health, 2/19/74.
  19. 1975-76 Annual Report, p. 6-7.
  20. Health Statistics Plan, Fiscal Year 1976-77. PHS/HEW, November
    1975, p. 2-3.
  21. Ibid, p. 35.
  22. 1979-1980 Annual Report, p.12.
  23. 1983-85 Annual Report, p. 11-12.
  24. 1986 Annual Report, p. 38.
  25. 1986 Annual Report, p. v.
  26. PL 93-353, Public Health Services Act, sect. 306, July 1974
    (Section (2)(A)).
  27. Jones JM. Foreword, The National Committee on Vital and Health
    Statistics, 1994, p. vi.
  28. Report of the Twentieth Anniversary Conference of the United
    States National Committee on Vital and health Statistics. National Center for
    Health Statistics, Series 4, Number 13. Washington, D.C.: U.S. Department of
    Health, Education, and Welfare, Public Health Service, September 1970, p. 5
    ff.
  29. Jones JM. Op cit, p. ix-x.
  30. Cooney J. Discussion Paper on Uniform Minimum Health Data Sets
    (UMHDS), 1/2/80 (unpublished), p.1.
  31. Greenberg MS. History of Health Care Core Data Set
    Development, attachment 1 to Common Core Health Data Sets, 1/31/95
    (unpublished).
  32. Ibid.
  33. Cooney J. Op.cit., , p.12.
  34. Greenberg MS. Op cit.
  35. NCVHS core data elements recommendations, 1996. Quotation is
    on page 3; also see discussion on page 17.
  36. Felts WR. Correspondence, 6/13/95.
  37. 1983-85 Annual Report, p.8.
  38. 1983-85 Annual Report, p.7; 1993 Annual Report, p.56.
  39. 1993 Annual Report, p.56.
  40. See page 7 of this report.

Appendix 1

Chairs and Executive Secretaries, 1949-1999

Chairs

1998-present John L. Lumpkin, M.D.
1995-1998 Don E. Detmer, M.D.
1990-1996 Judith Miller Jones
1985-1991 Ronald G. Blankenbaker, M.D.
1983-1986 Robert H. Barnes, M.D.
1983 Cleve Killingsworth, Jr.
1978-1980 Lester Breslow, M.D.
1974-1979 Kerr L. White, M.D.
1972-1974 Abraham Lilienfeld, M.D.
1969-1972 Forrest E. Linder, Ph.D.
1966-1969 Robert Berg, M.D.
1962-1967 Robert Dyar, M.D.
1960-1963 Brian MacMahon, M.D.
1961 Pascal K. Whelpton
1956-1960 Philip M. Hauser, Ph.D.
1949-1956 Lowell J. Reed, Ph.D.

Executive Secretaries

1997-present Marjorie S. Greenberg
1982-1997 Gail F. Fisher, Ph.D.
1979 Samuel P. Korper, Ph.D., M.P.H.
1976-1979 Gooloo S. Wunderlich, Ph.D.
1974-1976 James M. Robey, Ph.D.
1975 I.M. Moriyama, Ph.D.
1971-1973 Dean E. Krueger
1949-1972 I.M. Moriyama, Ph.D.

Appendix 2

Subcommittees, Technical Consultant Panels, and Work Groups

TR>Working Party on Classification of Neoplasms

(of the Revision of the International Classification of Diseases Subcommittee)Apr. 1970Apr. 1973

Appointed Discharged
1950
Ad hoc committees:
Morbidity Statistics July 1949 Dec. 1949
Morbidity Statistics Dec. 1949
Medical Care Statistics Feb. 1949 July 1949
Case Registers Feb. 1949 July 1949
Hospital Morbidity Statistics July 1949
Subcommittees:
Definitions of Live Births and Fetal Deaths July 1949 Dec. 1949
Fetal and Neonatal Mortality July 1949 June 1950
Military Health Statistics Sept. 1949
Fertility and Population Statistics Dec. 1949 Nov. 1962
1956
Classification of Physical Impairments Feb. 1951
Hospital Statistics Apr. 1952 Jan. 1960
National Vital Statistics Needs Oct. 1954 Oct. 1956
Glossary of Terms for Morbidity and Medical Care Statistics Nov. 1954 Apr. 1956
Utilization of Marriage Statistics Nov. 1954 Oct. 1956
Medical Certification of Medicolegal Cases Mar. 1956 Jan. 1960
Classification of Causes of Fetal Deaths

(Renamed Classification of Causes of Perinatal Morbidity and Mortality in
1959)

June 1956 Nov. 1965
1957
Development of National Statistics on Divorces

(Renamed National Divorce Statistics in 1960)

Sept. 1956 June 1962
1958
Classification of Mental Diseases

(Renamed Classification of Mental Disorders)

Aug. 1957 Nov. 1965
Measures of Positive Health Dec. 1957 Aug. 1958
Classification of Cardiovascular Diseases Jan. 1958 Nov. 1965
1959
Quantification of Wellness Aug. 1958 Jan. 1961
International List Revision May 1959 Nov. 1965
1960
Revision of Classification of Accidents, Poisonings, and Violence May 1960 Nov. 1965
1961
Health Economics Apr. 1961 Oct. 1963
Classification of Congenital Malformations

(Renamed Classification of Congenital Defects)

Oct. 1961 Nov. 1965
(1962–No new subcommittees)
1963
Fertility Measurements Nov. 1962 Nov. 1965
1964
Statistics Available from Medicolegal Deaths May 1963 Nov. 1965
1965
Use of Vital and Health Statistics for Epidemiological Research Mar. 1965 Mar. 1968
Epidemiologic Use of Hospital Data May 1965 June 1969
Statistics of Indian Health Jan. 1965 Nov. 1969
1966
Migration and Health Statistics 1966 Nov. 1968
1967
Health Resources and Services

(No mention after 1968, but no indication of discharge)

Nov. 1967
Population Dynamics June 1967 May 1970
(1968–No new subcommittees)
1969
Vital Statistics System Revision Dec. 1968
1970
(Sharp curtailment of committee activities in 1970)
Uniform Hospital Abstract Form Oct. 1969 May 1973
1971
Revision of the International Classification of Diseases Apr. 1970 Apr. 1973
Financial Data Year Planning June 1970
Working Party of Classification of Mental Disorders

(of the Revision of the International Classification of Diseases Subcommittee)

Jan. 1971 May 1973
(1972–No new subcommittees)
1973
(First use of technical consultant panels; no dates given. Existing
technical consultant panels for each year are listed)
Ambulatory Medical Care Records
Needed Statistics and Statistical Data Systems for Formulation of National
Population Policies
1974
Ambulatory Medical Care Records
Analytical Potentialities of National Center for Health Statistics Data
Statistics Needed for Formulation and Evaluation of National Policies on
Fertility
Consideration of Statistics Needed to Ascertain the Effects of Environment
on Health
1975, 1976
Uniform Ambulatory Medical Care Data Set
Long-Term Care Minimum Data Set
Manpower and Facilities Minimum Data Set
Uniform Hospital Discharge Data Set
1977
Statistics Needed for Formulation and Evaluation of National Policies on
Fertility
Consideration of Statistics Needed to Ascertain the Effects of the
Environment on Health
Ambulatory Medical Care Data Set
Health Interview Survey
Long-Term Care Data Set
Manpower and Facilities Data Set
Organizing Principles for Health Information
Statistical Systems for National Health Insurance
Uniform Hospital Discharge Data Set
1978
Ambulatory Medical Care Data Set
Health Interview Survey
Long-Term Care Data Set
Manpower and Facilities Data Set
Statistical Systems for National Health Insurance
Uniform Hospital Discharge Data Set
1979-80
(Technical consultant panels were disallowed; National Committee on
Vital Health Statistics reinstituted the use of subcommittees)
Environmental Health Statistics 1980 *
Cooperative Health Statistics System 1980 *
Data Concepts and Methods 1980 *
International Statistics 1980 *
* Subcommittees presumably discontinued during 1981-82
hiatus.
1983-85
Uniform Minimum Health Data Sets June 1983 1987
Vital Statistics Cooperative Program June 1983 1985
Disease Classification and Automated Coding of Medical Diagnoses June 1983 1985
Statistics Aspects of Physician Payment Systems

(No dates given)

Data Gaps in Disease Prevention and Health Promotion Nov. 1985 1987
Work Group on NCHS Publications Review 1983 1985
Work Group on Policy and Direction 1983 1985
1986
(Charter reassessed, committee reorganized)
Executive Subcommittee 1985
Minority Health Statistics (subsequently renamed several times) 1986 1996
Statistical Aspects of Physician Payment Systems 1986 1986
1987
Medical Classification Systems 1987 1996
Long-Term Care Statistics 1987 1996
(Renamed Disability and Long-Term Care Statistics) 1994 1996
Ambulatory Care Statistics 1987 1996
(Renamed Ambulatory and Hospital Care Statistics) 1989 1996
Disease Prevention and Health Promotion Statistics 1987 1988
Work Group on Data Dissemination Issues 1987 1988
1988
Health Care Statistics 1988 1990
(1989–No new subcommittees)
1990
Mental Health Statistics 1990 1996
1991
State and Community Health Statistics 1991 1996
Work Group on Confidentiality 1991 1993
(changed to monitor in 1993 and to Subcommittee on Privacy and
Confidentiality in 1996)
(No new subcommittees in 1992, 1993, 1994, or 1995.)
November 1996 to June 1998
Subcommittee on Health Data Needs, Standards and Security
Workgroup on Data Standards
Workgroup on Population-Based Data
Subcommittee on Populations at Risk (renamed Subcommittee
on Population-Specific Issues
) (This Subcommittee, later renamed the
Subcommittee on Populations, was assigned the responsibilities of the
Subcommittees on Medical Classification Systems, Ambulatory and Hospital Care
Statistics, and State and Community Health Statistics.)
Subcommittee on Privacy and Confidentiality
Executive Subcommittee
Workgroup on Planning and Implementation (discontinued in
1998)
June 1998 to the present
Subcommittee on Standards and Security
Workgroup on Computer-based Patient Records (absorbed into
Subcommittee in 2000
)
Subcommittee on Privacy and Confidentiality
Subcommittee on Populations
Workgroup/Project on Health Statistics for the 21st Century
Workgroup on Quality

(This Subcommittee was assigned the responsibilities of the Subcommittees
on Health Statistics for Minority and Other Special Populations, Mental Health
Statistics, and Disability and Long-Term Care Statistics.)


Appendix 3

Reports and Letters

1996-1999 (listed in reverse chronological order)

1949-1996 (listed in chronological order)

  • The United States National Committee on Vital and Health
    Statistics
    , October 1949.
  • Recommendations on Definitions of Live Birth and Fetal Death.
    Public Health Service; Pub no 39. 1950.

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.

Annual Report of the United States National
Committee on Vital and Health Statistics, Fiscal Year Ending June
30th.
1950 1962 1969 1977 1989
1956 1963 1970 1978 1990
1957 1964 1971 1979/1980 1991
1958 1965 1972 1983–85 1992
1959 1966 1973 1986 1993
1960 1967 1974 1987 1994
1961 1968 1975/1976 1988 1995
1996-1998

DEPARTMENT OF HEALTH AND HUMAN SERVICES

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

(2000)

CHAIR

John R. Lumpkin, M.D., M.P.H.

Director

Illinois Dept. of Public Health

Chicago, Illinois

HHS EXECUTIVE STAFF DIRECTOR

James Scanlon

Director, Division of Data Policy

Office of the Assistant Secretary

for Planning and Evaluation, DHHS

EXECUTIVE SECRETARY

Marjorie S. Greenberg

Chief

Data Policy and Standards Staff

Office of Data Standards, Program Development and Extramural Programs

National Center for Health Statistics, CDC

MEMBERSHIP

Jeffrey S. Blair, M.B.A.

Vice President

Medical Records Institute

Albuquerque, New Mexico

Simon P. Cohn, M.D., M.P.H.

National Director for Data Warehousing

Kaiser Permanente Medical Care Program

Oakland, California

Kathryn L. Coltin, M.P.H.

Director, External Quality and

Data Initiatives

Harvard Pilgrim Health Care

Wellesley, Massachusetts

Kathleen A. Frawley, J.D.,M.S.,RHIA

Director

Health Information Services

St. Mary’s Hospital

Passaic, New Jersey

Daniel Friedman, Ph.D.

Assistant Commissioner

Bureau of Health Statistics,

Research and Evaluation

Massachusetts Department of Public Health

Boston, Massachusetts

Kathleen Fyffe, M.H.A.

Federal Regulatory Director

Health Insurance Association of America

Washington, D.C.

Robert M. Gellman, J.D.

Privacy and Information Policy Consultant

Washington, D.C.

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

Boston, Massachusetts

Clement Joseph McDonald, M.D.

Distinguished Professor of Medicine

Indiana University School of Medicine

Director

Regenstrief Institute

Indianapolis, Indiana

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

Houston, Texas

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

Baltimore, Maryland

M. Elizabeth Ward, M.N.

CEO, Foundation for Health Care Quality

Seattle, Washington

Kepa Zubeldia, M.D.

President

Claredi

Kaysville, Utah

LIAISON REPRESENTATIVES

Gary G. Christoph, Ph.D.

Chief Information Officer

Director, Office of Information Services

Health Care Financing Administration

Baltimore, MD

J. Michael Fitzmaurice, Ph.D.

Senior Science Advisor for Information Technology

Agency for Healthcare Research and Quality

Rockville, MD


THE SECRETARY OF HEALTH AND HUMAN SERVICES

WASHINGTON, D.C. 20201

CHARTER

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

PURPOSE

Collection, analysis and dissemination of health and health-related
information is a crucial aspect of the responsibilities of the Department of
Health and Human Services. The Department also plays a national leadership role
in health data standards and health information privacy policy, and is charged
with the responsibility for implementation of the Administrative Simplification
provisions of the Health Insurance Portability and Accountability Act of 1996.
In addition, the Department engages in cooperative efforts with other countries
and the international community to foster health data standards, comparability
and cross-national research.

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.

AUTHORITY

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.

FUNCTION

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.

STRUCTURE

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

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.

COMPENSATION

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.

REPORTS

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.

TERMINATION DATE

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.

APPROVED:

January 31, 2000 Donna E. Shalala Secretary of Health and Human Services

 


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