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Executive Summary
The nation's health care system has changed dramatically during the
past two decades. Health policy makers and researchers have a compelling
need for more and better data on a number of issues if they are to under-
stand and solve the current health care problems facing the nation. The
national health statistical systems have not kept pace with the changing and
increasing demand for information that this rapidly evolvin;, health care
delivery environment has generated. The gaps in information on a wide
array of issues concerning health are growing. The current national data
systems are becoming outdated. They do not provide the information need-
ed to allow researchers and policy makers to assess adequately the effect of
changes in the financin,, organization, and delivery of health care, or the
impact of other social and economic trends, on the appropriateness, quality,
costs, and outcomes of care.
Recognizing that existing national data systems need to be more re-
sponsive to the changes occurring in the health care system, the National
Center for Health Statistics (NCHS) in the U.S. Public Health Service is
developing a plan for restructuring its existing surveys of health care pro-
viders and service settings) into what it has chosen to call an integrated
National Health Care Survey. Under its plan the National Health Care
iThe surveys are the National Hospital Discharge Survey, the National Ambulatory Medical
Care Survey, The National Nursing Home Survey, and the National Master Facility Inventory.
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2
TOWARD A NATIONAL HEALTH CARE SURVEY
Survey will build on the existing provider surveys, which will be merged
and expanded over time and geographically linked with the National Health
Interview Survey (NHIS). The aim of this proposed new survey is to pro-
vide a more complete and useful picture than now exists of the provision of
medical care in the United States. The main features of the NCHS plan are:
.
To conduct the survey on an annual basis; ~
· To expand the coverage of types of health care providers and health
service settings to include hospital emergency and outpatient de-
partments, ambulatory surgery centers, home health agencies, and
hospices;
· To revise the sample design using a three-stage cluster design in
which a subset of the primary sample of the NHIS will be used to
select the sample for the independently designed provider-based
surveys; and
To develop a capability to conduct follow-up studies to examine
issues related to outcome and subsequent medical care.
NCHS requested that the National Academy of Sciences and the Insti-
tute of Medicine convene a panel of experts to evaluate their plans for the
National Health Care Survey. The panel was asked to undertake two majo
tasks in this evaluation:
(1) Identify the principal current and future needs for health care data
by public and private policy makers, health care providers, health
service researchers, and others and
(2) Determine the extent to which the proposed survey can meet identi-
fied needs for data given the statistical aspects of the proposed
survey, such as sample design, sample size, data collection meth-
ods, and data sets.
This report responds to this request. It reviews the main features of the
proposed survey from two perspectives: the extent to which the survey would
enable NCHS to meet the changing data needs associated with the health care
polio; Issues identified by the panel, and the technical features of the plan in
its con nt stage of development. It goes beyond a simple review of NCHS
plans, however, to suggest a broader strategy for the surveys that the panel
believes will more nearly meet the needs of the health care system.
The panel's major findings and conclusions based on this review and its
deliberations are summarized below, followed by the text of its recommen-
dations.
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EXECUTIVE SUMMARY
3
FINDINGS AND CONCLUSIONS
In reviewing the key features of, and developments in, health care and
the array of national health data sources available, it became clear to the
panel that, although there is an abundance of data collection activities in
this nation, they often are uncoordinated and are sometimes duplicative.
Moreover, they do not provide the full range of statistical information need-
ed to monitor and evaluate changes in the availability, financing, and quali-
ty of health care in order to meet today's challenges, let alone the challeng-
es of the next century.
It also became clear to the panel that no single survey is likely ever to
meet all the criteria, address all the technical problems, or meet all users'
needs for data. In order to be able to meet future demands for informa-
tion, a coordinated and integrated system of health care data collection
activities involving several organizational entities is required. Collective-
ly such a data system should be flexible enough to adapt to the changes in
the health care system as they occur and to meet special needs on an ad
hoc basis.
NCHS Plan for a National Health Care Survey
The panel commends NCHS for taking the first steps in restructuring
and expanding the existing health provider surveys to enhance the amount
and kind of information available about health care events. The panel
endorses the concept of a National Health Care Survey integrated with the
National Health Interview Survey to monitor the nation's health, illness,
and disability; the use of and costs of care by incident and episode; and the
outcomes and cost-effectiveness of the services provided. Such monitoring
and evaluation should broadly examine both general and mental health and
related disabilities.
The panel has reviewed the main features of the survey as proposed in
the NCHS plan. In its judgment the plan in its present stage of development
does not provide the capacity to address important questions about the in-
terrelationships between the health status of individuals and the patterns
and cost of health care services they receive from a broad range of health
care providers and service settings over time. Therefore the panel believes
that it is important for it to provide guidance that would redirect the plan-
ning process. The timing is also opportune, since NCHS is currently in the
midst of planning the 1995 redesign of NHIS, which will affect NHIS data
collection for several years. NCHS should take into consideration the pan-
el's recommendations relating to their plans for the proposed National Health
Care Survey in reaching final decisions on the NHIS redesign. The panel's
major findings and conclusions follow:
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TOWARD A NATIONAL HEALTH CARE SURVEY
.
.
The panel supports the annual data collection schedule planned by
NCHS, but it is concerned about further reducing the already small
sample sizes to offset increased costs. Such action will further
aggravate the existing problems of producing estimates for subpop-
ulations, for rare diseases and diagnoses, and for subnational lev-
els. NCHS proposes to address that problem by aggregating data
over more than a year. Such multiyear aggregation of data may be
less appropriate for characteristics that are not stable across years.
It will also affect the timeliness of data production and analysis.
Moreover, the panel seriously doubts the possibility of producing
small-area estimates even with the proposed aggregation of data
over multiple years.
The panel endorses the center's plan to extend coverage of the
health care provider surveys to include additional health care set-
tings that have emerged in recent years. However, further exten-
sions are needed to include a fuller range of providers than current-
ly planned both physicians and nonphysicians. Examples of these
would include dentists, psychologists, occupational therapists, phar-
macists, podiatrists, chiropractors, nurses, nurse practitioners, phy-
sician assistants, nurse midwives, and optometrists, all of whom
deliver some form of health care. The panel also finds the exclu-
sion of federal hospitals and long-term care hospitals a serious de-
ficiency in the present plan.
Although the panel is in general agreement with the topics current-
ly included in the health care provider surveys, it finds the content
inadequate to meet the data needs for the current and future health
care policy issues. Some of the key issues not addressed in the
center's plan are summarized below:
InfoITnation on longitudinal dimensions of care is of critical
importance to assess the effects of treatment, but current data
sets do not permit data aggregation to ::: pict meaningful pat-
terns of care over time. Person-based did - are needed on health
care received by individuals over time arid over the entire pro-
gression of an episode of illness.
The cost of care is one of the most, if not the most, important
health policy issues confronting the nation today, yet hardly any
information is collected by NCHS in the health care provider
surveys on payers or health care costs aIld expenditures, includ-
ing the component paid by insurance. Section 306 of the Public
Health Service Act, which provides the statutory mandate for
NCHS, lists the specific areas in which statistics are to be col-
lected. These mandated areas cover health resources, the utili-
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EXECUTIVE SUMMARY
s
zation of health care, and health care costs and financing, in-
cluding the trends in health care prices and costs, the sources of
payments for health services, and federal, state, and local gov-
ernment expenditures for health care.
Data on readmissions to hospitals and multiple visits to ambula-
tory care settings are not available because the information ob-
tained is on discharges and visits in the provider surveys and
not on persons.
A major limitation, not only of NCHS surveys but of virtually
all data sets about health care services, is the lack of detailed
information on the tests and services performed during the vari-
ous treatment events. The addition of such data from medical
records or charts to the content of the survey is critical to re-
search related to the appropriateness of care, the outcomes and
efficacy of treatments, and the costs of treatment.
As stated earlier, a central feature of the center's plan is to link geo-
graphically the sample selection of the provider surveys with the sampling
design of the NHIS by using a subsample of the NHIS primary sampling
units to select the samples for the independently designed provider surveys.
NCHS has identified several potential advantages of the revised design:
The panel concludes that there may be some practical advantages to
having the provider surveys and the NHIS conducted in the same
primary sampling units (PSUs). There may be efficiencies in shar-
ing data collection staff, although the real benefits cannot be as-
sessed until the actual strategies for data collection are fully in
place. Furthermore, the assumed cost saving of having, the health
care providers geographically clustered needs to be demonstrated.
The trade-off between reduced costs through use of a clustered
provider sample and the impact of this design on the efficiency of
the sample also needs to be examined in greater detail.
.
.
NCHS has given considerable thought to the concept of an integrat-
ed National Health Care Survey and has presented arguments that
its plan implies integration. Although the panel supports the use of
the NHIS PSUs as an important first step, it emphasizes that simply
conducting the provider surveys in the NHIS PSUs does not by
itself result in a meaningfully integrated survey.
The panel is skeptical about the assumptions of increased analytic
utility resulting from geographic linkage, and it doubts there is
benefit in defining the PSUs in terms of health service areas. There
are several problems associated with the definition of health ser-
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6
TOWARD A NATIONAL HEALTH CARE SURVEY
.
vice areas across a range of health services and health care provid-
ers that need to be researched before the utility of this kind of
analysis can be assessed. The health service area concept, of course,
can be used in analyses of NCHS survey data without using the
concept to define PSUs.
The NCHS plan for a National Health Care Survey includes devel-
opment of the capability to conduct routine and specialized patient
follow-up studies of the sample event visit, discharge or admis-
sion to obtain information beyond what is available in provider
records. Although the follow-up design described by NCHS poten-
tially adds somewhat to the value of the data currently being col-
lected, in the panel's judgment the key issue is the appropriateness
of an event-based sample for follow-up studies. A major limitation
of the National Health Care Survey as presently designed is that
all the provider surveys begin with a sample of events and not
with a sample of persons. This is not an efficient design for pro-
ducing person-based statistics. Many health conditions produce
multiple visits to an ambulatory care setting; NCHS needs to deter-
mine the extent of the confounding problem resulting from the use
of an event-based survey. There are also statistical problems that
need to be resolved, arising from the fact that an individual's chance
of selection in the sample depends on the number of health care
events he or she had for the condition.
In conclusion, the panel endorses the primary objective of the planned
survey "to produce annual data on the use of health care and the outcomes
of care for the major sectors of the health care delivery system. These data
will describe the patient population, medical care provided, financing, and
provider characteristics." The panel is concerned, however, that, as cur-
rently designed, the survey appears to be limited mostly to modest modifi-
cations and expansions in coverage and content of the existing health care
provider surveys with minimal, if any, true integration of design or data. If
the center's objective is to move in the direction of an integrated survey
design to provide comprehensive health care data that are urgently needed,
especially on the key dimensions of access, expenditures, illness episodes,
and outcomes, in the opinion of the panel, it must move beyond the event-
based sampling procedures that are proposed in its plan.
Design Framework for a National
Health Care Data System
In reviewing the features of the NCHS plan, the panel concludes that,
even taking the panel's recommendations for changes and improvements in
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EXECUTIVE SUMMARY
7
the current plan into account, the center's vision for a National Health Care
Survey falls short of meeting anticipated information needs for the critical
years ahead and into the next century. Long-term strategy requires consid-
eration of further, more fundamental restructuring of the surveys to produce
~ man that is flexible enough to adapt to changes and to new and rapidly
emerging needs for health care data. Such a strategy requires a more inte-
grated and a more visionary course of action than currently set forth by
NCHS. As stated at the outset, no one survey can meet all the requirements
and provide answers to all the important health care questions, but consider-
ably more can be done than has been proposed by NCHS thus far.
The panel believes that there is need to develop an integrated data
system with linkage capability at the individual level that includes a variety
of approaches, including surveys of specific types of health care providers
and neaten care settings, follow-up of individuals seen for specific condi-
tions by specific types of providers in specific settings, longitudinal surveys
of the household and nursing home populations, and possibly surveys of
episodes of illness. In addition, there is need for improved collaboration,
coordination, and integration of health care data collected by NCHS and by
other agencies of the U.S. Department of Health and Human Services.
The panel therefore recommends a more ambitious course of action that
will provide the basis for a flexible, long-term data collection strategy, one
that encompasses most of the features of the present NCHS plan, but that
calls for a significant long-term expansion in the breadth and depth of
information to be gathered through a truly integrated National Health Care
Data System.
This report presents the panel's strategy for achieving these objectives,
not so much as a specific design but as a design framework for an integrat-
ed National Health Care Data System within which a variety of survey
approaches linked to the NHIS can be developed, and from which a broad
range of health-related information needs can be met. This approach would
provide not only new data, but also a basis for linkage of data on a popula-
tion-based sample of individuals with data on their health care providers.
The panel believes that, taken as a totality. its recommended course of
A,
action represents the appropriate and preferred direction for the National
Health Care Data System.
The panel's proposed design framework has four key elements:
(1) Changing the origin of the provider samples from listings of pro-
viders and service settings developed and maintained by NCHS to
identification of providers and service settings by respondents to
the NHIS (at least for those health care providers not currently
included in the provider inventories maintained by NCHS). This
NHIS-based approach offers rapid identification of emerging health
care providers and service settings, which is just not possible with
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TOWARD A NATIONAL HEALTH CARE SURVEY
the current approach of developing and maintaining national inven-
tories for given types of providers to serve as sampling frames.
(2) Sampling from the NHIS respondents to gather longitudinal per-
son-based data on the health status and health care sought and re-
ceived by individuals, including what services were provided by
which providers, along with the associated costs and expenditures.
(3) Modifying the sampling design of the National Nursing Home Sur-
vey (NNfIS) to collect longitudinal data from the institutionalized
population on health care utilization from providers other than the
nursing home.
(4) Generating a sample of episodes of illness from respondents to the
NHIS and the NNHS. These respondents with an episode of illness
will be followed over a period of time to collect data from both the
respondents and their health care providers on the process of health
care, the utilization of providers, and costs and expenditures associ-
ated with the episode.
The panel recognizes that, despite its many potential benefits, adoption
of the recommended design framework raises several important issues on
various aspects that would require careful examination and resolution as to
feasibility and costs prior to making final decisions on the details of the
design. Many of the issues identified are related to some of the screening
and patient follow-up procedures. Perhaps the most important pertain to the
ability: (1) to identify visits to specific providers, (2) to obtain information
making possible contact with identified providers, (3) to obtain permission
from patients to contact the providers they have identified and to access
their records, and then (4) to successfully enroll the providers and the pa-
tients in the survey.
Although the concept of the episodes of illness as a unit of analysis is
attractive and such data would prove to be a very valuable analytical
database, especially for medical effectiveness research, the panel recog-
nizes that experience with its application is limited and problematic, espe-
cially as it applies to chronic illness episodes. Developing the capability
to generate data on episodes of various types of illness raises important
and complex methodological issues associated with the definition, classi-
fication, and measurement that should be researched by NCHS in collabo-
ration with the Agency for Health Care Policy and Research in a systemat-
ic manner.
The panel concludes that NCHS should establish a research agenda to
examine the issues on the various aspects of the proposed design framework
prior to making final decisions on the specific details of the design.
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EXECUTIVE SUMMARY
9
The panel outlines a phased multiyear strategy starting in 1992 for
implementing its proposed data content, coverage, and design framework
for a National Health Care Data System.
Coordination and Resource Considerations
In the course of the study the panel has noted several issues not directly
addressed in its charge, some broadly related to the activities of NCtIS and
others that go beyond to the structural issues of collaboration and coordina-
tion of data gathering and analysis within the Department of Health and
Human Services. The panel strongly believes that these broader issues must
be addressed in the context of this report because the successful implemen-
tation of an integrated and effective National Health Care Data System will,
to a large extent, depend on their resolution.
The panel believes that the concept and operations of the proposed
National Health Care Data System should undergo external review by a
panel of experts from outside the government. Furthermore, the panel has
found that the internal analytical capabilities of NCHS, especially in its
survey divisions, have been reduced in the past several years. This not only
affects the timely analysis and interpretation of data collected, but also
leads to the inability to anticipate important issues and to respond to them.
The panel believes that, if not corrected, this deficiency will impair the
ability of NCHS to implement the National Health Care Data System.
The panel further notes the fragmented state of the federal health statis-
tics activities and concludes that the Department of Health and Human
Services needs to undertake a major review of the vast array of its data
collection activities related to health care with the objective of developing a
comprehensive and coordinated plan for establishing an efficient and cost-
effective structure and organization for health care statistics.
Finally, the panel emphasizes that without infusion of substantial new
resources the course of action charted in this report cannot be accomplished,
and the nation will continue to fall further behind in meeting its health care
data needs. Health care data are of interest not only in terms of the general
functions of NCHS, but more importantly in teas of specific use and inter-
est in the establishment and evaluation of federal policy in health care. The
panel considers the immediate implementation of its recommendations jus-
tified in view of the importance of health care information to the Congress and
the executive branch in the establishment and evaluation of federal health care
policy, as well as to the states and society as a whole as they cope with the
significant changes in the organization and delivery of health care.
The panel recommends a considerably expanded data collection effort
and a redesign strategy that will yield significantly more useful data than
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TOWARD A NATIONS HEALTH CARE SURVEY
are currently available. An underfunded program cannot meet the needs of
society effectively. In the final analysis, the commitment and institutional
support of the secretary of the Department of Health and Human Services,
the Office of Management and Budget, and the Congress are all essential to
the successful implementation of a comprehensive integrated health care
statistics strategy.
RECOMMENDATIONS
On the basis of its findings and conclusions the panel provides three
categories of recommendations: (1) on the plan submitted by NCHS for
review, (2) on the design framework for an integrated National Health Care
Data System, and (3) on coordination, advice, and resource considerations.
The text of the panel's recommendations, grouped according to these cate-
gories, follows, keyed to the chapter in which they appear in the body of the
report.
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EXECUTIVE SUMMARY
RECOMMENDATIONS ON THE NCHS PLAN
Recommendation 3-1: The panel endorses the NCHS
plan to conduct the provider surveys on an annual basis.
Recommendation 3-2: The panel recommends that NCHS
extend its coverage of providers of health care to in-
clude a fuller range of health providers than currently
planned both physicians and nonphysicians, all of whom
provide some form of health care. The panel further
recommends that the universe for the hospital care com-
ponent be extended to include long-term care hospitals
and federal hospitals.
Recommendation 3-3: The panel recommends that NCHS
put in place a mechanism for developing criteria and for
setting data collection priorities across the full range of
health care providers and service settings, and that this
mechanism and process be dynamic and include periodic
review and revisions of both the criteria and coverage as
necessary.
Recommendation 3-4: The panel recommends that the
National Health Care Survey include collection of per-
son-based longitudinal information, expanding the data
collected to include, but not be limited to, information
on the health care received, costs and gross expendi-
tures for health care, and outcomes.
Recommendation 3-5: The panel endorses the NCHS
decision to use the primary sampling units from the Na-
tional Health Interview Survey for the National Health
Care Survey, to retain their existing definition at this
time, and to continue the needed research in this area.
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TOWARD A NATIONAL HEALTH CARE SURVEY
RECOMMENDATIONS FOR A DESIGN FRAMEWORK
FOR THE NATIONAL HEALTH CARE DATA SYSTEM
Recommendation 4-1: The panel recommends that pro-
viders other than those currently covered i.e., short-
tenn hospitals, off~ce-based physicians, and nursing homes—
be surveyed using provider samples generated from the
list of providers visited by respondents to the National
Health Interview Survey as identified through the sur-
vey screening.
Recommendation 4-2: The panel recommends that NCHS
examine the feasibility and utility of selecting its sam-
ples of short-term hospitals and office-based physicians
from inventories of each of these types of providers vis-
ited by respondents to the National Health Interview Survey
and identified through the survey screening.
Recommendation 4-3: The panel recommends that NCHS
develop and implement, as a component of the National
Health Care Data System, a continuous, longitudinal survey
of health care utilization and expenditures, and their health
care providers, using cohorts of individuals selected from
among National Health Interview Survey respondents.
Recommendation 4-4: The panel recommends that NCHS
develop and implement a survey capability to obtain lon-
gitudinal data for cohorts of residents of nursing homes,
while institutionalized, on their use of and expenditures
for health care received from providers other than the
nursing home itself. NCHS should explore the possibil-
ity of obtaining this information for residents of other
long-term institutions.
Continued
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EXECUTIVE SUMMARY
Recommendation 4-5: The panel recommends that NCHS
undertake research in collaboration with the Agency for
Health Care Policy and Research to examine the meth-
odological issues of definitions and classifications and
to determine the feasibility of using the National Health
Interview Survey and the National Nursing Home Sur-
vey to generate a sample of episodes of illness; the sam-
ple should be followed longitudinally to collect data on
the associated medical care use for the episode from
both the sample of individuals and the health care pro-
viders.
Recommendation 4-6: The panel recommends that NCHS
conduct research and develop procedures for data sys-
tems that enable linkage of health care outcomes to health
care received and health care costs. The panel further
urges NCHS to examine the feasibility of collecting health
insurance claims files from both private and public in-
surers for individuals included in the samples from the
National Health Interview Survey and the National Nursing
Home Survey selected to study health care utilization
and costs.
Recommendation 4-7: The panel recommends that NCHS
take into serious consideration the recommendations in
this report relating to the National Health Care Data
System before reaching final decisions on the 1995 re-
design of the National Health Interview Survey.
Recommendation 4-8: The panel recommends that NCHS
establish a research agenda to determine the feasibility of
its recommended course of action. If found feasible, the
panel recommends that NCHS adopt the proposed design
framework (with adjustments as warranted by the re-
search) for a National Health Care Data System.
13
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4
TOWARD A NATIONAL HEALTH CARE SURVEY
RECOMMENDATIONS RELATING TO COORDINATION
AND RESOURCE CONSIDERATIONS
Recommendation 5-1: The panel recommends that a
continuing external oversight group of health care pro-
fessionals be established to monitor and advise NCHS
and the Department of Health and Human Services on
the overall directions and scope and content of the Na-
tional Health Care Data System, in the context of the
agenda set forth by the panel in its proposed strategy for
implementation.
Recommendation 5-2: The panel recommends that an
external technical committee of relevant experts be es-
tablished during the planning and implementation phase
to help plan and review the research needed to complete
the proposed design; to identify the priorities for feasi-
bility and research projects; and to monitor the progress
made by NCHS in completing the research agenda and
implementing the recommended design for a National
Health Care Data System on schedule.
Recommendation 5-3: The panel recommends that the
Department of Health and Human Services establish an
ad hoc external high-level committee, comprised of per-
sons who have distinguished themselves in the field of
health care statistics, survey and sampling methods, and
the provision of health services, to undertake a compre-
hensive review of He health care statistics activities through-
out the department and report its findings directly to the
secretary.
Recommendation 5-4: The panel recommends that the
Department of Health and Human Services ensure that
sufficient resources for maintaining capability for anal-
ysis and dissemination of the data collected be included
in the resources allocated for the National Health Care
Data System.
Recommendation 5-5: The panel recommends that ad-
equate funds for operating the National Health Care Data
System, estimated to be no less than $25-30 million per
year, be included in the appropriated budget of the Na-
tional Center for Health Statistics.
Representative terms from entire chapter:
care survey
