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APPENDIX C
Federal Health Data Sources
The United States possesses one of the world's leading statistical sys-
tems, its current status having evolved over the course of the nation's histo-
ry. As the role of the federal government has increased over the years, so
has the demand for more and better statistics at the national and subnational
levels. The federal statistical system in the United States is decentralized,
with authority and responsibility for statistical activities spread among sev-
eral agencies of the government.
There exists an abundance of statistical information related to the health
status and the health care industry of this nation. A number of federal and
state agencies gather and use health-related data. The private sector is also
a major collector and user of such data. Yet, as shown in the body of the
report, the current national data systems do not provide the information
needed to assess the effect of changes in the financing, organization, and
delivery of health care or the impact of socioeconomic trends on the quali-
ty, cost, and outcomes of care.
An understanding of the strengths and weaknesses of the current status
of federal statistics and the prospects for continued development and progress
in future years requires knowledge of the genesis of these systems and an
understanding of the social, economic, public health and political factors
that have led to a gradually increasing involvement of both the executive
and legislative branches of the federal government in the collection and
maintenance of health statistics.
125
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126
APPENDIX C
EVOLUTION OF FEDERAL lIEALTlI STATISTICS
For many years after the formation of the federal union, responsibility
for the collection of statistics in the health field was located primarily at the
level of the state and local governments. Federal involvement was limited
to a large extent to meeting the information needs for the most pressing
health and related problems affecting the country and to the collection of
vital records from the states.
Notification of diseases in this country began in the colonial times at
the local level, particularly in port cities. However, the collection of the
data was limited to times when epidemics of pestilential diseases threatened
or were in progress. Statewide notification was first instituted in 1883,
when Michigan passed a law requiring reporting of certain diseases (Bureau
of the Census, 1960~.
In response to the need for nationwide information on epidemic diseas-
es, Congress passed a law in 1878 authorizing the collection of morbidity
reports for use in connection with quarantine measures against pestilential
diseases such as cholera, smallpox, plague, and yellow fever. This law was
the start of the responsibilities of the Public Health Service (PHS) in the
collection of data on communicable diseases and the surveillance of the
incidence and distribution of diseases. A year later, a specific appropriation
was made for such collection.
In 1893, Congress passed another law that provided for the collection
of information each week from state and municipal authorities throughout
the United States.
By the 1950s national health data sources were primarily comprised of
the reporting by state and territorial authorities of morbidity statistics for
communicable diseases and their surveillance and the death registration
system. Completeness of reporting continued to vary greatly, and many
illnesses were not reported to the authorities. Various health programs pro-
duced statistics specific to their programs, but they were neither national in
scope nor comparable for different states. CulTent data that were represen-
tative of the general health status of the U.S. population were not available
regularly.
A national health survey was conducted by the Works Project Adminis-
tration in 1935-1936 as part of a comprehensive National Health Inventory,
covering 700,000 urban families in the depressed economic conditions of
the time. The survey had two purposes—to promote knowledge of the
population's health status and to create jobs for the unemployed.
Twenty years later, statisticians inside and outside the government were
still relying primarily on the 1935-1936 National Health Survey and a series
of supplemental studies carried out in the 1940s and early l950s as the
basis for estimating the current level of illness and disability in the United
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FEDERAL HEALTH DATA SOURCES
127
States.i Those data had become outdated. During the interim much had
happened to change the country, the people, and their health status. The
Great Depression was over; the country had gone through a major war and
had recovered; the population of the United States was more urbanized;
medical care had advanced and the people's health had improved.
During that period major advances had been made in statistical survey
theory and methodology. The late 1940s and the early l950s saw a series
of local surveys conducted by various state arid private organizations to
study morbidity, disability, and handicapping conditions. Many of these
studies broke new ground but none was national in scope. The Bureau of
the Census and the PHS had provided advice to those carrying out these
local surveys.
It was clear by the early l950s that the federal government's role in
health statistics could best be carried out by providing leadership in devel-
opment of a national health data resource based on the probability sampling
of households.
The National Health Survey Act
In 1953 the National Committee on Vital and Health Statistics (NCVHS)2
recommended that a national health survey be established on a permanent
basis. (NCHS, Ser.4, No.5, 1966) In 1956 Congress enacted PL 84-652,
the National Health Survey Act (reproduced in Appendix D). The act au-
thorized a three-part program: a continuing survey using probability sam-
pling methods, special studies, and methodological studies. It authorized
the surgeon general to make available technical advice and assistance on
the application of statistical methods in health and medicine.
The content of the program of the National Health Survey was influ-
enced by the varied nature of the data needed and the requirement in the act
that corresponding information be obtained for both the well and the ill
population. The National Health Survey was conceived as a program of
surveys, with its objectives and approaches being flexible to adapt to chang-
ing needs for data and advances in statistical method. The activities of the
National Health Survey as it is currently comprised are divided into three
1 these studies were supplements to the Census Bureau's Current Population Survey, re-
quested by the Social Security Administration and the Public Health Service. The supplement
in 1943 (repeated in 1949 and 1950) dealt with the prevalence of disability, and another in
1951 dealt with the prevalence of arthritis. These were the first applications of national
probability sampling of the population to the measurement of health.
2The U.S. National Committee on Vital and Health Statistics was established in 1949 by the
surgeon general of the U.S. Public Health Service to put into effect a recommendation of the
First World Health Assembly. On July 23, 1974, this committee was legislatively established
under Section 306(k) of the Public Health Service Act (PL 93-353).
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128
APPENDIX C
major parts, with data collected from three major types of sources. These
are (1) the Health Interview Survey, (2) the Health Examination Survey,
and (3) the Health Records Surveys.
A year after the passage of the National Health Survey Act, the House-
hold Health Interview Survey (later renamed the National Health Interview
Survey) began with the objective of producing general data on the nation's
health. For several years this Household Health Interview Survey was the
only major activity of the National Health Survey while the special studies
also authorized by the law were being developed. In 1959, a second major
component of the National Health Survey, the Health Examination Survey,
was started, aimed at gathering health data by means of a physical examina-
tion of a sample of the population, and reached full-scale data collection by
spring 1961. Special studies also authorized by the law were being devel-
oped. By 1961 several of the survey activities had begun that later made up
the Health Records Survey program.
CURRENT DATA SoURCES3
The federal health statistics system, like the federal statistics system as
a whole, is decentralized across the federal government. The majority of
health statistical activities are undertaken by the Department of Health and
Human Services, although the Department of Defense, the Veterans Admin-
istration, the Environmental Protection Agency, the Bureau of Labor Statis-
tics, and other agencies collect and use health statistics in carrying out their
respective functions.
Within the Department of Health and Human Services, the organization
and decision-making structure for health statistical activities is further de-
centralized among the various organizational components of the department
that have distinct responsibilities for gathering data directly related to their
. . . .
program responsl '1 ltles.
The section below briefly describes the data systems that these agencies
operate that either contribute, or could contribute, to the understanding of
the dynamics of our health delivery system and its impact on the health
status of the American people. No attempt is made to provide an exhaustive
listing or summary of all the health statistical activities carried out by feder-
al agencies and programs. Only selected statistical activities of the Nation-
al Center for Health Statistics (NCHS) and the department relevant to this
present study are described.
~ .
The information in this section is based on' and excerpted frond publications and other
documents of the agencies of the federal government. These sources are provided at the end of
the report.
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FEDERAL HEALTH DATA SOURCES
National Center for Health Statistics
129
NCHS is the focal federal agency for the production, analysis, and
dissemination of general-purpose health statistics. It is recognized as one
of the principal statistical agencies of the federal government. The center
was established in 1960 when the National Office of Vital Statistics and
the National Health Survey Program in the Division of Public Health Methods
were placed in one agency within the U S. Public Health Service. Since
its creation, the center has been moved to various locations within the
organizational structure of the Public Health Service. Most recently, in
1987, it was placed as one of the Centers in the Centers for Disease
Control (CDC).
Section 306 of the Public Health Service Act establishes the center in
the Department of Health and Human Services and specifies that it shall
collect statistics on:
.
.
.
The extent and nature of illness and disability of the population of
the United States (or of any groupings of the people included in the
population), including life expectancy, the incidence of various acute
and chronic illnesses, and infant and maternal morbidity and mor-
tality;
The impact of illness and disability of the population on the econo-
my of the United States and on other aspects of the well-being of
its population (or such groupings);
· Environmental, social, and other health hazards;
Determinants of health;
· Health resources, including physicians, dentists, nurses, and other
health professionals by specialty and type of practice, and the sup-
ply of services by hospitals, extended care facilities, home health
agencies;
.
.
Utilization of health care, including (1) ambulatory health services
by specialties and types of practice of the health professionals pro-
viding such services and (2) services of hospitals, extended care
facilities, home health agencies, and other institutions;
Health care costs and financing, including the trends in health care
prices and cost, the sources of payments for health care services,
and federal, state, and local governmental expenditures for health
care services; and
Family formation, growth, and dissolution.
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130
National Health Interview Survey
APPENDIX C
The National Health Interview Survey (NHIS) is the principal source of
information on the general health status of the civilian, noninstitutionalized
population of the United States. The NHIS is a cross-sectional household
interview sample survey conducted annually since 1957. Interviews are
conducted each week throughout the year. The survey follows a multistage
probability sampling of households. It is designed in such a way that the
sample scheduled for each week is representative of the target population
and the weekly samples are additive over time.
The NHIS redesign in 1985 included a reduction of the primary sam-
pling units (PSUs) from 376 to 198 for sampling efficiency and an oversam-
pling of the black population. Data are collected from approximately 50,000
households including about 130,000 persons in a calendar year.
The survey provides national estimates on the incidence of acute illness
and accidental injuries, the prevalence of chronic conditions and impair-
ments, the extent of disability, the use of medical services, and other health-
related topics by demographic and socioeconomic characteristics.
The questions in the core part of the questionnaire are asked each year.
They solicit information to measure illness and injuries, days of disability
including bed-days, work-loss days, school-loss days, and other days lost
due to acute or chronic conditions. Included in the core are questions on
limitation of activity caused by chronic conditions or impairments, hospital-
izations, doctor contacts, perceived health status, as well as the social, eco-
nomic, and demographic characteristics of the interviewed person. Ques-
tions on dental visits were also part of the core from 1975 through 1981.
The core questionnaire includes six lists of chronic conditions. Each
condition list concentrates on a group of chronic conditions involving a
specific system of the body, such as digestive, skin and musculoskeletal,
circulatory, and respiratory. Prior to 1978, questions on only one condition
list were asked each year. Beginning in 1978, each of six representative
subsamples has been asked questions based on one of the six lists of chronic
conditions. In this manner national estimates on each of the six body
systems are obtained during the same interview year.
Questions on current health topics are included in supplements to the
core questionnaire and change from year to year. They have been included
in the NHIS since 1959, permitting the survey to collect information on a
wide variety of health topics and to be responsive to the country's changing
information needs. Because a supplement is added to the ongoing NHIS,
which is an established vehicle resulting in statistically reliable data for the
U.S. population, it is an efficient way to measure on a large scale and in a
timely manner a topic of current concern. Some supplements, such as
health insurance and out-of-pocket health expenditures, are repeated period-
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FEDERAL HEALTH DATA SOURCES
131
ically to allow measurement of change over time. For instance, supple-
ments in 1979 were included on immunization, smoking, home health care,
eye care, residential mobility, and retirement income. In 1980, the supple-
ments on home health care, residential mobility, and retirement income
were continued and a supplement on health insurance was added. In 1981,
a child health supplement was included throughout the year. The 1982
NHIS included supplements on health insurance and preventive care. The
1983 NHIS contained questions on alcohol, dental care, physician services,
and health insurance. In 1984 the supplement was devoted to health issues
of aging; in 1985, health promotion and disease prevention; in 1986, health
insurance, dental health, vitamin and' mineral intake, longest job worked,
and functional limitations; in 1987, cancer risk factors and child adoption;
in 1989, mental health. Because of budgetary constraints, beginning in
1985 the supplements have been funded by the agencies requesting the
.
special topics.
With acquired immunodeficiency syndrome (AIDS) reaching epidemic
proportions in the United States, and with no cure or vaccine to prevent
infection by the virus at this time, a supplement on AIDS knowledge and
attitudes was initiated as part of the 1987 NHIS in order to determine the
level of knowledge of the U.S. population and to help assess the effective-
ness of educational campaigns. This supplement with necessary modifica-
tions has been continued throughout 1988, 1989, 1990, and 1991 and will
provide continued measurement of the public's knowledge and attitudes
about AIDS and changes in these characteristics over time.
~ . ~ ~ ~ ~ _ ~ TO AT TV
National Health and Nutrition Examination Survey
The National Health Survey Act authorized special studies in addition
to the continuing household interview survey. Furthermore, the recommen-
dations of the National Committee on Vital and Health Statistics on the
subject had also envisioned special studies to include one "to obtain data on
undiagnosed and non-manifest diseases" (NCHS, Ser.1, No. 4, 1973~. The
first Health Examination Survey (HES) was launched in 1959 and was com-
pleted in 1962. A traveling staff and mobile examination units were em-
nloYed for the survey. Data were collected through direct standardized
1~ _1 ___ 1~~ ~~_~~ BAND LEA ~^qel~r~m~ntc An
physical examinations, clinical and laboratory LUStS, ~~U Ill~a~uiclll~l~L~ vie
the total prevalence of certain chronic diseases as well as the distributions
of various physical and physiological measures, including blood pressure
and serum cholesterol levels.
year cycles through the 1 960s.
A decade later the survey was restructured and expanded to include
measurements of nutritional status of the population and subsequent moni-
toring of changes in that status over time. This change reflected the coun-
The survey was conducted at two- to four-
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32
APPENDIX C
try's and the federal government's shift of emphasis from illness to health
maintenance. The survey name was changed to the National Health and
Nutrition Examination Survey (NHANES). The first cycle of this expanded
survey, NHANES, was initiated in 1970 with data collection beginning in
1971.
To date, five nationwide surveys using health examination procedures
have been completed since the inception of this survey program in 1960. In
1982, the survey was directed toward persons of Hispanic origin or descent
and was conducted in areas with high concentration of Hispanic population.
At the present time, NHANES III is in the field. As with the earlier sur-
veys, NfIANES III involves interviews, physical examinations, and bio-
chemical and hematological tests of a representative sample of the U.S.
population.
The objectives of both the early HES and the NHANES have been
collection of data that can be obtained best or only by direct physical exam-
ination, clinical and laboratory tests, and related measurement procedures.
Prevalence data are collected for specifically defined diseases or conditions
of ill health and normative health-related measurement data are collected
that show distributions of the total population with respect to particular
parameters, such as blood pressure, visual acuity, and serum cholesterol
level.
The sample design for all the HES and NHANES cycles has been multi-
stage, highly clustered probability samples to provide representative nation-
al estimates. All of the samples are stratified by broad geographical regions
and by population density grouping.
At the present time, NHANES III is in the field. As with the earlier
surveys, NHANES III will involve interviews, physical examinations, and
biochemical and hematological tests of a representative sample of the U.S.
population.
Health Records Survey Program
Soon after the establishment of the National Health Interview Survey
and the Health Examination Survey, it became obvious that information on
hospitalized illness and injury, out-of-hospital medically attended illness,
long-term institutionalized conditions, and data on the use of providers of
services and facilities were either not available on a national basis or were
inadequate.
As a consequence, by 1960, when the National Health Survey and the
National Office of Vital Statistics were combined to form the National Center
for Health Statistics, developmental work already had begun for surveys
based on records of health facilities and providers of health services.
The Health Records Survey (HRS) program, was conceived originally
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FEDERAL HEALTH DATA SOURCES
133
as one of the three major data collection program activities of the National
Health Survey. The surveys under this program were designed to augment
the NHIS and NHANES by providing comprehensive statistics on the health
of the institutionalized population as well as on the use of all types of
health facilities and services.
As stated by NCHS at the time of development of the HRS program, an
important distinction between the Health Records Survey program and the
other programs of the National Health Survey was that the data are obtained
from the provider or facility providing service instead of from the recipient
of the service. The rationale for the reliance on the provider, as stated by
NCHS, was that providers can have the most accurate and detailed data on
diagnosis and treatment, and that providers are a cost-effective source for
identifying events such as hospitalization, surgery, and long-term institu-
tionalization, which are relatively rare events in the total population.
The original concept of the HRS encompassed records from all types of
medical facilities and institutions, including those from such facilities as
hospitals, clinics, dispensaries, physicians' and dentists' offices, and nurs-
ing homes. In practice, however, the data are limited to that obtained in the
four current surveys: National Hospital Discharge Survey, National Ambu-
latory Medical Care Survey, National Nursing Home Survey, and the Na-
tional Master Facility Inventory.
The major part of the data collected is based on existing records. Mechanisms
used to obtain the data include abstracts of medical records of institutions,
completion of patient encounter forms by physicians, compilation of data
from states and professional associations, and purchase of data from private
abstract services.
The four component surveys of the HRS, as they have evolved over the
years, have provided data for monitoring the supply, organization, and use
of health care in specified service setting categories. It is important to note
here that these surveys provide data on events or on the characteristics of
the provider in a given category. In the 1970s the term Health Records
Survey Program was dropped; these surveys began to be referred to as
provider surveys and form the basis of the proposed National Health Care
Survey, the subject of this study. The four current records, or provider
surveys, are described briefly below.
National Master Facility Inventory. As a first order of business to
implement the records-based survey program, NCHS developed a current
unduplicated list of all facilities for inpatient care in the United States. The
National Master Facility Inventory (NMFI) is this list. The NMFI has
served as the universe or sampling frame for the health records surveys.
Conceptually it includes all types of facilities within scope of the HRS
program, with the flexibility to include other types of establishments or
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34
APPENDIX C
health facilities as the program expands. It also serves as a source of statis-
tics on the number, type, and distribution of inpatient facilities in the Unit-
ed States.
The program of the NMFI includes the development and maintenance
of a list of names and addresses of all facilities or establishments within its
scope and the collection of information that describes them with respect to
their size, type, and current status of business. The information not only
provides a basis for stratifying the NMFI into homogenous groups for the
purpose of sampling designs, but also provides important national statistics
about the availability of such facilities nationwide.
The scope of the inventory in its initial stage of development included
all hospitals in the United States with 6 or more beds, as well as all resident
institutions, except for nursing or personal care homes with less than 3
beds.
Institutions included in the NMFI were establishments that were in
business to provide medical, nursing, personal, or custodial care to groups
of unrelated individuals who have no usual place of residence elsewhere.
Such as:
(1) Establishments that provided nursing care to the aged, infirm, or
chronically ill. These included places commonly referred to as nursing
homes, homes for the aged, rest homes, boarding homes for the
aged, and homes for the needy such as almshouses, county homes,
and poor farms. The primary factor that determined if an establish-
ment was in scope was its function of providing some kind of care
besides room and board.
Residential schools or homes for the deaf.
(3) Residential schools or homes for the blind.
(4) Homes for unwed mothers.
(5) Orphan asylums and homes for dependent children.
(6) Homes for crippled children.
(7) Homes for incurables.
(8) Residential schools or detention homes for juvenile delinquents.
(9) Prisons, reformatories, and penitentiaries that are operated by the
federal or state governments.
The NMFI did not include special dwelling places or group; darters
such as hotels, private residential clubs, fraternity or sorority houses, mon-
asteries, nurse's homes, flophouses, or labor camps.
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FEDERAL HEALTH DATA SOURCES
Data items collected in the NMFI included:
.
Ownership of the institution,
· Type of services provided,
Number of beds,
Number and kinds of staff,
Patient census,
Annual number of discharges, and
Annual number of admissions.
135
The NMFI has been conducted periodically since 1963. The inventory
has been kept current by the periodic addition of names and addresses
obtained from state licensing and other agencies for all newly established
inpatient facilities. In addition, annual surveys of hospitals and periodic
surveys of nursing homes and other facilities are used to update name and
location, type of business, number of beds, and number of residents or
patients in the facilities and to identify those facilities that have gone out of
business.
In the 1970s, all data were obtained through the state statistical agen-
cies participating in the Cooperative Health Statistics System (CHSS). Most
of these states, however, had data only on nursing and related care homes.
Some of the CHHS states collected data only for nursing homes; NCHS
surveyed the other related care homes directly for these states. Hence the
scope was limited to data on hospitals and nursing and related care homes.
After the elimination of CHHS, NCHS did not go back to collecting data
directly from hospitals. Hospital data are purchased from the American
Hospital Association and SMG Marketing Group, Inc. In the 1980s the
NMFI was once again centralized when the Inventory of Long Term Care
Providers was conducted in 1986 (information based on telephone conver-
sations with NCHS staff).
The scope of the 1991 NMFI, renamed the National Health Provider
Inventory (NHPI), has been expanded to include information about facilities
providing health care, including hospitals, skilled nursing and long-term
care units of hospitals, nursing and related care homes, facilities that pro-
vide some kind of personal care, board and care or domiciliary care (such as
residential care homes, group homes, homes for the aged, family care homes,
adult foster care homes, personal care homes, adult congregate living facil-
ities, residential community care facilities, domiciliary care homes), homes
for mentally retarded or developmentally disabled people, homes for the
mentally ill (such as halfway houses, residential centers for emotionally
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140
APPENDIX C
Subsequent to the two ad hoc surveys in the 1960s, three national nurs-
ing home surveys have been conducted. The first national survey was
conducted in 1973-1974, the second was conducted in 1977, and the third
was conducted in 1985. The next survey is scheduled for 1995.
The 1985 NNfIS was a sample survey of nursing and related care homes,
their residents, discharges, and staff in the conterminous United States that
regularly provide nursing or personal care services to residents, regardless
of the level of service provision or the certification status of the facility.
Facilities were either free-standing establishments or nursing care units of
hospitals, retirement centers, or similar institutions maintaining financial
and employee records separate from those of the larger institutions. Resi-
dential care facilities were excluded from the scope of the survey, as were
those serving only persons with specific health problems, such as mental
retardation or alcoholism.
A stratified two-stage probability sample design was used, the first
stage being selection of facilities and the second stage being selection of
residents, discharges, and registered nurses from the sample facilities.
Data were collected on four major areas:
(1) Facility. Inflation was obtained by personal interview with the
administrator and by mail-back questionnaires. Topics covered in-
cluded: (1) size, ownership, license and Medicare and Medicaid
certification status, number of beds, services offered; (2) staffing
patterns including characteristics of registered nurses, work sched-
ule, experience, activities in facility, demographic characteristics,
and salary; (3) costs, including total expenses and for major com-
ponents of operation.
(2) Current residents. Topics covered included: demographic charac-
teristics, activities of daily living, status and living arrangements
prior to admission, conditions at admission and at interview, re-
ceipt of services, cognitive and emotional status, charges, sources
of payment, history of nursing home utilization, and hospitalization
during stay.
(3) Discharged residents. Topics covered included: demographic char-
acteristics, history of nursing home utilization, hospitalization dur-
ing stay, status at discharge, conditions at admission and discharge,
sources of payment. Resident information was obtained by personal
interview with the nurse who referred to the medical record.
(4) Follow-up. Follow-up information on the two patient samples was
collected by means of a computer-assisted telephone interview with
a next of kin of the current or discharged resident. The next of kin
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FEDERAL HEALTH DATA SOURCES
141
interviewed was identified in the current resident and discharged
resident questionnaires and included relatives, guardians, and any-
one familiar with the sampled resident.
Topics covered included: (1) subject's living arrangements, health,
and functional status during the period preceding the admission, (2)
history of previous nursing home use activities of daily living, (3)
current status and living arrangements, and (4) Medicaid spend-
down.
In an attempt to meet the increasing demand for information related to
the dynamics of long-term care use, follow-up data were collected in the
1985 NNfIS covering a period of one year subsequent to the initial nursing
home admission. Since many episodes of alternating institutional, acute
hospital, and community care are of considerably longer duration, it became
clear that the period of observation needed to be extended. Moreover, data
compiled on an event basis do not reveal the interconnections within epi-
sodes of illness or utilization or provide information on transitions between
hospital, nursing home, and community care. In response to this need, the
National Nursing Home Survey Follow-up (NNHS follow-up) was estab-
lished as a collaborative project between the NCHS and the National Insti-
tute on Aging.
The NNHS follow-up is a longitudinal that follows a cohort of surviv-
ina current residents and discharged residents sampled from the 1985 NNHS.
The primary purpose of the follow-up study is to provide data on the flow
of persons in and out of long-term care facilities and hospitals. The study
obtains lon;,itudinal information not readily available in the medical record,
such as the resident's health and functional status prior to admission, the
reason for admission, and a history of previous nursing home admissions,
the resident's current functional status, current living arrangements, and
nursing home and hospital use subsequent to the last contact and sources of
payment.
The NNHS follow-up has initiated three additional contacts with the
cohort since the 1985 NNHS. Interviews for all three waves were conduct-
ed using a computer-assisted telephone interview (CATI) system. Data
collection and data entry are concurrent and computer-controlled.
The first wave of the follow-up was conducted between August and
December 1987. The study population consisted of all sampled residents
who were still alive, approximately 6,600 subjects. If the subject could not
participate, interviews with proxy respondents (primarily next of kin) were
conducted. For subjects residing in facilities, administrators or other facili-
ty personnel were interviewed.
Wave II of the NNHS follow-up was conducted from July to November
1988, approximately 12 months after the completion of the first wave, and
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142
APPENDIX C
involved approximately 4,000 subjects. The same questionnaire and the
CATI system were used for both waves. Respondents were asked about the
subject's vital status, living arrangements, and nursing home stays, hospital
stays, and sources of payment for stays occurring between the wave I and
wave II interviews. For deceased residents the information on cause of
death was obtained through the National Death Index.
Interviewing for wave III of the follow-up began the first week of
February 1990 and was completed in April 1990. Wave III extends the
period of observation for surviving residents in the 1985 NNHS for an
additional 18 months and involves approximately 3,000 subjects. The same
questionnaire, CATI system, and procedures used in the previous two waves
were again applied to wave III. In addition, seven new questions are asked
at the end of the interview concerning the disposition of the subject's own
home.
Other Related Health Surveys of the Department of
Health and Human Services
As stated earlier, many other major data systems are maintained in the
other DHHS agencies to meet their special purpose and programmatic needs
for statistical information. Some of the major potentially related data sys-
tems are briefly described below.
Centers for Disease Control
The Centers for Disease Control (CDC) is the federal agency within the
Public Health Service charged with protecting the public health of the na-
tion by providing leadership and direction in the prevention and control of
diseases and other preventable conditions and responding to public health
emergencies. It is composed of nine major components, one of which is the
National Center for Health Statistics.
Behavioral Risk Factor Surveillance System. This surveillance system
provides official state health agencies with the funding, training, and con-
sultation necessary to permit them to routinely collect behalf Oral risk factor
information. The data items include weight control, hypertension, physical
activity, obesity, mammography, alcohol consumption, seatbelt use, tobacco
use, HIV/AIDS, preventive health practices, and routine demographic infor-
mation such as age, sex, race, and education.
In all, 46 states and jurisdictions participate in this system, which was
created in the early 1980s. Each of the states conduct surveys of their
noninstitutionalized adult population during the course of the year with
600-3,000 respondents interviewed in each state yearly. Telephone inter-
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FEDERAL HEALTH DATA SOURCES
143
viewing is employed, and states can add modules of questions to meet
special needs. States use the data from this system to develop and evaluate
programs and to track progress in reducing behavioral risk factors over
time.
Agency for Health Care Policy and Research
The Agency for Health Care Policy and Research was established in
1989 by the Omnibus Budget Reconciliation Act (42 U.S.C. 299) as the
successor to the National Center for Health Services Research and Health
Care Technology Assessment. The agency is the federal government's fo-
cal point for health services research.
National Medical Expenditure Surrey. The 1987 National Medical
Expenditure Survey (NMES), conducted by the Agency for Health Care Poli-
cy and Research, continues a series of national health care expenditures sur-
veys. The last two were conducted in 1980 and 1977. The primary purpose
of NMES is to provide the executive branch, the Department of Health and
Human Services, and the Congress with national estimates of the use of and
expenditures for health care services and of health insurance coverage.
The 1987 NMES is comprised of three components: (1) the Household
Survey, (2) an institutional population component that includes the popula-
tion resident in or admitted to nursing homes and facilities for the mentally
retarded over the course of the survey year, and (3) the Survey of American
Olin and Alaska Natives (SATAN), which includes all persons eligible
for care through the Indian Health Service and living on or near reserva-
tions. Because of the importance of long-term care for the nation's health
policy agenda, NMES also provides national estimates on long-term care
services and expenditures.
Taken together, the three mayor components of NMES provide com-
prehensive, population-based measures of health and functional status, es-
timates of insurance coverage and ot the use of services, expenditures,
employment, income, and sources of payment for the calendar year 1987.
The long-term care supplement provides estimates of persons with func-
tional disabilities and impairments and their use of formal home and com-
munity services, as well as the burden felt by family and friends of pro-
. .
Yang care.
Although these periodic expenditure surveys provide the most compre-
hensive data on health expenditures and insurance coverage, they are con-
~ , ~
ducted at infrequent intervals at great cost and are slow to produce accessi-
ble data.
Medicare Beneficiary Health Status Registry. A Medicare Beneficiary
Health Status Registry (MBHSR) is being developed as a collaborative ef-
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APPENDIX C
fort between the Agency for Health Care Policy and Research and the Health
Care Financing Administration. The registry is funded by AHCPR and will
be implemented by HCFA. It will be a longitudinal database containing
information on elderly Medicare beneficiaries obtained by linking health
status information from survey data with HCFA's administrative enrollment
and utilization files. The survey will gather data on approximately 2 per-
cent of the elderly at the time they enter the Medicare program and at
intervals of two to five years thereafter. Data will be gathered of each new
Medicare cohort on risk factors, functional status, sociodemographic vari-
ables, medical history, and quality of life, thus permitting a projection of
their needs. By enrolling successive cohorts over many years, changes in
the health and utilization of new entering groups can be monitored over
time. Through repeated contacts with the same individuals while they are
Medicare beneficiaries, the progression of health and disease can be mea-
sured, the relationship between the Medicare program and the health status
of its beneficiaries can be examined, and the effectiveness of specific health
interventions in influencing the health status of individuals of the group can
be evaluated.
The primary goals of the registry are to provide information on measur-
ing the relationship of Medicare-reimbursed services to the health status of
Medicare beneficiaries; to describe, analyze, and understand health and dis-
ease longitudinally in successive cohorts of Medicare beneficiaries; to de-
scribe, analyze, and understand the use and costs of services, lor~g-term
utilization patterns, and lifetime Medicare costs of individual coh`~;~s: to
monitor access to care in special populations; to assess the effectix Bless
and impact of specific medical and surgical interventions on the health,
quality of life, well- -a. and functional status of Medicare beneficiaries;
and to monitor existing, DlIHS "Healthy People 2000" objectives and devel-
op additional ones.
Design and field testing began in September 1990. Implementation is
expected in fiscal 1993.
Agency for Alcohol, Drug Abuse,
and Mental Health Administration
The Agency for Ale- - ~l, Drug Abuse, and Mental Health Administra-
tion (ADAMHA) province a national focus for the federal effort to increase
knowledge and to promote effective strategies in handling health problems
and issues associated with the use and abuse of alcohol and drugs and with
mental illness and mental health. Its responsibilities include gathering and
analyzing data about the extent of alcohol, drug abuse, and mental health
problems and the national response to these needs in terms of planning, estab-
lishing, and evaluating alcoholism, drug abuse, and mental health programs.
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145
Mental Health Statistics. The National Institute of Mental Health (NIMH)
in the Alcohol, Drug Abuse, and Mental Health Administration has been
collecting data on inpatient care of the mentally ill in public and private
mental hospitals and in psychiatric wards of general hospitals since 1947,
when it took over that function from the Bureau of the Census, which had
been collecting information on hospitalization of the mentally ill since 1840.
Recognizing that the annual census alone could not provide the range of
basic data required on the facilities providing, inpatient mental health care,
over the years NIMB has taken several steps to correct these shortcomings
and, as needs arose, added other types of care settings to the data collection
effort and instituted a sample survey program to meet specialized needs.
Today NIMH conducts several inventories of mental health organiza-
tions. These data systems are based on questionnaires mailed every other
year to mental health organizations in the United States, including psychiat-
ric hospitals, psychiatric services in nonfederal general hospitals, Veterans
Administration psychiatric services, residential treatment centers for emo-
tionally disturbed children, freestanding outpatient psychiatric clinics, par-
tial care organizations, and freestanding, and multiple care mental health
organizations not elsewhere classified.
Information is collected on types of services provided (inpatient, outpa-
tient, and partial care); number of inpatient beds; number of inpatient, out-
patient, and partial care additions; average daily and end-of-year inpatient
census; patient characteristics; staffing by types of discipline; expenditures;
and revenue by source (1983 and 1986 only). Staffing information is col-
lected as of a sample week at the time the inventory is mailed, and informa-
tion on types of services and beds are collected as of the beginning, of the
next year.
The sample survey program was initiated in 1969 and today includes
~A~;C`c,;~e tm ~tOtP rn''ntv and private mental hospitals, outpatient psychi-
atric services, and Veterans Administration psychiatric services. The pur-
pose of these surveys is to obtain data on the sociodemographic, clinical,
and treatment characteristics of patients served by these facilities. In gener-
aulllla;~o He ~-~—~ ~ .~ ~ ~ rat
.
al these surveys have been conducted approximately every five years for
any specific type of facility. Data are collected on a sample of admissions
from a national sample of facilities for one month in the year on age, sex,
race, marital status, education, prior psychiatric care, type of services re-
ceived, and referral on discharge.
The NCHS historically has not gathered data on mental health facilities
for their National Master Facility Inventory (NMFI). In the late 1960s,
when the expanded and consolidated inventory of mental health organiza-
tions was initiated by NIMH, the two agencies reached agreement that NCHS
would not collect data on mental health facilities for the NMFI, and NIMH
would provide the data collected in their inventory to NCHS for incorpora-
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146
.
APPENDIX C
lion in the NMFI. These data were then added to the NMFI and reported in
the category "other health facilities."
NCHS also has not collected data on the mentally ill on a regular basis
in the general health care sector in the same manner that it collects informa-
tion on general health care. Some information, however, is routinely col-
lected, and other information has been collected on an ad hoc basis if re-
sources are made available by an interested agency. For example:
The National Hospital Discharge Survey collects information on
the mentally ill admitted to short-stay, nonfederal hospitals.
The National Ambulatory Medical Care Survey collects informa-
tion on the mentally ill seen in physicians' offices, including psy-
chiatrists' offices. In the 1991 NAMCS a separate item on depres-
sion is included in the list of diagnoses instead of relying on physicians
to report it.
The National Nursing Home Survey collects information on mental
illness in nursing home residents.
The National Health and Nutrition Examination Surveys have col-
lected depression data. The NHANES-III, currently in the field, is
administering a depression and a manic-depressive instrument.
The 1989 National Health Interview Survey included a supplement
on mental health in collaboration with, and funded by, NIMH. The
overall purpose of this supplement was to estimate the number and
characteristics of chronically mentally ill persons in the civilian,
noninstitutionalized population of the United States. Chronic men-
tal illness is defined by NIMH as "severe and persistent disability
resulting primarily from mental illness." It was not the intent of
this supplement to estimate the prevalence of any particular disor-
der.
Alcohol and Drug Abuse Statistics. ADAMHA has instituted several
studies to obtain data on the prevalence and trends in alcohol and drug
abuse and the treatment facilities. An illustrative few are described below:
The National Household Survey of Drug Abuse is a biennial, national
sample survey of household population age 12 and older. The survey pro-
vides estimates of the lifetime, last year, and current use of marijuana,
cigarettes, and alcohol and attitudes about drug abuse. Youths ages 12-17
and young adults ages 18-25 are oversampled, as are blacks and Hispanics.
The 1988 survey is the ninth in a series that began in 1971 and is based on
personal interviews of a sample of 8,814 persons age 12 and over.
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The National Drug And Alcoholism Treatment Unit Survey (NDA-
TUS) is a national survey of the scope and use of treatment and prevention
services and resources, both privately and publicly funded. This survey is
conducted periodically by the National Institute on Drug Abuse and the
National Institute on Alcohol Abuse and Alcoholism. Information is ob-
tained from over 12,000 treatment, prevention, and service units on types of
services provided, client capacity and census, and funding amounts, as well
as client demographic information. Through this survey a National Directo-
ry of Drug Abuse and Alcoholism Treatment and Prevention Programs is
produced.
The Sample Survey of NDATUS Clients will be a sample survey of
clients drawn from a representative sample of the drug abuse and alcohol
treatment units. The study will provide for the first time data on informa-
tion on the characteristics of alcohol and drug abuse treatment programs
and on types and duration of treatment and collateral client-focused activi-
ties. Client characteristics will include previous treatment history, diagnos-
tic data about drug and alcohol use, amount, patterns, and related impair-
ments. Clients will be reinterviewed at 3 and 15 months to determine
subsequent treatment and changes In use and impairments.
Prevalence and Impact of Alcohol and Drue Abuse Dependence in
Short-term General Hospitals wait be a one-time study to determine the
national prevalence rates of alcohol abuse and alcoholism and polysub-
stance abuse in short-term, general, nonfederal hospitals; it will also deter-
mine the impact of alcohol and other drug abuse and dependencies on hos-
pital resource utilization, charges, and costs.
Drug Abuse Warning Network (DAWN) is a large-scale ongoing drug
abuse data collection system based on information from a nonrandom sam-
cle of emergency room and medical examiner facilities. DAWN collects
informntion only about those drug abuse occurrences that have resulted in a
_
.. ^, _, ~ _ , . . .. ~ _ .,
medical crisis or death. Major objectives include the mon~tonng OT patterns
and trends of drug abuse, identification of substances associated with drug
abuse episodes, and the assessment of drug-related consequences and other
health hazards.
Health Care Financing Administration
The Health Care Financing Administration (HCFA) was established in
1977, placing under one administration the oversight of the Medicare and
Medicaid programs and related federal medical care quality control staffs.
HCFA maintains a comprehensive system of administrative data on Medicare
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APPENDIX C
enrollment, use, diagnosis, provider characteristics, costs, charges, and pay-
ments based on the claims payment files. Administrative data systems, of
course, are a by-product of program administration. Although they have
many potential uses, they cannot tell us, for example, about services cur-
rently not covered by Medicare but that may be likely targets of new legis-
lation, or about sources of payment other than Medicare, people who do not
use Medicare services, or characteristics of beneficiaries that determine their
use of services and costs.
HCFA has taken several steps to enhance the usefulness of its data by
developing systems to obtain information about the health status and socio-
demographic variables of the beneficiaries that can be linked to the admin-
istrative files for analysis. Some of these databases are described below.
Medicare Current Beneficiary Survey. The Medicare Current Benefi-
ciary Survey (MCBS), developed by the Health Care Financing Administra-
tion, is designed to be an ongoing multipurpose survey for use by all com-
ponents of HCFA, the department, and others concerned with Medicare
policy. The MCBS is focused on health care use and expenditure in the
Medicare population and determinants thereof, issues that are of prime im-
portance to HCFA.
The core of the MCBS is a series of interviews of a representative
sample of the Medicare population to obtain information on their patterns of
health service use and cost over time, sources of coverage and payment,
assets and income, demographic characteristics, health and functional sta-
tus, health and work history, and family supports. The same people will be
interviewed three times a year over several years to observe changes in use
with changes in coverage, and to observe processes that occur over time,
such as institutionalization or spending down of assets. The survey will
produce data sets suitable for both longitudinal and cross-sectional analysis.
In addition to the core items, periodic or one-time supplements will be
included in each of the three annual rounds. These will collect information
on relatively stable characteristics of the respondents such as work history,
or on special topics of current policy interest to BCFA, such as access to
care or perceptions about health maintenance organizations. They may also
contain questions that need not be asked each time but may be asked annu-
ally, such as income and assets.
The MCBS sample will consist of 12,000 individuals sampled from the
Medicare Enrollment File to be representative of the Medicare population as a
whole and by age group, enrollment type (aged or disabled), urban or rural
residence, ant among the aced, whether or not institutionalized. The sample
will be adjusted annually for attrition, as well as for newly eligible persons.
Survey data files will be matched to HCFA claims payment and other
administrative records such as the National Death Index, Social Security
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FEDERAL HEALTH DATA SOURCES
149
records, and the Area Resource File. Pilot testing of all forms and proce-
dures has been completed and data collection is under way.
Nursing Home Quality Assessment. The Omnibus Reconciliation Act
of 1987 requires that each resident of a Medicare or Medicaid certified
nursing facility have a periodic standardized, accurate, and reproducible
comprehensive assessment of his or her functional capacity using a Resi-
debt Assessment Instrument (RAI) specified by the state. In addition, the
instrument must include a uniform minimum data set of core elements,
common definitions, and utilization guidelines specified by HCFA.
According to HCFA plans, implementation will be phased in so that
initially the RAI will be administered only for new admissions. Reassess-
ments will be conducted when significant changes in the patient's status
have occurred. The database generated from the RAI over time has the
potential for being used for research purposes in addition to the administra-
tive uses for which the instrument was originally developed, which raises
concerns about the quality and reliability of the data.
Medicare Provider Analysis and Review—Medicare Stay Records. An
Inpatient Hospital Stay Record containing information about a person's
stay in a hospital from admission through discharge is created for 100 per-
cent of Medicare enrollees. Stay records are used to compile many health
insurance utilization tables and the Medicare Provider Analysis and Re-
view (MEDPAR) files. This record contains use information from bills,
demographic information about the enrollee, and Provider characteristics
data. Stay records are also prepared for stays in skilled nursing facilities
(SNF). The SNF stay record is essentially the same as the hospital record.
Part B Medicare Annual Data System. The Part B Medicare Annual
Data System (BMAD) system collects information in each carrier's history
of claims processed. The data are produced and submitted from the Medi-
care claims history for the preceding year and are submitted annually. The
Part B data are provided in four separate files: (1) The Procedures File-
provides an array of every procedure processed showing the relative fre-
quency, submitted charge, and paid amounts. This file dives HCFA detail
on all the services processed by Medicare carriers. (2) The Prevailing
Charge File supplies HCFA with the prevailing charge limits for every
procedure shown on a carrier's procedure file submittal. It allows HCFA to
study and accurately project payment levels. (3) The Provider File—con-
tains line-by-line detail from claims history of procedures rendered by a 1-
percent sample of physician suppliers. These data allow HCFA to study the
impact of actual and physicians' projected program changes on the suppli-
ers. (4) The Beneficiary File—this is a 5-percent beneficiary history sam-
ple file. It contains the detailed claims history of procedures received by
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APPENDIX C
the sample beneficiaries. This file also collects the claims detail for all End
Stage Renal Disease (ESRD) beneficiaries. This file allows HCFA to link,
based on the health insurance claims number, a beneficiary's Part A and
Part B service utilization data.
CONCLUSION
The brief descriptions presented above of only some of the national
health data systems maintained by the federal government provide a clear
illustration of a large number of statistical activities in place and new ones
being developed. Despite these various activities, we still lack important
statistical information needed for monitoring and evaluating the important
changes occurring in the availability, financing, and delivery of health
care. The need for these data will become even more critical in the years
to come, as the country debates and attempts to reach informed decisions
on major health care reform, an issue that will be on the forefront for the
next several years in the federal government, the professional community,
and the public.
Representative terms from entire chapter:
drug abuse
