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OCR for page 156
Monitoring Changes in Health Care
for Children and Families
Paul Newacheck and Barbara Starfield
INTRODUCTION
In 1994, when the workshop on integrating federal statistics on children
was held, health care reform was a leading item on the agendas of the
Clinton administration and the Congress. Although federal legislative progress
in this area is now uncertain, the concern of many stakeholders over access,
costs, and quality of the health care system is driving change at the state
level. Indeed, several states have already moved to implement health care
reforms. In addition, powerful economic forces are leading to rapid changes
in the organization and delivery of health care. For example, the move
throughout the country to managed health care in the private sector is one
indication of the kind of reform that may gather strength, with or without
federal legislation. These changes and others in the health care system are
the result of several factors.
Paul Newacheck is at the Institute for-Health Policy Studies, University of California at San
Francisco. Barbara Starfield is at the Department of Health Policy and Management, Johns
Hopkins University.
This paper was drafted and presented in 1994, when proposals for health care reform were
being put forward and debated by the Clinton administration and in Congress. The authors
have revised the text somewhat to reflect changing circumstances. However, the implications
for federal statistics on children of eventual changes in the nation's health care system remain
significant.
156
OCR for page 157
MONITORING CHANGES IN HEALTH CARE
157
First, the high and rapidly growing costs of the health care system have
generated concerns about the tax burdens of public programs such as Med-
icaid and Medicare, threats to the competitiveness of industry as a result of
the high costs of employee health benefits, high administrative costs associ-
ated with a disorganized mechanism of paying for services through uncoor-
dinated insurance policies, and perverse incentives for the use of unneces-
sary technology.
Second, access to basic health care services remains problematic for
millions of people as a result of poorly distributed personnel and facilities,
lack of insurance and inadequate insurance coverage for a substantial pro-
portion of the population (especially children and young adults), cost shar-
ing that imposes a barrier to seeking needed health services, employment
insecurity and the lack of portability of insurance coverage with changes in
place of employment, and the refusal of many health care providers to
deliver services to individuals covered by public programs such as Medic-
aid.
Third, there is continuing concern about the availability, quality, and
effectiveness of care as reflected by the relatively poor performance of the
United States on major health indicators (especially among the young) and
evidence of lack of effectiveness of many health services interventions.
Fourth, persistent and perhaps growing inequities among subgroups of
the population have resulted from systematic differences in access to care
and quality of care, insurance mechanisms such as experience rating, in
which the sickest and most disadvantaged are less able to obtain insurance,
and a premium structure for health insurance that requires the least well off
to pay as much as the wealthiest for their health insurance coverage.
Health care reforms are likely to bring about profound changes in the
manner in which children and their families in this country obtain health
care. Universal coverage would give almost 10 million children who are
now uninsured health insurance coverage (Snider and Boyce, 1994~. Mil-
lions more would be likely to see improvements in the breadth and depth of
their coverage. Others would see their coverage become more restrictive or
their choice of providers become more limited.
Under managed competition, the approach favored by the president and
many in Congress, there would be an acceleration of the already rapid
growth of managed care arrangements, such as health maintenance organi-
zations and preferred provider organizations. Managed care offers impor-
tant potential for reducing costs and improving access to quality care. Yet
many urge caution regarding the rapid adoption of managed care because of
the financial incentives to underserve patients in prepaid systems of care
(Newacheck et al., 1994; Fox and McManus, 1992J.
Although little research has been conducted to date on the effects of
managed care on children, it is clear that customary doctor-patient relation
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158
INTEGRATING FEDERAL STATISTICS ON CHILDREN
ships will be disrupted for many families as they enter organized systems of
care. Proponents of managed care argue that access to primary care will be
facilitated; however, it is not clear that this would be the case. Access to
specialist services would almost certainly be reduced in managed care set-
tings. Pediatricians would increasingly be asked to serve as gatekeepers for
the service system; at the same time they would experience reduced au-
tonomy in choosing courses of treatment for their patients.
Beyond these direct effects on pediatric patients and providers, health
care reforms carry significant indirect ramifications for families. For ex-
ample, some families would see their out-of-pocket expenses for medical
care decline, freeing resources for other family needs. Other families would
experience increased outlays for medical care. Changes occurring under
health care reform would also reverberate in the labor market. Most health
care reform proposals would end the practice of imposing preexisting con-
dition clauses in insurance policies. These restrictive clauses, common in
health insurance plans offered through small employers, can circumscribe
job mobility for families with disabled children. The effect of eliminating
this practice would be profound, since 4 million American children now
suffer from disabling chronic conditions (Benson and Marano, 1994~.
It is less clear how the myriad special programs serving vulnerable
populations of children would be affected by health care reform. The fed-
eral government now helps to fund a network of over 500 community and
migrant health centers across the United States. Low-income families and
their children often seek care in these and other publicly sponsored health
centers and clinics. In addition, the federal government currently spends
upward of $500 million annually on maternal and child health block grants.
The states supplement these grants with their own funds to operate a variety
of programs serving low-income and other children with special needs. Federal,
state, and local governments also support emergency medical services for
children, regionalized systems of prenatal care, regional centers serving
children with rare chronic diseases, family planning programs, and other
services. The fate of these programs and others that make up the public
health system remains uncertain.
Monitoring and evaluating the changes that accompany health care re-
forms for children, their families, and the health care system that serves
them presents a formidable challenge. Fortunately, the United States pos-
sesses a system for collecting and disseminating health statistics that is the
envy of most other developed countries. Even so, our health statistics
programs were not designed for the purpose of monitoring and evaluating
health care reform. Consequently, an assessment of their utility for this
purpose IS in order.
In doing so, it is important to keep in mind that changes in the health
care system will not affect all populations in the same manner. Children's
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MONITORING CHANGES IN HEALTH CARE
159
health needs and provider networks differ from those of adults. Children's
illnesses and injuries are diagnosed and treated in the context of rapid growth
and developmental processes that have no counterpart in adults. Their physi-
ological, cognitive, and emotional maturation makes children uniquely vul-
nerable to certain illnesses. Their developmental vulnerabilities require
heightened attention to preventive care and early diagnosis and treatment of
their disorders (Jameson and Wehr, 1993~. Assessment of the current fed-
eral health statistics programs and the design of mechanisms for monitoring
the effects of changes in the system must take into account these differ
ences.
In the next section, a framework is presented for assessing the types of
data needed for monitoring the effects of health care reforms on children
and families.
DATA NEEDED FOR MONITORING CHANGES IN
HEALTH CARE
Evaluation of the changing health care system requires data that sys-
tematically address concerns about equity, access, quality, and costs of care.
Timely and reliable data are needed to support the administration and op-
erations of the health care system, to measure the performance of providers,
ensure quality, and support public health objectives and programs (Gaus et
al., 1993).
Table 1 provides a framework for considering the data elements that are
required, over time, and at the different levels at which health policies and
planning are generated. The table also indicates the types of data sources
required to obtain the needed information. Examples of the types of data
needed for monitoring changes in health care for children, families, and the
health care system are presented below in narrative form.
· Information is needed to ascertain the state of health and functional
status of the population; the adequacy of access for preventive, curative,
palliative, and rehabilitative services; barriers to the receipt of care; the
equity of use of services across different population groups; and the degree
to which services are distributed where they are most needed. Information
concerning the burden of cost sharing and the degree to which it interferes
with the receipt of needed services; the extent to which the goals of conti-
nuity and coordination of care are achieved; and satisfaction of the popula-
tion with perceived technical, interpersonal, and organizational aspects of
health service are also needed. The indirect costs of illness, such as time
lost from work and school and child care costs attributable to illness, are
also important.
Information about the services provided is needed to ascertain the
.
OCR for page 160
160
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OCR for page 162
62
INTEGRATING FEDERAL STATISTICS ON CHILDREN
extent and type of health care needs being served; the distribution of ser-
vices; the extent to which practice patterns are targeted to the needs of the
population served; the extent to which they are organized to provide care
that is accessible, comprehensive, continuous, and coordinated; and the ex-
tent to which the services provided are justified by evidence of effective-
ness and appropriateness.
· Information about the organization and distribution of resources within
the health care system is needed in order to plan and monitor their adequacy
and equity with regard to preventive services, primary care services, and
consultative and referral services. Of importance are the deployment of
practitioners and facilities, the mode of financing and the distribution of
payments for services, the availability of primary care (for both physical
and mental child health problems) and specialty services for children with
chronic health problems, and the availability and deployment of special
modes of intervention such as home visiting, medications, and devices where
they are needed. Information concerning the costs of care provided and the
sources of payments for various aspects of care is required in order to
discern the degree of success in maintaining cost control within the health
services system. Information is also needed to determine the balance of
expenditures between primary care and specialty care as well as between
preventive care and care of illness.
· Information is also needed to track environmental and social charac-
teristics that predispose children and families to illness or interfere with
efforts to ameliorate illness.
Data collection strategies should be designed to provide baseline infor-
mation on all of these characteristics and should be organized to monitor
changes over time as health care reforms are implemented. Planning for
information retrieval should be coordinated so that data collected at local
levels can be aggregated to the regional, state, and federal level, and so that
data collected at higher levels can be related to data collected at lower
levels. This will permit comparisons to be made across health plans, geo-
graphic regions, and states and will enable health planners to identify more
successful models for delivery of care from ones that are less successful in
meeting the objectives of reform.
In the next section, the major existing sources of data are identified and
evaluated against the information needs (outlined above) for evaluating changes
in health care.
CHARACTERISTICS OF CURRENT DATA SOURCES
There are approximately 500 health, social, and demographic data projects
in the U.S. Department of Health and Human Services alone. Added to
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MONITORING CHANGES IN HEALTH CARE
163
these are state and local data collection efforts, projects of private groups,
and administrative and clinical databases of health facilities, plans, and
insurance agencies. Evaluation of health care reforms will require a change
in thinking about the locus of control for health data systems. Since both
governmental and private data sources are needed to address the variety of
characteristics in Table 1, a public-private partnership in developing the
framework and mechanisms for data collection and analysis is a critical
goal.
In this section, the major federal, state, and private data collection ef-
forts are presented and discussed with regard to their current contributions
to knowledge as well as changes that are required in order to make them
more suitable for evaluation of health care reforms.
Table 1 listed the types of data sources for obtaining information from
populations, providers and health care glans and health systems. Table 2
· ~· ~1 · , · _ _ ~
1 ,
provides brief descriptions of mayor databases relevant to monitoring changes
in health care. And it is organized according to these types of information
sources:
· Vital statistics and surveillance systems for obtaining population-
based information concerning health status.
· Population surveys to obtain data concerning health status, access to
services, use of services, experiences and satisfaction with various aspects
of services, and both direct and indirect out-of-pocket costs of dealing with
health problems.
· Provider surveys to obtain information on the characteristics of ser-
vices used, types of services provided, distribution of facilities, and types of
health conditions diagnosed.
· Administrative records from health plans and providers for providing
information on the adequacy of arrangements for assessing health care needs
of non~,l~tions served characteristics of care provided (including the bal
-- rare 7
ance between primary care and specialty care, as well as between preven-
tive, curative, palliative, and rehabilitative aspects of cared, the resources
expended in providing care, the adequacy of organizational arrangements
for achieving comprehensive, continuous, and coordinated care, documenta-
tion of effectiveness of care provided, and costs generated in the provision
of services.
.
Health systems data to determine the distribution of facilities and
personnel and their type, the sources of funding for the provision of ser-
vices, the distribution of expenditures by type and source of care, and total
expenditures for providing care to population groups differing in the extent
and type of their health care needs.
An additional category of data addresses documentation of environmen
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64
INTEGRATING FEDERAL STATISTICS ON CHILDREN
TABLE 2 Population-Based Data Sources for Monitoring Children's
Health Status
Name and Data Source/
Sponsor Methods
Selected Applications of Data
for Health Care Reform
A. Vital Statistics and Surveillance
Vital Statistics State vital
Cooperative registration
Program
(NCHS)
Linked Birth/
Infant Death
Program (NCHS)
Life expectancy; causes of death;
infant mortality; prenatal care
and birthweight; birth rates;
teenage and unmarried births;
family formation and dissolution;
pregnancy outcomes
Birth and death Infant mortality rates by birth cohort;
certificates infant mortality rates by birthweight
National Death Death certificates
Index (NCHS)
Facilitates epidemiologic follow-up
studies; verification of death for
individuals under study; most NCHS
surveys are linked to NDI
Youth Risk Self-administered Assessment of changes in health
Behavior questionnaire in practices over time
Surveillance schools
System (CDC)
B. Population Surveys
National Health Personal Large-scale data set with ability to
Interview Survey interviews establish trends in access, utilization,
(NCHS) and health status
National Health Personal Health status; chronic conditions;
Interview Survey interviews behavioral problems; learning and
on Child and developmental problems; birth
Family Health characteristics
(NCHS)
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MONITORING CHANGES IN HEALTH CARE
165
Child/Family Planned
Overall Sample Sample Periodicity
All births, deaths, All births, deaths, Annual
and fetal deaths; and fetal deaths;
sample of sample of
marriages and marriages and
divorces; divorces;
termination of termination of
pregnancy for pregnancy for
selected selected reporting
reporting areas areas
All U.S. births All U.S. births Annual
and infant deaths and infant deaths
All deaths All deaths Annual
occurring among
children
Nationally Only adolescents Every 2
representative surveyed; years
sample of students comparable but
in grades 9-12; unlinked survey
state-level data data for adults
available
50,000 households Approximately Annual;
30,000 children insurance and
under 18 years access surveys
plus family added in 1993
members
One child from
each NHIS
household
17,000 children
(in 1988) under
18 years plus
linked data on
other family
members
Every 7-8
years; planned
for 1996 if
funding
available
continued on next page
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166
TABLE 2 Continued
INTEGRATING FEDERAL STATISTICS ON CHILDREN
Name and Data Source/ Selected Applications of Data
Sponsor Methods for Health Care Reform
National Maternal Follow-back using, Factors associated with low birthweight
Infant Health state vital records; and infant death; barriers to prenatal
Survey (NCHS) interviews of care; effects of maternal risk factors
mothers; hospital on pregnancy outcomes
medical records;
prenatal care
providers
National Survey Personal Contraception and sterilization; teenage
of Family Growth interviews; sexual activity and pregnancy; family
(NCHS) telephone planning and unintended pregnancy;
interviews adoption; infertility
National Health Personal Physical health; clinical findings;
and Nutrition interviews; growth and development
Examination physical
Survey examinations;
laboratory tests
National Medical Multiple personal Linked data on access, utilization,
Expenditure interviews; health status, and expenditures
Survey provider record
(AHCPR) checks; insurance
policies analysis
National Personal interviews Longitudinal tracking of health status
Longitudinal
Survey of Youth
Child Data (DOL
and NICHD)
Early Childhood Personal interviews Longitudinal tracking off access,
Longitudinal with parents and utilization, and health status
Survey children; school
(NCES) questionnaire;
teacher
questionnaire
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MONITORING CHANGES IN HEALTH CARE
181
ever, existing databases (with the exception of systems surveillance data)
are designed for the most part to provide information at the level of the
individual patient or consumer. They are generally less suitable in their
current form for assessing outcomes aggregated at the level of families,
communities, and systems of care. Additional efforts will be required to
assess outcomes at these aggregate levels. For example, there is a need for
family-level identifiers in all household-based health surveys. In some
surveys, such as the National Health Interview Survey, it is currently very
difficult to identify records for parents of sample children, making family-
level analysis all but impossible. Other surveys, such as the Current Popu-
lation Survey, include family-level records and identifiers. Yet even in this
dataset, it can be difficult to identify relationships among family members,
especially in multigenerational households.
Much more work is required to assess effects at the community level.
As a starting point, geographic identifiers are needed in national surveys to
link systems surveillance data, such as that available in the Area Resource
File, to population data. In the past, strict interpretation of confidentiality
provisions have precluded such linkages. Although confidentiality must be
respected, a review of policy in this area is called for.
Timeliness
In gauging the impact of health care reforms, policy makers, research-
ers, advocacy groups, and others will require timely information. Speedy
acquisition, processing, and release of data are also essential if the monitor-
ing system is to provide an early warning of problems or unintended conse-
quences of reform. Hence, the implementation of reforms will increase
pressure on sponsoring agencies to speed the collection, processing, and
release of data. The pressure will be greatest for the larger, more complex
survey efforts, such as the National Medical Expenditure Survey. This
survey involves multiple personal interviews, diaries, and verification of
expenditures through record checks. Partly as a consequence of the enor-
mity of this undertaking, the 1977 and 1987 editions of this survey were
largely outdated by the time processing was completed and data were re-
leased.
Trade-offs are always present between precision of data and production
time. These competing needs must, of course, be balanced. One approach
to addressing this issue is to develop a monitoring system that combines
quick turnaround descriptive data for surveillance purposes with more pre-
cise but necessarily more slowly produced data for analytic and evaluative
purposes. Taking this approach, data from large-scale population and pro-
vider surveys would be used for in-depth analysis and evaluation of health
care reform. A complementary tracking system, based on rapid turnaround
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82
INTEGRATING FEDERAL STATISTICS ON CHILDREN
data sources, would be created to provide an early warning of problems and
unintended consequences. The tracking system should be designed to pro-
vide rapid release information on a continuous basis as reform is imple-
mented. Information for the tracking system could be derived from a com-
bination of administrative data, public health surveillance data, and telephone
survey data. Administrative data would be derived from health plans, claims
payment systems and other sources. Public health surveillance data would
come from existing and new surveillance efforts organized by the Centers
for Disease Control and Prevention, as well as state and local public health
agencies. Telephone surveys would provide immediate data on access bar-
riers, satisfaction with care, and other indicators not available from admin-
istrative and public health surveillance systems. A capacity to conduct
rapid turnaround telephone surveys is now being developed at the National
Center for Health Statistics (NCHS, 1993~. However, new funding would
be required to implement such a program.
Meeting Descriptive and Analytical Needs
It is necessary for the monitoring system to provide information for
both descriptive and analytical purposes. The objective of descriptive stud-
ies is to describe a phenomenon of interest, whereas the purpose of an
analytical study is to explain the phenomenon (Aday, 1989; Moore, 1993J.
Descriptive data are needed to profile the status of children, families, and
communities as well as providers and systems of care under health care
reforms. Data are also needed for analytical purposes, such as unraveling
relationships among variables or explaining trends. For example, the fed-
eral and state maternal and child health agencies may be interested in as-
sessing whether and how patterns of care change for chronically ill children
after health care reform is implemented. A descriptive profile of utilization
patterns could be created from population and provider surveys and admin-
istrative records. If chronically ill children's utilization patterns were found
to change substantially after implementation of reform, there would be a
clear need to move beyond description of the changes to an explanation of
whether the changes were caused by reforms or other factors, and which
specific factors were responsible for them.
Data for both descriptive and analytical purposes are essential, but da-
tabases must be designed carefully if they are to meet both needs. Typi-
cally, more depth is needed within a topic area for analytical studies, whereas
descriptive studies are often facilitated by fewer, carefully chosen mea-
sures. Hence, trade-offs can exist in meeting descriptive and analytical
needs. One of the objectives in designing a monitoring system is balancing
these needs.
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MONITORING CHANGES IN HEALTH CARE
Capacity to Assess Change
183
Assessment of change is fundamental to monitoring the impact of health
care reform. Ideally, a monitoring system should have the capacity to
provide information on changes occurring for children, families, and com-
munities as well as providers and systems of care across multiple domains
(access, utilization, expenditures, health status, health resources, quality,
and effectiveness of care).
Two analytical approaches can be taken to measure change. First, data
collected on a periodic basis can be analyzed and compared over time. For
example, health insurance data from the Current Population Survey are fre-
quently compared over time to assess changes in the number and proportion
of uninsured persons. For such comparisons to be meaningful, at least
certain items in the questionnaire must remain constant, since even small
changes in questionnaire wording can have significant effects on survey
responses. An example of this problem can be seen in the 1981 and 1988
Child Health Supplements to the National Health Interview Survey. Both
supplements contained a checklist of child health conditions. Although the
wording for many condition entries remained the same, the wording for
others changed precluding comparisons of prevalence over time. Although
it is sometimes possible to estimate the impact of wording changes when
questionnaires are changed, doing so is difficult and requires special atten
tion.
The second approach consists of assessing changes over time within a
panel of subjects (e.g., children, families, practitioners). In this case, the
same subjects are followed with measures of interest collected at regular
intervals. Panels can be created from samples obtained from vital statistics
(e.g., birth records), administrative records (e.g., claims records ), or survey
samples. The panel approach is used most often in the survey context.
Although a powerful tool for assessing and analyzing change, panel
surveys have been used only occasionally in child health. The most well-
known panel surveys, including the Survey of Income and Program Partici-
pation and the National Longitudinal Survey of Youth, have limited health
content. The few examples in the child health field include the National
Survey of Family Growth and the National Maternal and Infant Health
Survey, both sponsored by the National Center for Health Statistics. With
the exception of these surveys, which have very specific purposes and lim-
ited target populations, there are no ongoing panel surveys of children's
health.
Two promising possibilities for panel surveys are now being planned
that could be of enormous value in monitoring health care reforms. First,
the National Center for Health Statistics is considering conducting a child
and family survey as part of the National Health Interview Survey. This
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184
INTEGRATING FEDERAL STATISTICS ON CHILDREN
comprehensive survey of child and family health would be modeled after
the very successful 1988 National Health Interview Survey on Child Health.
Like its predecessor, the new survey could collect in-depth information on
pregnancy and birth, injuries, impairments, acute and chronic conditions,
developmental and learning and behavioral problems, use of health ser-
vices, and participation in health programs such as the Supplemental Food
Program for Women, Infants, and Children, Medicaid, and Healthy Start.
In addition, the planned survey would include several indicators of family
functioning. If a panel or follow-up component was added, the survey
could be an extremely valuable tool for assessing the effects of health care
reforms on children and families. However, it is not clear at present whether
even the baseline for this important survey will be fielded. The costs of this
survey must be met externally by agencies interested in the survey results,
and so far only limited funding has been committed. Unless additional
funding becomes available soon, survey planning will be abandoned.
The second promising panel survey is the Survey of Program Dynam-
ics, now being fielded by the Bureau of the Census. This survey includes a
panel of 20,000 households first assembled in 1993 as part of the Survey of
Income and Program Participation. The households will be followed over a
10-year period, with household interviews conducted annually or more fre-
quently. As envisioned by its planners, the survey would focus on provid-
ing an information base for policy makers and researchers interested in
welfare reform and health care reform issues. Initial funding has been
provided by federal agencies interested in welfare reform, but so far no
funding has been provided for the health care reform component.
Capacity to Measure Short- and Long-Term Effects
Health care reforms are likely to bring about a myriad of changes in the
organization, financing, and delivery of care. Some of these changes will
begin occurring during implementation or shortly after reforms are imple-
mented; others will occur much later. For example, changes in access and
utilization of care could be expected to occur soon after implementation of
a reform. In contrast, changes in child health status, if they occur, are
likely to become apparent only years later. Hence, the monitoring system
must be capable of capturing changes occurring over the short and the long
term.
As reforms are implemented at the state level, there are likely to be
policy adjustments in eligibility, benefits, cost-sharing, and other compo-
nents especially during the early years of reform and perhaps on an ongoing
basis, if past experience with Medicaid and Medicare can serve as a guide.
Consequently, the "effects" of reform are likely to change over time, as
policy makers fine-tune various elements of the health care reform plan.
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The monitoring system should then be designed with recognition of the
temporal and ongoing nature of change. This means a monitoring system
based on a simple "before and after" design will provide only partial and
perhaps misleading conclusions concerning the effects of reform. Instead,
the monitoring system should be conceived as an ongoing activity with
continuous collection of outcome data.
Provision of Adequate Geographic Detail
Most major federal health data bases were originally designed to pro-
vide national or regional level estimates. State-level data will be critical in
evaluating health care reforms, since reform is likely to be implemented
differently in each state (and perhaps only in selected states). Indeed, as
we've said, even without national health care reform, states are already
beginning to implement their own reform agendas. Consequently, state-
level data represent a key component of the monitoring system. All states
maintain vital records and many maintain data collection systems for hospi-
tal discharge information. Claims payment systems are also maintained by
every state Medicaid agency, although not all lend themselves to analysis.
A few states have also developed household survey databases (Hawaii, Rhode
Island, Puerto Rico), and all states participate in the behavioral risk factor
surveys sponsored by the Centers for Disease Control and Prevention. However,
no state currently has a data system in place that is capable of assessing the
broad range of effects shown in Table 1. Moreover, none of the major
federal health surveys currently has the capacity to assess the effects of
state-level reform efforts on children and families.
Two survey design considerations are particularly relevant to producing
state-level estimates from national surveys. First, the sample design, par-
ticularly the selection of primary sampling units, must be developed in a
manner that is consistent with state-level estimation. In the past, major
health surveys, such as the National Health Interview Survey, have selected
primary sampling units that overlap state boundaries or have excluded some
states entirely. This is now changing at least in some surveys. For ex-
ample, the 1995 redesign of the National Health Interview Survey will in-
clude only primary sampling units that do not cross state boundaries, and all
states will be represented for the first time. Second, there must be a suffi-
cient number of cases at the state level to permit accurate estimation. Even
in large household surveys, such as the National Health Interview Survey,
there are insufficient numbers of observations in all but the largest states to
permit useful state-level estimates. To a degree, this problem can be cir-
cumvented by combining multiple years of survey data. However, this
strategy will have limited applicability to small states. Other approaches,
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INTEGRATING FEDERAL STATISTICS ON CHILDREN
such as supplementing household interviews with telephone interviews, need
to be considered.
Over the long term, federal efforts should also be directed toward im-
proving capacity at the state and local levels to conduct surveys, make
better use of claims data and other administrative databases, and develop
standards and conventions for sharing data between levels of government.
The National Center for Health Statistics, with its long history of cooperat-
ing with states on the development of uniform standards for vital statistics,
may be well suited to leading this effort.
With health care reforms in place, there will be a much greater need for
coordinated information at the local, state, and national levels. As indicated
earlier, data collection and retrieval need to be coordinated so that data
collected at the local level can be aggregated to the state and federal level,
and so that data collected at higher levels can be related to data collected at
local levels. Doing so will permit comparison of effects across communi-
ties, states, and the nation.
Capacity to Assess Outcomes for Vulnerable Populations
The monitoring system should have a built-in capacity for assessing
outcomes for vulnerable child populations, including children living in poor
and near-poor families, minority children, children in out-of-home place-
ments, and children with disabilities and other ongoing health problems.
These vulnerable populations are likely to be affected more signifi-
cantly by health care reform than other populations. Consequently, there is
a heightened need to closely monitor their welfare as reforms are imple-
mented. Yet it is difficult to identify these children in vital records, admin-
istrative records, and public health surveillance systems. In surveys, sample
sizes for these populations are often too limited for meaningful analysis. In
the past, sample size problems have plagued analysis of health survey data
for minority populations. During recent years, survey designers have im-
proved capabilities in this area through oversampling of minority popula-
tions. For example, the National Health Interview Survey currently oversamples
blacks and will begin oversampling Hispanics in 1995. However, difficul-
ties remain in analyzing other vulnerable populations.
Two populations of particular concern are children residing in institu-
tional settings and homeless children. Virtually all ongoing health surveys
exclude children residing in institutions. Even the 1990 decennial census
data on the institutionalized population lacks the specificity needed to esti-
mate the number of children residing in institutions for health-related rea-
sons. Even less information is available on homeless children and families.
This population is routinely excluded from national household surveys and
other data systems, even though local surveys have demonstrated significant
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MONITORING CHANGES IN HEALTH CARE
187
unmet health needs exist for homeless children and families (Wood et al.
1 990a, 1 990b).
Emerging Issues
It is not possible to accurately predict the direction or timing of health
care reform, or its effects, especially unintended consequences. As a result,
flexibility in data collection will be necessary. During recent years, many
ongoing surveys have adopted a modularized approach, whereby a core
questionnaire is supplemented with modular questionnaires on topics of
current interest. This provides an effective means for maintaining flexibil-
ity in data collection.
Unfortunately, the fielding of a "supplement" often depends on the
availability of special funding for it. As a result, supplements generally
reflect the interests of specific groups that have the resources to offer. For
this reason, children have only infrequently been the subject of these added
modules. To adequately monitor the effects of health care reform on chil-
dren and families, an in-depth child and family supplement should be con-
ducted at least every five years and preferably every three years as part of
the National Health Interview Survey. Doing so would provide the flexibil-
ity needed to address emerging issues for children and families.
Integrating Data Collection Efforts
()ver time, federal databases have become increasingly specialized and
categorical in nature. The result is that few databases contain data across
the multiple domains relevant to health care reform (access, utilization,
expenditures, health status, health resources, effectiveness, and quality of
care). Consequently, the monitoring system will be required to draw on
multiple data sources. Its capacity for assessing the effects of reforms will
be enhanced to the extent that data from the different databases can be
integrated. Integrating or linking data from various sources offers the added
advantage of increasing the utility of existing data bases at a relatively
modest cost (AHCPR, 1991~.
Integrating data can occur at several levels. At the most basic level,
databases should share common definitions and terminology whenever pos-
sible; unfortunately, this happens less frequently than is desirable. For
example, the National Health Interview Survey, the National Medical Ex-
penditure Survey, the Current Population Survey, and the Survey of Income
and Program Participation use different questions for assessing health insur-
ance coverage. This makes it very difficult to compare results across sur-
veys, or even to develop agreed-on estimates of the size of the insured and
uninsured populations. Even commonly used terms such as access have
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INTEGRATING FEDERAL STATISTICS ON CHILDREN
imprecise meanings and varying representation in data collection efforts.
The National Committee on Vital and Health Statistics should perhaps be
given the responsibility for coordinating efforts to define important terms
so that they can be measured in consistent ways.
Linking data across databases can yield significant benefits but presents
additional challenges. Recently, much attention has been focused on link-
ing administrative records such as claims payment data to national survey
data. For example, data on utilization and expenditures from Medicare
administrative files are linked to population-based survey data in the Medi-
care Current Beneficiary Survey. Similarly, the National Death Index now
permits linkage of death certificates to most of the population surveys spon-
sored by the National Center for Health Statistics. The challenge ahead lies
in integrating databases across federal agencies as well as between public
and private data collection organizations.
Linkages of administrative data with survey data could provide a pow-
erful mechanism to explore the relationship between services provided and
resulting health status in the geographic area served by health services orga-
nizations and plans. Accomplishing this level of integration requires close
cooperation among the sponsors of the databases. This has not always been
possible in the past because of confidentiality issues, as well as concerns
such as funding and turf. Health care reform will mean that new efforts
toward integrating databases will be essential.
CONCLUSION
A carefully designed data collection and analysis strategy is central to
assessing the impact of the changing health care system on children and
families. In previous sections of this paper we presented a framework for
assessing data needs, reviewed existing databases, and articulated the at-
tributes of an effective monitoring system. All of this needs to be consid-
ered within an overall strategy for monitoring health care reforms. Too
often data collection and analysis efforts are divorced, resulting in missed
opportunities and inefficient use of resources. Data collection strategies
must be developed in conjunction with a data analysis strategy. The data
collection and analysis strategy should be driven by a clear understanding
of the key health care reform issues. The specifics of that strategy and the
monitoring system that will support it should be developed using a process
that takes into account the needs and views of policy makers, the scientific
community, child health advocates, and others concerned with the well-
being of children.
The strategy of planning for data to monitor and assess changes in
health care faces four types of challenges:
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MONITORING CHANGES IN HEALTH CARE
189
· Concept development. As the country moves toward primary care
and toward outcome and functional status assessment, concerted attention
will be needed to clarify the meaning of these concepts, especially as they
relate to children, so that approaches to measurement can be developed.
· Standardized measurement. At present, the many different data sys-
tems and data sets use different criteria to measure the same concept. Im-
portant goals of health care reform, such as improving access and quality of
care, are currently being measured in many different and incompatible ways.
Once the concepts of access, quality, primary care, and health and func-
tional status are clarified, attention must be devoted to developing consis-
tent or at least compatible ways of measuring them.
· Personal identifiers with maintenance of confidentiality. Since per-
son-focused (rather than disease-focused) health care requires the tracking
of events over time and places for each individual in the population, a
method of assigning unique personal identifiers that maintains confidential-
ity will need to be developed and instituted.
· Responsibility and accountability. Timely and accurate information is
needed to ensure that changes consequent to health care reforms proceed in
the anticipated direction.
In an ideal world, a system for monitoring health care reforms would be
designed and implemented without regard to budget constraints. Realisti-
cally, limited additional funds are likely to be available for the monitoring
system. Consequently, there is a need for careful consideration of the
marginal costs and marginal benefits of adding components to the monitor-
ing system. As much as possible, the system should rely on existing data
bases, modifying them when necessary but keeping in mind their original
purposes. Fortunately, the nation already possesses a rich set of health
databases that can be used for monitoring health care reforms. With careful
planning and coordination, the vast number of current surveys might even
be reduced, thus releasing resources that could better be applied to obtain-
ing data of better quality with more rapid availability. Such planning will
be required to develop a system capable of accurately and economically
assessing the effects of health care reform in a timely fashion.
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Representative terms from entire chapter:
health status
