HHS Research Initiative Regarding Transformations in Health and Human Services: Report of the Working Group

Publication Date

Jul 23, 1996

Executive Summary

Governments at all levels are realigning their health-services and human-services programs to keep pace with changing social and fiscal goals. Government initiatives with respect to the organization, financing, and availability of health services are adding impetus to changes that already are far advanced within the health-care industry. The opposite is true for the human-services arena, where government-led reforms are the principal driving force -- especially the incremental devolution of policy-making responsibilities from the federal government to state and local governments.

In December, 1995, Secretary Shalala of the Department of Health and Human Services (DHHS) charged a working group with Department-wide representation to develop a research strategy to understand these transformations. This report is the working group's response. It presents a proposed strategic framework for research on transformations in health and human services; highlights the principal themes associated with ongoing and potential transformations; summarizes major activities, underway or planned within the Department and elsewhere, that are relevant to creating the requisite knowledge base; identifies needs with respect to data, performance measures, program evaluations, and research; describes opportunities for further leadership by DHHS and others; and offers recommendations for action by DHHS agencies and offices.

The working group determined that, of all the requirements associated with monitoring and assessing transformations in relation to the well-being of Americans in general and vulnerable populations in particular, data resources are the most urgent. More and better data relevant to these issues is a stated need of virtually every DHHS agency and office.

The working group also determined that the magnitude of these data needs is substantial. Current data collections at the national level fall well short of what policy makers should have for effective decision-making; and the rapidly changing scene in health and human services is making these data collections progressively less effective in capturing the reality they are meant to measure. At the same time, in an ever-increasing number of instances, critically important information about health-care transactions under Medicare and Medicaid is becoming unavailable as capitated, managed-care arrangements with private-sector providers become more widespread. And the data systems of state and local governments are in the earliest stages of development, at best, with respect to fulfilling the new tasks presented by devolution of policy-making responsibilities related to health and human services.

The working group concluded that the Department must continue -- and, as funds and staffing levels allow, expand - - its front-line role in creating and sustaining relevant data resources at the national level. Moreover, the Department also must be part of the vanguard -- alongside other federal-government departments, state and local governments, and private-sector organizations -- for two other endeavors: (1) developing new data resources with sufficiently high resolution to support assessments for particular regions, states, communities, or populations and (2) developing better performance measures for health and human services to facilitate data-sharing across levels of government and between governments and private-sector organizations.

But data resources are not an end in themselves. Rather, to subserve policy-making effectively, they must be developed and maintained in the context of continuing efforts to assess the effectiveness of DHHS programs and to reset goals and strategies from time to time as necessary to address the ever-evolving requirements for health and human services.

The working group therefore identified a broad array of research topics that are highly relevant to understanding the transformations. Among the many topics that seem pertinent to the challenges facing policy-makers are the following lines of inquiry: (1) comparative assessments across states and communities with respect to the course and consequences of transformations; (2) studies of how changes in various service programs influence one another, especially their effectiveness in serving vulnerable populations that rely on several different services at the same time; and (3) analyses of the ways transformations might produce indirect effects upon the well-being of Americans -- e.g., through changes in community-based social-service organizations, public-health infrastructure at the state and local level, and academic health centers.

RECOMMENDATIONS

In the light of its findings with respect to needs and opportunities, the working group offers the following recommendations:

1. The HHS Data Council and its participating Agencies and Offices should continue their efforts toward ensuring a strong, broad-based capacity to monitor the well-being of Americans and the impacts of transformations in health/human services.

These efforts should include the following activities:

integrating major national surveys and other comparable data-collections, including assessments of quality- assurance measures;
refining national data-collection strategies to keep pace with changing needs and opportunities;
undertaking new or expanded data-collections to address emerging priorities -- e.g., needs identified through the performance-partnership process;
ensuring that resources devoted to such efforts are allocated to the highest-priority activities as determined by continuing appraisal of data systems in the light of changing needs and opportunities; and
participating in national collaborative efforts to develop data standards in areas relevant to health/human services and the well-being of Americans.

Strong, continuing collaboration with the Bureau of the Census, other government statistical agencies, foundations, and other private-sector organizations engaged in similar activities should be a hallmark of these efforts.

2. The Agencies and Offices of the Department should intensify their efforts to develop data resources sufficient to assess the course and consequences of transformations in health/human services at the level of individual states and communities and with respect to vulnerable populations.

These efforts should include the following activities:

use of national data-collection instruments on selected subnational samples;
follow-up data collections within the samples produced by national surveys -- especially longitudinal studies within selected geographic areas or focused on selected populations;
development of telephone surveys linked to household surveys in ways that enhance the quality, accuracy, and efficiency of data collection;
enhancement of Departmental and awardee administrative data bases in ways that make them more useful for research and evaluation;
collaboration with states and local governments in developing their capacities for collection, analysis, and sharing of data;
collaboration with foundations and other private-sector organizations engaged in collection and analysis of data at the state and/or community level; and
collaboration with health-services providers, insurance companies, and other organizations within the health- care industry with respect to collection, analysis, and sharing of data.

These efforts should be coordinated through the HHS Data Council.

3. The Secretary should ensure that the several efforts within the Department now examining performance measures in various contexts give coordinated attention to measures related to monitoring and assessing transformations in health/human services -- especially measures that the HHS Data Council and its collaborators might find useful for the development of national data standards.

4. The Agencies and Offices of the Department should ensure that their portfolios of program evaluations and research projects include initiatives that focus on transformations in health/human services -- especially as they relate to changes in the well-being of Americans. Agencies and Offices should sponsor research into the effects of devolution on the scope, characteristics, and efficacy of particular health/human services.

Agencies and Offices, when evaluating their service programs, should collaborate in addressing the interplay of health services and human services in those instances where beneficiaries rely significantly on both types and where changes in any particular service could affect materially the efficacy of others.

Agencies and Offices that fund extramural research should include the following types of projects in their programs:

- investigator-initiated social-science research relevant to ongoing or likely transformations; and

- projects that are likely to lead to improved methods for collecting, analyzing, and disseminating data related to transformations in health and human services.

Agencies and Offices should collaborate in sponsoring program evaluations and research related to transformations -- especially where their interests are closely related, where the scope of work extends beyond the mission of any one program, or where the requisite resources exceed those that any one program can commit.

5. The Office of the Secretary should ensure a coordinated Department-wide approach to monitoring and assessing transformations in health/human services.

The Assistant Secretary for Management and Budget should ensure that needs and opportunities for investments in relevant program evaluations, research projects, and data resources receive appropriate attention in the Departmental budget processes.

The Assistant Secretary for Management and Budget, in the course of coordinating DHHS-wide efforts under the Government Performance and Results Act, should ensure appropriate linkage between the development of performance measures and corresponding data-collection needs.

The Assistant Secretary for Planning and Evaluation should ensure that the Department-wide planning and evaluation processes foster cooperation -- both within the Department and with outside organizations -- with respect to monitoring and assessing transformations.

Introduction

In December, 1995, Secretary Shalala launched a Department-wide effort to develop a " research strategy to understand the major transformations that are taking place across the nation with respect to health and human services " (see Dec. 4, 1995 Memo - Attachment A). Following through on the Secretary's charge, the Assistant Secretary for Planning and Evaluation established a working group with broad representation from DHHS agencies and offices, as shown in Attachment B. This report presents the findings and recommendations of the working group.

At the time the working group began its deliberations, the Congress was considering a series of legislative proposals that, if enacted, would have produced abrupt, large-scale shifts of policy-making and fiscal responsibility from the federal government to state and local governments and the private sector. Two proposals had special significance for vulnerable populations served by the Department -- i.e., the proposals to convert Medicaid and Aid to Families with Dependent Children (AFDC) from entitlements to block grants.

Most of the major devolutionary proposals, including those focused on Medicaid and AFDC, are sufficiently controversial that they have not become law. But substantial changes in health services and human services are occurring nevertheless:

Managed-care arrangements of ever-increasing variety are proliferating within the health-care industry and are affecting virtually every health program funded by the Department.
Continuing a policy introduced early in this decade, the Health Care Financing Administration is granting waivers under Section 1115 of the Social Security Act allowing demonstrations of redesigned Medicaid programs in states that have submitted meritorious proposals to that end. Most feature managed-care arrangements.
In a similar vein, the Agency for Children and Families is granting Section 1115 waivers allowing demonstrations of redesigned AFDC programs in states that have submitted meritorious proposals toward that end. Welfare-to-work requirements are a feature in most of these demonstrations.
Governors, county executives, and mayors -- exercising authorities that traditionally have resided in states and local governments -- in recent years have mounted ever more ambitious efforts to contain the costs of health and human services and/or increase their effectiveness. Integration of services is a feature of many of these initiatives.

The preponderance of evidence suggests that these trends will continue through the foreseeable future and, if anything, both the diversity and pace of the changes will increase.

Desire for more cost/effective services is driving virtually all of these efforts to a significant degree; but they differ considerably among themselves in both scope and content. Health and human services for Americans thus are not being reshaped through a strategically unified, nationally coordinated campaign of wholesale reform. Rather, the current national picture is a dynamic mosaic constructed primarily from transformations that stem from particular governmental or private-sector initiatives and that, in general, are individualized, incremental, and asynchronous. Assessing the course and consequences of these transformations is the challenge to which the research initiatives described below are addressed.

Strategic Framework

Implicit in the Secretary's charge are four questions that span the spectrum of health and human services:

Which ongoing or prospective changes in the systems that provide health/human services are related or likely to be related to substantial changes in the well-being of the American people?
What is the nature of these ongoing or prospective changes in health/human services, and why are they occurring or likely to occur?
Which current programs and policies are fostering favorable changes and countering adverse ones?
Which changes are likely to be the most significant for the foreseeable future? for the long term?

To be judged successful, the Departmental research initiative must yield significant new knowledge relevant to these questions in forms that are useful to policy-makers, providers, purchasers, program sponsors, and clients and are available in time to help inform their decisions about both the transformations and their consequences.

Changes in Systems That Provide Health/Human Services

<------------>

Trends in Well-Being of American People

Figure 1: Changes in service programs and trends in well-being are linked reciprocally.

The scope of the charge to the working group is summarized in Figure 1. However, this summary sketch belies the rich diversity and extraordinary complexity of the issues associated with changes in health and human services and/or trends in well-being. No single research project realistically can be expected to address changes and trends across the board. Instead, most projects likely and appropriately will focus on specific issues that, while only a small part of the overall picture, nevertheless are of sufficient importance to warrant in-depth attention in their own right. However, to gain a broad understanding, some projects will have to cut across programs or functional boundaries and consider two or more systems simultaneously. Figure 2 presents some prominent examples.

Changes in Systems	<------------>	Trends in Well-Being

Services: e.g.,		Indicators: e.g.,
----------------		----------------
Income support		Income levels
Social services		Employment patterns
Child-development services		Health status: children
Health services		Health status: adults
Protection against environmental hazards		Family stability

Figure 2: Examples of (a) health and human services and (b) indicators of well-being.

Changes in Systems	<------------>	Trends in Well-Being

Types of Changes: e.g.,		Types of Data Aggregation: e.g.,
----------------		----------------
1. Locus of policy making		1. By indicators, e.g., immunization status homelessness
2. Scope and content of policies		1. By indicators, e.g., immunization status homelessness
3. Administrative organization		2. By geographic scales community state or region nation
4. Financing: resource levels		2. By geographic scales community state or region nation
5. Financing: mechanisms/ incentives		3. By special populations, e.g., poor children frail elderly chronically disabled
6. Service providers: numbers/ modalities
7. Efficacy of various modalities

Figure 3: Examples of (a) service system changes and (b) modes of data aggregation.

Further, research designs will need to be tailored carefully with respect to the types of transformations that are to be monitored and analyzed in relation to trends in well-being; and data on well-being, to be maximally useful, will need to be aggregable in many different ways. Figure 3 identifies some leading candidates for emphasis in each of the two categories. For example, policy changes in the areas of health-care financing and income support already are causing significant changes in the ways the corresponding services are organized and delivered. But effects on the well-being of Americans may not be fully apparent unless the data to be used for analysis first are aggregated in various ways -- e.g., by specific indicators of well-being such as immunization status or homelessness, for particular geographic scales ranging from the community level to the national level, or in terms of special populations such as disadvantaged children and disabled elderly individuals.

Changes in Systems	<------------>	Trends in Well-Being
----->	Human Behaviors	----->
/\	/\	/\
Federalism/ Public-Private Split	-->	/\
	/\
Social/ Economic Trends	-->	/\
	/\
Cultural Values	-->	/\
	/\
Science/ Technology	-->	/\
	/\
Environmental Hazards	--> <--	Environmental Hazards
	/\
Demographic Trends	--> <--	Demographic Trends

Figure 4: Service systems and well-being are affected by a variety of secular trends.

Finally, research designs must take into account the fact that the goals, structures, and operations of health/human services are interdependent in many ways with factors that shape the milieu in which these services are delivered. Interactions between system changes and trends in well-being may elude adequate explanation or, worse, be misinterpreted entirely if studies do not take cognizance of pertinent demographic, economic, social, and environmental trends. These relationships are depicted schematically in Figure 4. Some secular trends, especially demographic and economic ones, may be sufficiently prominent to mask or outweigh the effects of changes in health/human services.

These considerations suggest two complementary approaches to guide research on relationships between changes in services and trends in well-being. For cases where investigators are limited to retrospective analysis and interpretation of trends, the following five-part framework is applicable:

formulate an hypothesis or model regarding the relationship between one or more changes in health/human services and one or more measures of well-being;
characterize the most relevant changes and identify pertinent baseline information;
obtain information regarding trends in the well-being of the American people -- expressed in terms of the measure(s), population(s) and geographic scale(s) of interest;
obtain relevant information regarding demographic, economic, social, and environmental trends that -- in addition to affecting the goals, structure, or operations of systems for health/human services -- also may exert independent impacts on well-being; and
test the hypothesis or model by analyzing changes in health/human services in relation to trends in well-being - - taking into account demographic, economic, social, and environmental influences on both as applicable.

Whereas, for cases where the service transformation of interest is a controlled intervention, formal research-design principles, including the following, may be preferable:

formulate an hypothesis or model to be tested prospectively;
formulate a research plan, including the definition of "treatment" group(s) and control group and a process for assigning eligible individuals between/among them;
develop a plan for data analysis;
collect data in accord with the research plan; and
analyze and interpret the data, using the data-analysis plan as the starting point.

An array of studies that individually are consistent with one or the other of these approaches as appropriate and collectively span the myriad facets of health and human services would do much to enhance understanding of significant transformations that now are underway or seem sure to come.

Major Themes Related to the DHHS Mission

The Department must concern itself continually with the efficacy of systems that provide various types of health and/or human services to Americans. When these systems undergo changes that alter their effectiveness (either positively or negatively) in maintaining or improving the quality of life of their clients, the Department's progress toward its goals is similarly influenced.

Changes in the repertoire of health services over the long term are determined more than anything else by the interplay of scientific and technical advances on the one hand and demographic, economic, social, and environmental trends on the other. The rate at which new diagnostic capabilities, therapies, and interventions become assimilated into medicine generally determines the dimensions and pace of change with respect to what services are possible. But the likelihood that any given individual will be affected significantly by these developments is influenced heavily by the combination of his/her health status and personal financial circumstances as well as the national value system -- as manifest in the decisions of providers and policy-makers regarding which health services are available when, where, to whom, and under what circumstances.

In contrast, for welfare programs and other human services, changes in the national value system -- especially as distilled through the processes of representative government -- outweigh science and technology by a wide margin in determining the dimension and pace of policy change. Social-science research has contributed to the evolution primarily through analyzing shifts in cultural values as they occur and assessing their implications and thereby informing policy-makers about the effectiveness of different programs and policies in fulfilling national values.

The largest and most rapid changes in health/human services in recent years have involved the ways they are financed, organized, and made available. The course and consequences of these changes therefore warrant special attention by the Department for the foreseeable future. Further, that effort must embrace the multiple perspectives that arise from the different roles played by its agencies -- e.g., purchaser of health services, provider of supplemental income support and in-kind human services, monitor of the health status of the population, sponsor of myriad programs to improve the quality and/or accessibility of selected aspects of health/human services, and sponsor of basic and targeted research to expand the knowledge base within the pertinent medical, behavioral, and social sciences.

The well-being of vulnerable populations commands high priority from all these perspectives. The Department traditionally has been attentive to the needs of those who, for various reasons, do not have access to an adequate array of health and human services -- e.g., disadvantaged children; disadvantaged pregnant women; the frail elderly; Native Americans; racial and ethnic minorities; individuals with chronic, severe physical or mental disabilities; substance abusers; the unemployed; the uninsured; the homeless; migrant workers; and immigrants. As health-/human-services systems evolve, these populations almost invariably are among the first to experience adverse consequences and among the last to receive benefits. Continued emphasis on vulnerable populations therefore seems imperative as the Department seeks to monitor and assess not only the transformations in health/human services already underway but also the potentially more significant changes that are yet to come.

The remainder of this section discusses transformations involving health services and human services, respectively, and then addresses related issues involving data resources. The Appendices summarize an impressive array of ongoing and planned activities by DHHS agencies. Appendix 1 presents the summaries thematically; Appendix 2 presents them by agency/office.

Transformations in Financing, Organization, and Availability of Health Services

The principal force driving contemporary changes in health-services systems is the desire of purchasers to obtain greater value for their health-care expenditures while containing costs -- a reaction to the long-standing upward trend in health-care costs that far exceeds what the economy reasonably can accommodate for the long term. The quest to obtain more and better health-care per dollar has spawned a host of initiatives to slow, if not arrest or reverse, the growth in the costs of particular medical procedures, drugs, and other services; to establish tighter control over the range and volume of services that enrollees can receive; and, within the private sector, to set stricter eligibility criteria for health-insurance coverage and membership in prepaid health plans. The Department is active both in fostering the movement toward increased health-care economies and in assessing the impacts of the changes.

New Financing Modalities

Foremost among the contemporary changes is the rapid proliferation in the numbers and types of managed-care organizations, with the attendant transfer of financial risk from purchasers to providers. Corporations and other private-sector organizations that purchase health insurance for their employees increasingly are contracting with capitated plans. Several states have obtained waivers from the Department under Section 1115 of the Social Security Act to implement demonstrations that, as a central feature, enlist managed-care organizations to provide health services to Medicaid enrollees. An ever-growing number of individuals are opting for membership in health maintenance organizations or other managed-care plans in lieu of traditional insurance coverage for fee-for-service health care. And managed-care arrangements in connection with Medicare are growing, albeit more slowly than with Medicaid.

In the context of managed care, institutional purchasers are exploring a variety of specific approaches to cost containment. Examples are competitive bidding by providers, new risk-sharing and risk-adjustment models, and bundling of payments for high-cost, acute-care procedures. Also, new variants of managed care are appearing -- e.g., point-of-service networks, which give enrollees limited discretion to obtain services from providers outside the managed-care plan.

Nor is managed care the only arena for innovative financing. Bundling of payments is a prevalent trend for fee-for- service providers as well. Variations on the concepts of "preferred provider" and "participating provider" continue to emerge. Another emerging strategy is the establishment of financial incentives for fee-for-service providers whose billed costs fall below levels predicted from experience. These efforts build upon the now well-established practices of insurance companies and other institutional purchasers to establish fee schedules or dollar caps for commonly used services.

Increased Emphasis on Quality

Complementing the burgeoning new modalities for financing health care is heightened attention to quality. Purchasers in both the private and public sectors are increasing the scope and intensity of their efforts to determine the comparative effectiveness of alternative procedures and practice patterns, to promote wider adoption of those that work well, and to discourage use of those that yield unsatisfactory outcomes. Disorders characterized by high costs resulting from the need for episodic or chronic care are among the primary topics for this increased emphasis - - e.g., cardiovascular diseases, diabetes, behavioral disorders, severe physical disabilities, and end-stage renal disease.

The intensified focus on quality, in turn, has stimulated efforts to improve the methodology base. Individuals, institutional purchasers, and providers all have a stake in the search for new and improved performance measures for health-services systems -- outcome measures (e.g., percentage of low-birth-weight infants), process measures (e.g., percentage of pregnant women undergoing prenatal examination during the first trimester), and measures of beneficiary satisfaction. The array of current initiatives spans the spectrum from incremental refinement of long- accepted performance measures and quality indicators to definition of entirely new ones. In this arena, the Department actively supports research on quality measures and encourages national collaborative ventures such as the Health Plan Employer Data and Information Set (HEDIS) and activities of private-sector accrediting bodies such as the National Committee for Quality Assurance (NCQA), the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), the Foundation for Accountability (FACCT), and others.

Meeting the Challenge of Change

Programs of DHHS agencies not only are contributing to the current transformations in financing, organization, and availability of health services; they also are being affected by them, albeit in ways and to degrees that are not yet well understood in most instances. This presents significant challenges for policy-makers, who require accurate, up- to-date information relevant to a wide range of issues, such as those embodied in the following questions:

Has the nation's progress toward the goals expressed in "Healthy People 2000" been facilitated or retarded by the transformations to date? What are the prospects regarding the effects of further transformations?
Are the Department's programs of health care for vulnerable populations performing more or less effectively?
Is preventive health-care becoming more or less commonplace?
Are core public-health functions and the associated infrastructure ( e.g., child immunizations, disease screening, environmental health-services, and emergency-response capability) receiving more or fewer resources -- especially at the community level?
Are academic health-centers playing a more or less prominent role in clinical research? In graduate medical education? In providing health services to vulnerable populations?
Will the proliferation of managed-care arrangements along with other changes in health-care financing have a positive or negative influence upon the rate at which new pharmaceuticals, vaccines, and medical devices become available?

If these questions and related ones are to be answered in a timely fashion, the Department must support pertinent research, program evaluations, and associated data acquisitions. The activities summarized in Section A of Appendix 1 provide a strong substratum for the requisite inquiries.

Transformations in Financing, Organization, and Availability of Human Services

Human-services programs currently are undergoing rapid changes in scope, content, and accessibility; and, analogous to the health-care milieu, the changes primarily involve financing, organization, and availability of services. One major contributor to the ferment is bipartisan dissatisfaction among political leaders at all levels of government regarding the effectiveness of traditional welfare modalities. Another major contributor is the drive by governments to exert greater fiscal discipline on public spending overall -- often through strategic choices that feature slower growth or even major reductions in expenditures for human services.

Welfare Reform

Income-support programs have been at the forefront of these changes. Although operational details differ significantly from state to state -- and even among communities within the same state, two themes have become prominent across the nation: (1) facilitating the movement of welfare recipients into the workforce and (2) placing explicit limits on the duration of welfare benefits.

In this spirit, the majority of states have received waivers to demonstrate welfare programs characterized by policies and procedures tailored, at least in part, to the state's priorities and resource limitations. The Department has done much to effect this devolution of policy-making responsibility -- primarily by exercising the authority provided by Section 1115 of the Social Security Act to grant waivers for state-specific demonstrations involving either the Aid to Families with Dependent Children (AFDC) Program alone or AFDC in combination with Medicaid waivers (also granted by the Department as described above) and/or food-stamp program waivers (granted by the U.S. Department of Agriculture).

Other Human Services

Important as income-support mechanisms such as AFDC and Supplemental Security Income (administered by the Social Security Administration) are in their own right, they are only part of the panoply of human services. Prime examples of other areas in which the federal government provides significant leadership and resources are the Head Start Program (DHHS), the school-lunch program (U.S. Department of Agriculture), job training (Department of Labor), and housing assistance (Department of Housing and Urban Development). For older Americans, the Administration on Aging (DHHS) serves as an advocate at the level of the federal government and supports a wide variety of programs through a national network of State Units on Aging, Area Agencies on Aging, and service providers. Critically important complementary resources come from both states and local governments as well as from churches, charities, and other private-sector entities.

The ensemble of in-kind human services, like income-support programs, also is being affected by devolutionary forces. But, in this instance, the trend is toward enhancing the policy-making roles of communities -- both local governments and not-for-profit, community-based entities. The trend is fueled both by legislative initiatives such as the Family Preservation and Support Act and by policy initiatives such as the designation of Empowerment Zones and Enterprise Communities. The resulting new arrangements are enabling local-government officials and other community leaders to explore various approaches to integrating services with a view toward enhancing effectiveness while decreasing costs.

The linkage of health services and human services -- at least functionally, if not also organizationally or administratively -- is a noteworthy feature of an increasing number of these community-level efforts. Welfare-to- work policies can succeed only if they provide effective services for preparing and connecting welfare recipients to the workforce along with necessary child care. Homeless individuals often need mental-health services or substance-abuse treatment as well as meals and shelter. Many chronically infirm or severely disabled individuals can function well outside of nursing homes only if they have ready access to assistive technology, personal care, and assisted-living arrangements in addition to health services. And better coordination of core public-health functions with Head Start, public housing, food stamps, and other human services could make the aggregate more cost- effective than the sum of the parts operating independently.

Meeting the Challenge of Change

These changes engender many challenges for policy-makers, such as the following questions:

What are the most effective approaches for moving families from welfare to economic independence?
What are the effects of different welfare reforms on the well-being of children?
Does welfare reform have an effect on family structure, especially on the prevalence of out-of-wedlock childbearing and single-parent families?
What are the most effective approaches in improving the healthy development of low-income children?
How does devolution affect vulnerable populations, for example, children in foster care, at-risk youth, the disabled, and racial and ethnic minorities?
What are the basic trends in child well-being, including child health, child abuse, social and emotional development, and readiness for school?
What are the basic trends in well-being of elderly individuals, especially the frail elderly?
Will individuals with chronic, severe physical or mental disabilities or others requiring long-term care find an augmented or diminished array of services to help them live at home or in other community-based settings?
Will states and local governments exploit effectively the opportunities afforded by devolution -- e.g., to tailor and integrate health/human services to meet the most pressing needs within their jurisdictions?
How will the consequences of devolution affect public confidence in governments at all levels?

These and related questions, like the questions highlighted in the earlier discussion of health services, make clear the need for strong, sustained efforts in research, program evaluation, and data acquisition. Section B of Appendix 1 summarizes ongoing and planned activities across the Department that offer invaluable starting points for an expanded set of studies.

Data Resources Related to Understanding Transformations in Health/Human Services

The Department is one of the leaders in the federal government with respect to sponsoring national data collections related to health services, human services, and the well-being of Americans. For example, the National Vital Statistics System, the National Health Interview Survey, the Medicare Current Beneficiary Survey, and the Medical Expenditures Panel Survey all are uniquely important resources for policy-makers, analysts, and other scholars at all levels of government and elsewhere throughout the health community. Further, the Department cooperates actively with other Departments of the federal government in developing and applying major public-use data collections such as the Survey of Income and Program Participation, which is conducted by the Bureau of the Census.

The Department also amasses and maintains a wide variety of administrative data that, through appropriate analysis, can provide insights about services and impacts that otherwise might not be readily attainable. One example is the wealth of information associated with health-care transactions financed by Medicare and Medicaid. Other examples are administrative reports associated with categorical grants such as those supporting Community Health Centers or block grants such as those for Maternal and Child Health. Still other examples are the Multi-State Foster Care Data Archive and the National Child Abuse and Neglect Data System. Section 1C of the Appendix provides summary information on major data resources for which agencies of the Department play a leading role -- either as the primary sponsor or in collaboration with partners elsewhere in government and/or the private sector.

Needs, Opportunities, and Recommendations

The rapid introduction of varied new modalities for financing, organizing, and providing health/human services is affecting virtually every domain within the DHHS mission. Some of the transformations are exposing significant gaps in the information that DHHS officials and others need to make effective decisions. Some of the transformations are unprecedented, thereby seriously limiting the utility of the historical record for guiding policy choices and gauging performance. Some of the transformations are so far-reaching in their implications that social scientists cannot model them accurately on the basis of current knowledge and therefore cannot predict the outcomes with confidence. And the transformations in the aggregate are creating significant new demands for more and better data, performance measures, program evaluations, and research.

Data Resources

Needs at the National Level

If the Department is to have accurate and timely information of sufficient scope and detail to assess the transformations in health/human services, it must continue -- and, as resources allow, expand -- its front-line role in creating and sustaining relevant data resources at the national level. More and better data on the well-being of Americans in general and vulnerable populations in particular is a stated need of virtually every DHHS agency and office. Monitoring the well-being of Americans through the combination of the National Vital Statistics System and a set of recurring data collections centered on the National Health Interview Survey, the Survey of Income and Program Participation, and the Medical Expenditures Panel Survey is an important part of meeting this need.

However, current data collections do not address the human-services elements of the DHHS mission anywhere near as thoroughly as they might. To achieve a more nearly representative characterization of the well-being of Americans, the scope of the national monitoring effort must be enlarged to include data on attributes that complement health-status information -- e.g., household income and expenditures, employment history and prospects, and family structure. Although such monitoring is not -- and realistically cannot be -- the exclusive responsibility of the federal government, the Department and its fellow agencies are the only entities that can provide the requisite leadership, core resources, and year-to-year stability.

As complements to national population monitoring, longitudinal surveys of selected populations or within selected geographic areas are making invaluable contributions to understanding transformations. The Longitudinal Study on Aging, which includes follow ups on a subgroup selected from the National Health Interview Survey, is an excellent example. But, in view of current funding levels, the comparatively high costs of longitudinal studies make them prohibitively expensive in many cases, especially when the effort cannot be built upon an existing survey. Current funding constraints are forcing reexamination of essentially all ongoing and planned national data collections -- resulting, in some instances, in reduction or cessation of even well-established efforts -- at a time when the demand for information is intensifying substantially.

But, for virtually all national data collections, simply sustaining them is not likely to be enough for the long term. Their scope and constituent queries must be adjusted frequently lest the rapidly changing scene in health/human services make the data acquisition progressively less effective in capturing the reality it is intended to measure. Moreover, in some instances, considerable research will be necessary to ensure that the queries keep pace with the diversity and dynamics of the transformations.

Needs at the State and Local Levels and in Relation to the Private Sector

As important as national-level data are, they are insufficient by themselves to help policy-makers deal with the diversity of transformation initiatives that are underway or seem sure to come. The Department needs to be at the forefront -- along with other federal-government departments, state and local governments, and private-sector organizations -- in developing new data resources with sufficiently high resolution to support assessments for particular regions, states, communities, or populations.

Four areas warrant special attention. First, the Department and its collaborators could make more use of national data-collection instruments to obtain data on statistically significant subnational samples. Promising approaches include sampling strategies tailored to ensure adequate coverage of particular geographic areas or defined subpopulations, follow-up studies focused on particular subsets of households or individuals already covered by the national sampling, and use of telephone surveys as adjuncts to national surveys.

Second, the federal government almost certainly will become less and less able to obtain detailed information about either services or beneficiaries as states and local governments assume progressively larger shares of decision- making responsibilities related to health/human services. Devolution thus is putting a premium on new cooperative efforts with states and/or municipalities to help them enhance the capacity of their data systems related to health/human services and the well-being of their populations. Devolution also is putting a premium on

increased collaboration with foundations and other private-sector organizations with respect to their data-collection efforts regarding selected populations.

Third, although DHHS administrative records and those of its awardees are likely to be diminished in scope and detail, substantial data-collection efforts will remain. The residual data stream could be a potentially rich resource for meeting current and emerging information needs. For example, information about beneficiaries' transactions with health-services and human-services systems can be invaluable for assessing both status and trends in well- being.

But administrative records often fail to meet the quality-assurance standards required for research and evaluation. And even where data quality meets or surpasses this threshold for a particular use, the data often are not easily accessible or readily portable to other database management systems. DHHS programs and their awardees could fulfill important parts of the emerging requirements for new information about changes in health/human services by undertaking special efforts to make administrative records more useful for program evaluations and research. At the same time, program directors should guard against overburdening service providers with data-collection requirements that will affect response rates and data quality adversely.

Fourth, a similar challenge obtains in the arena of health-care financing, where managed-care organizations increasingly are providing capitated services and reporting only summary information at best in areas where the federal government formerly provided fee-for-service reimbursement and accumulated detailed transaction records. The Department needs to find new and better means to effect data-sharing arrangements with the health-care industry.

Opportunities

Enhancing the quality and scope of data resources already is a high-priority goal across the Department, as indicated by the Presidents's budget requests for Fiscal Years 1996 and 1997, by the establishment of the HHS Data Council, and by Section C of Appendix 1. Ongoing efforts to integrate the key national surveys should do much to facilitate studies of transformations in health/human services. Similar expectations obtain regarding the Council's efforts to forge better linkage between health-status indicators and other indicators of well-being, to achieve better coverage of vulnerable populations, and to foster creation of data sets with sufficiently high geographic resolution to enable assessments of transformations at the level of individual states and communities. The work of the HHS Data Council is an indispensable complement to evaluation projects and social-science research.

In a similar vein, foundations are increasing their support for efforts to track and assess transformations in selected aspects of health-services and human-services systems. The resulting array of surveys and other studies, which is expanding rapidly, promises to provide DHHS programs with access to information that they otherwise might not be able to obtain.

Throughout the health-care industry, providers and payers are accommodating to new forms of financing and new forms of organization while intensifying collaborative approaches to industry-wide issues such as performance measurement. These developments are presenting DHHS programs with new opportunities and venues to work with private-sector organizations not only in promoting better quality assurance, preventive health care, and support for the public-health infrastructure but also in fostering data sharing.

Recommendations

The HHS Data Council and its participating Agencies and Offices should continue their efforts toward ensuring a strong, broad-based capacity to monitor the well-being of Americans and the impacts of transformations in health/human services.

These efforts should include the following activities:

integrating major national surveys and other comparable data-collections, including assessments of quality- assurance measures;
refining national data-collection strategies to keep pace with changing needs and opportunities;
undertaking new or expanded data-collections to address emerging priorities -- e.g., needs identified through the performance-partnership process;
ensuring that resources devoted to such efforts are allocated to the highest-priority activities as determined by continuing appraisal of data systems in the light of changing needs and opportunities; and
participating in national collaborative efforts to develop data standards in areas relevant to health/human services and the well-being of Americans.

The Agencies and Offices of the Department should intensify their efforts to develop data resources sufficient to assess the course and consequences of transformations in health/human services at the level of individual states and communities and with respect to vulnerable populations.

These efforts should include the following activities:

use of national data-collection instruments on selected subnational samples;
follow-up data collections within the samples produced by national surveys -- especially longitudinal studies within selected geographic areas or focused on selected populations;
development of telephone surveys linked to household surveys in ways that enhance the quality, accuracy, and efficiency of data collection;
enhancement of Departmental and awardee administrative data bases in ways that make them more useful for research and evaluation;
collaboration with states and local governments in developing their capacities for collection, analysis, and sharing of data;
collaboration with foundations and other private-sector organizations engaged in collection and analysis of data at the state and/or community level; and
collaboration with health-services providers, insurance companies, and other organizations within the health- care industry with respect to collection, analysis, and sharing of data.

These efforts should be coordinated through the HHS Data Council.

Performance Measures

Needs in Relation to Assessing Transformations

The transformations also underscore the need for the Department to expand its leadership role in developing and applying better performance measures in connection with health services and human services. As incremental decentralization of policy-making proceeds, the strategies and operational details associated with service programs are becoming ever-more diverse. The resulting diversity cannot be captured readily with traditional process measures that presume procedural uniformity. Instead, diversity demands increased attention to results and the concomitant development of outcome measures that are unambiguous, quantifiable, and acceptable to all major stakeholders. A crucial component of the move toward outcome-based assessments of health/human services is the development of better indicators of the well-being of individuals, families, and communities.

Devolution already has added a new dimension to the need for better definitions and measures of performance. Achieving broad-based consensus around desired outcomes and milestones is likely to become an imperative in virtually every case where the federal government shares responsibility for a particular health service or human service with state governments, local governments, commercial health-care providers, or philanthropies. For example, a central goal of the Department's Performance Partnerships is to identify performance measures that, once accepted by all the stakeholders, will become management guideposts for the states as they assume functions previously performed by the federal government.

Consensus on performance measures -- both outcome measures and process measures -- also is likely to be a condition precedent for effective data-sharing across levels of government and between governments and private- sector organizations. When collaborating parties agree on what should be measured and why, development of measures governing the definitions, measurement conventions, and representations of the resulting data is facilitated considerably.

Opportunities

Section C of Appendix 1 highlights a variety of instances where DHHS agencies and offices are active participants in promoting the development and use of performance measures related to health/human services and the identification of indicators with which to characterize the well-being of Americans, especially members of vulnerable populations. Efforts to develop quality- assurance measures within the health-care industry, score-cards to help consumers rate the services they receive, and indicators of children's well-being illustrate the breadth of interest within the Department. Although the details differ considerably from one activity to another, they share a fundamental premise -- i.e., that service programs ought to be managed and evaluated primarily on the basis of outcomes rather than procedural compliance.

These activities also are likely to reinforce and be reinforced in turn by activities undertaken in response to the Government Performance and Results Act (GPRA). The Office of the Assistant Secretary for Management and Budget (OASMB), through the GPRA Roundtable, is coordinating DHHS-wide efforts to develop performance measures. Moreover, OASMB co-sponsors a government-wide Research Roundtable, which already has proposed a performance-measure model for scientific research programs. OASMB is working closely with programs throughout the Department as they strive to develop performance measures that are effective in characterizing the results of program operations and thereby are useful in guiding determinations of data needs and data- collection efforts.

Recommendation

The Secretary should ensure that the several efforts within the Department now examining performance measures in various contexts give coordinated attention to measures related to monitoring and assessing transformations in health/human services -- especially measures that the HHS Data Council and its collaborators might find useful for the development of national data standards.

Knowledge Base

Needs for New Knowledge to Support Policy-Making

As policy-making related to health and human services devolves from the federal government to states and municipalities and as the private sector comes to play a larger role, the Department and other stakeholders need to track the transformations closely. Comparing policies and monitoring policy changes all across the expanding network of decision loci will be crucial.

Examples of the many topics that warrant increased attention are the ways states and municipalities organize to perform their decision-making, the decisions that result, and the respective roles of public and private organizations in the delivery of health and human services. Case studies of particular policy initiatives at the community level could be invaluable if limited to the appropriate contexts. Perhaps most important in this area, policy-makers need comparative assessments across states and communities with respect to the impacts of particular transformations for which the goals are essentially identical but the approaches differ in fundamental ways -- e.g., Medicaid cost- containment and welfare-to-work initiatives.

Policy-makers also need better information about how different programs interact to influence access to services as well as the types, quality, and effectiveness of services people actually receive. Moreover, the opportunity is not limited to the interplay between or among DHHS programs; it also encompasses the interplay of DHHS programs with those of other government agencies at the national, state, and local levels and with activities of commercial and philanthropic organizations.

Of all the areas where a cross-modality perspective could do much to enhance current knowledge, none is more promising than programs serving vulnerable populations. Members of these groups typically are beneficiaries of more than one service program at any given time; and changes in any one modality can have a material influence on the effectiveness of the whole. Studies that fail to address all major program interactions in such instances are almost certain to yield inconclusive, if not misleading, results.

Finally, policy-makers need to assess whether changes in the goals or strategies for service programs exert indirect influences on the well-being of Americans and, if so, how. In particular, such changes already are affecting institutions such as health departments and welfare agencies within state and local governments as well as academic health centers and community-based social-service organizations. Some of these infrastructure changes could be of sufficient significance to warrant reinforcing or compensating actions by the Department. Further, if not accounted for adequately in studies, infrastructure changes could distort or mask important direct effects of health-services and human-services programs upon their target populations.

Opportunities

DHHS agencies and offices already are sponsoring a wide variety of evaluation projects that focus directly on changes in the financing, organization, and availability of health and/or human services. The evaluations associated with state-specific Medicaid and welfare-reform demonstrations, respectively, are leading examples. Other foci are the Head Start Program, job-training/placement efforts for welfare recipients, Community Health Centers, health care for Native Americans, mental-health services, and treatment programs for substance abusers.

DHHS evaluation projects provide an excellent base on which to build an expanded array of studies related to the role of the Department as both sponsor and provider of services. In particular, DHHS programs are well-positioned to mount a coordinated effort to examine the effects of devolution in general and selected programs and policies in particular on the well-being of children (especially low-income children) -- including their development, health, and ability to become productive members of society.

Further, the ferment within health-services and human-services systems is attracting interest among social scientists in universities, foundations, and other research-oriented institutions throughout the nation. Many of these scholars already have affiliations with state governments, local governments, and/or community-based organizations and thus may be able to describe and assess transformation initiatives that DHHS evaluation projects are not likely to encompass.

Many of these scholars also are motivated to conduct relevant basic research in social-science disciplines such as demography, ethnography, social psychology, and microeconomics. Such research is highly likely to yield new knowledge and better tools for assessing transformations and their effects -- e.g., new measures of well-being that are easy to use in data collection and readily incorporated into survey instruments. Appropriately tailored solicitations for grant and cooperative-agreement proposals, including modifications of current program announcements, would enable DHHS programs to tap more deeply than at present into the rich expertise and diverse perspectives within the social-science research community.

Recommendations

The Agencies and Offices of the Department should ensure that their portfolios of program evaluations and research projects include initiatives that focus on transformations in health/human services -- especially as they relate to changes in the well-being of Americans.

Agencies and Offices should sponsor research into the effects of devolution on the scope, characteristics, and efficacy of particular health/human services.

Agencies and Offices that fund extramural research should include the following types of projects in their programs:

investigator-initiated social-science research relevant to ongoing or likely transformations; and
projects that are likely to lead to improved methods for collecting, analyzing, and disseminating data related to transformations in health and human services.

The Office of the Secretary should ensure a coordinated Department-wide approach to monitoring and assessing transformations in health/human services.

Attachments

A. Secretary's Memorandum of December 4, 1995

TO: OPDIV/STAFFDIV Heads

FROM: The Secretary

SUBJECT: Next Steps on Research Initiative

Following our meeting of October 11, 1995, Peter Edelman consulted with you or members of your senior staff about how we should work together on a research strategy to understand the major transformations that are taking place across the nation with respect to health and human services -- including changes in many of the Department's programs. Based on those consultations, he has recommended an approach that will enable us to identify issues of common concern to involved parties, both public and private, and to define the Department's roles in relation to those issues -- especially our own priorities for investment and our opportunities for collaboration within the Department and with outside organizations.

The approach recommended is for a very fast-paced Department-wide effort that will identify the key research questions that need to be addressed, examine existing data bases, inventory the principal relevant work that is under way or contemplated, and report back to all of you and ultimately to me on recommended next steps. The first step in the process will be the convening of a senior staff-level working group to address these issues and report to all of you before the end of January 1996. Bill Raub, who recently joined ASPE as Senior Science Advisor, will convene the working group.

I ask you to identify an experienced senior staff person to serve on that group. The individual identified should be both aware of the critical policy questions that should be raised and conversant with the research and data activities that are germane to the effort. Bill will call you within the next few days to learn the name of the participant from your organization and to receive whatever preliminary guidance you may wish to offer regarding this task.

Thank you for your assistance. Helping all major stakeholders achieve solid understanding of the multi-faceted system of health and human services that will emerge in the wake of ongoing and prospective policy changes at both national and state levels is one of the most important goals the Department can pursue.

Donna E. Shalala

B. Roster of Working Group

Research Initiative Working Group

William F. Raub, Ph.D., Chairperson
Science Advisor
Office of Assistant Secretary for Planning and Evaluation (OASPE)

Alfred Duncker, Director
Office of Program Development
Administration on Aging (AOA)

Howard Rolston, Director
Office of Planning, Research and Evaluation
Administration for Children and Families (ACF)

Irene Fraser, Ph.D., Acting Director
Center for Organizations and Delivery Studies
Agency for Health Care Policy and Research (AHCPR)

Phyllis Zucker
Director of Planning and Evaluation
Agency for Health Care Policy and Research (AHCPR)

Ed Hunter, Chief
Planning, Budget and Legislation Staff
Center for Disease Control and Prevention (CDC)

Jeffrey R. Harris, M.D., MPH
Managed Care Coordinator
Center for Disease Control and Prevention (CDC)

Randolph Wykoff, M.D.
Associate Commissioner for Operations
Food and Drug Administration (FDA)

Nancy DeLew, Deputy Director
Office of Legislative and Intergovernmental Affairs
Health Care Financing Administration (HCFA)

Stephen Clauser, Ph.D., Director
Office of Beneficiary and Program Research and Demonstration
Health Care Financing Administration (HCFA)

Michael Millman, Ph.D., Research Coordinator
Office of Planning, Evaluation and Legislation
Health Resources and Services Administration (HRSA)

Leo J. Nolan, Acting Associate Director
Office of Planning, Evaluation and Legislation
Indian Health Service (IHS)

Lana Skirboll, Ph.D.
Associate Director for Science Policy
National Institutes of Health (NIH)

LaVarne Burton
Deputy Assistant Secretary for Budget Policy and Initiative
Office of Assistant Secretary for Management and Budget (OASMB)

Wm. Mark Krushat, M.P.H., Sc.D., Senior Advisor
Office of Evaluation and Inspections
Office of the Inspector General (OIG)

Jo Ivey Boufford, M.D.
Principal Deputy Assistant Secretary for Health
Office of Public Health and Science (OPHS)

Michele Applegate, Deputy Administrator
Substance Abuse and Mental Health Services Administration (SAMHSA)

STAFF TO THE WORKING GROUP

Lily O. Engstrom
Science Policy Analyst
Office of Assistant Secretary for Planning and Evaluation (OASPE)

Diane Jones, Secretary
Office of Science Policy
Office of Assistant Secretary for Planning and Evaluation (OASPE)

Shirley LaBella
President Management Intern
Department of Health and Human Services

Preya Sharma, Student Volunteer
Office of Science Policy
Office of Assistant Secretary for Planning and Evaluation (OASPE)

C. List of Acronyms

AAPCC

Adjusted Average Per Capita Cost

ACCESS

Access to Community Care and Effective Services

ACF

Administration for Children and Families

ACYF

Administration on Children, Youth and Families

ADSS

Alcohol Drug Services Survey

AFDC

Aid to Families with Dependent Children

AHCPR

Agency for Health Care Policy and Research

AI/AN

American Indians/Alaska Natives

BPHC

Bureau of Primary Health Care

BRFSS

Behavioral Risk Factor Surveillance System

(Warren Grant Magnuson) Clinical Center

CCDP

Comprehensive Child Development Program

CHC

Community Health Center

DASIS

Drug and Alcohol Services Information System

DCRT

Division of Computer Research and Technology

DOI

Department of the Interior

DRG

Division of Research Grants

EDI

Electronic Data Interchange

ESRD

End Stage Renal Disease

FIC

Fogarty International Center

GPRA

Government Performance and Results Act

HEDIS

Health Plan Employer Data and Information Set

HERS

HIV Epidemiology Research Study

IOM

Institute of Medicine

I/T/U

IHS/Tribal/Urban

JOBS

Job Opportunities and Basic Skills Training Program

LSOA

Longitudinal Survey on Aging

MACS

Multicenter AIDS Cohort Study

MCBS

Medicare Current Beneficiary Survey

MTS

Medicare Transaction System

NCHGR

National Center for Human Genome Research

NCHS

National Center for Health Statistics

NCI

National Cancer Institute

NCRR

National Center for Research Resources

NEHIS

National Employer Health Insurance Survey

NEI

National Eye Institute

NHANES

National Health and Nutrition Examination Survey

NHIS

National Health Interview Survey

NHLBI

National Heart, Lung, and Blood Institute

NIA

National Institute on Aging

NIAAA

National Institute on Alcohol Abuse and Alcoholism

NIAID

National Institute of Allergy and Infectious Diseases

NIAMS

National Institute of Arthritis and Musculoskeletal and Skin Diseases

NICHD

National Institute of Child Health and Human Development

NIDA

National Institute on Drug Abuse

NIDCD

National Institute on Deafness and Other Communication Disorders

NIDDK

National Institute of Diabetes and Digestive and Kidney Diseases

NIDR

National Institute of Dental Research

NIEHS

National Institute of Environmental Health Sciences

NIGMS

National Institute of General Medical Sciences

NIMH

National Institute of Mental Health

NINDS

National Institute of Neurological Disorders and Stroke

NINR

National Institute of Nursing Research

NIS

National Immunization Survey

NLM

National Library of Medicine

NNHS

National Nursing Home Survey

NSFH

National Survey of Families and Households

OIRM

Office of Information Resources Management

OOP

Object Oriented Programming

OPDIVs

Operating Divisions

PACE

Program for All-Inclusive Care for the Elderly

PDQ

Physician's Data Query

PRO

Professional Review Organizations

NIST

National Institute of Standards and Technology

RPMS

Resource and Patient Management System

RTCs

Regional Treatment Centers

SEER

Surveillance, Epidemiology, and End Results

SMRFs

State Medicaid Research Files

SROS

Services Research Outcomes Study

STAFFDIVs

Staff Divisions

WIHS

Women's Interagency HIV Study

WITS

Womens and Infants Transmission Study

Appendices

Appendix 1: Activities by Major Thematic Area

ACTIVITIES RELATED TO TRANSFORMATIONS IN FINANCING, ORGANIZATION, AND AVAILABILITY OF HEALTH SERVICES

ADMINISTRATION ON AGING

1. "REDEFINING RETIREMENT"

Through its leadership of this HHS-wide initiative, AoA is focusing on the demographic and other trends that the Department must address in formulating an array of coherent, mutually reinforcing policies and programs, particularly in terms of the baby boom generation's retirement in the 21st century.

2. NATIONAL ACADEMY ON AGING

The Academy serves as a national forum for policy analysis and debate on the major issues associated with aging. No appropriations for FY1996 cloud the future of the Academy.

3. NATIONAL RESOURCE AND POLICY CENTER

The Centers conduct policy-relevant studies in high-priority areas such as long-term care, nutrition, housing, and well-being of older women. No appropriations for FY1996 threaten the future of the Centers.

AGENCY FOR HEALTH CARE POLICY AND RESEARCH

1. CENTER FOR ORGANIZATION AND DELIVERY STUDIES

This newly formed unit conducts and sponsors research on changes in the organization and delivery of health care attendant to market forces and changes in public programs. The program includes analyses of the impact of these changes on cost, access, and quality.

2. STUDIES OF CHANGES IN SERVICES DELIVERY

Current and planned research focuses on four areas: factors affecting delivery systems and demand for health care, changes in health-care markets, changes in the structure and organization of delivery systems, and organizational behavior within these changing institutions.

Other current and planned research focuses on health insurance, access, cost, quality, and cost-effectiveness -- with emphasis on the impacts of managed care and linkage of particular health-service outcomes to changes in market structure, payment systems, and organizational structure. In collaboration with HRSA, AHCPR is sponsoring research on effects of short maternity stays.

3. OUTCOME MEASURES AND QUALITY IMPROVEMENT STRATEGIES

In collaboration with the Health Resources and Services Administration (HRSA), AHCPR is sponsoring research on the effect of physician speciality training on the costs and quality of primary care in health maintenance organizations.

AHCPR also is collaborating with the Health Care Financing Administration (HCFA) and others on evaluations of Medicaid managed care demonstrations.

AHCPR is collaborating with the Foundation for Accountability, the American Medical Association, and consortia of managed care organizations to develop approaches to measuring quality of care and consumer satisfaction with health care.

Included among AHCPR's collaborators are the Veterans Health Administration, the Foundation for Accountability, the HMO Group, Group Health Association of America, the American Medical Association, the Kellogg Foundation, the Robert Wood Johnson Foundation, and the Alzheimer's Foundation.

4. CONSUMER INFORMATION STRATEGIES

Through the User Liaison Program, AHCPR commissions studies of major policy and program changes affecting states. It also convenes experts for state-oriented workshops on managed care, integrated delivery systems, and mechanisms for integrating health-care data.

Projects supported through the Small Business Innovation Research Program focus on developing innovative computer software and other materials to help consumers (especially minorities, disabled persons, and persons with low reading skills) make informed choices about health care.

The Oregon Scorecard Project is designed to help consumers evaluate access and quality of care provided under the State-supported health-insurance program.

The Consumer Assessment of Health Plans Study (CAHPS) project will assess consumer preferences for information on health plans and how consumers use information.

CENTERS FOR DISEASE CONTROL AND PREVENTION

1. INTERACTIONS WITH STATE AND LOCAL HEALTH DEPARTMENTS

CDC works with state and local health departments across a range of issues, including evaluation. An example is work that NCHS has done with states regarding the effectiveness of Medicaid prenatal care; linkage of birth and infant-death records with Medicaid enrollment and claims records could be invaluable for monitoring this aspect of Medicaid coverage and outcomes at the state level. Another example is collaboration between CDC and Los Angeles County, where CDC is helping assess the impact of funding and organizational transformations in Los Angeles on the delivery of public health services and on the health of the population.

HEALTH CARE FINANCING ADMINISTRATION

1. MEDICAID MANAGED CARE DEMONSTRATIONS

Section 1115 of the Social Security Act authorizes HCFA to give states flexibility to test alternative approaches to managing Medicaid programs. Current initiatives include comprehensive state-wide health-care reform demonstrations in 13 states and several sub-state projects testing integrated systems for persons with disabilities, beneficiary-centered long-term care, and family-planning services. The evaluations focus on impacts on beneficiaries' access to services and the quality of care.

HCFA collaborates with the Substance Abuse and Mental Health Services Administration (SAMHSA) and the Office of the Assistant Secretary for Planning and Evaluation (OASPE) in evaluating Medicaid 1115 demonstrations, including the design of multi-state evaluations. Special foci of interest in these collaborations are the quality of care and access to health services for vulnerable populations -- e.g., beneficiaries with severe addictions, mental illness, or severe physical disabilities. Further, to the extent that welfare-reform demonstrations approved by the Administration for Children and Families (ACF) affect the same populations that are included in Medicaid 1115 demonstrations, HCFA and ACF will have increased opportunities for integrated assessment.

HCFA also has collaborated with the Robert Wood Johnson Foundation and the Pew Charitable Trust regarding development of several managed care projects under Medicaid 1115 demonstrations. Broader collaborations with private foundations with respect to quality issues associated with managed care would be desirable.

Evaluations of the state-based Medicaid 1115 demonstrations present formidable challenges. The states' proposals cover many different types of initiatives; and baseline data often are severely limited. Moreover, if legislative proposals such as those considered during the past year ultimately were enacted (e.g., transformation of Medicaid to block grants with elimination of entitlement), the changes almost certainly would supersede the ongoing demonstrations in most instances and force a comprehensive revision of the strategy for evaluating impacts of the states' initiatives.

2. MEDICARE MANAGED CARE DEMONSTRATIONS

The CHOICES project is designed to investigate alternate models of Medicare managed care plans and alternatives to current capitation methodology -- in particular, risk-sharing with HCFA and reinsurance. Participating plans will be expected to incorporate any risk-adjustment models (e.g., a health-status adjustment) as part of the payment method to be demonstrated. Quality indicators to support the study are being developed.

In a competitive-pricing demonstration, Health Maintenance Organizations (HMOs) within defined market areas are invited to bid for payment under a market-based system in lieu of receiving payment in accord with the Adjusted Average Per Capita Cost (AAPCC). The framework for evaluating this competitive-pricing demonstration is under development.

The End Stage Renal Disease (ESRD) Capitation Demonstration provides payment for dialysis at a single capitation rate rather than for each treatment session.

3. OTHER CHANGES IN HEALTH-CARE FINANCING

Recognizing that Medicare will continue to have a substantial fee-for-service component, HCFA fosters research and demonstrations to develop prospective payment methods for nursing homes and home health-care, to foster competitive bidding for laboratory services and durable medical equipment, to bundle payments for high-cost, acute-care procedures (the Centers of Excellence initiative), and to revise the practice expense component of the Medicare physician fee schedule.

Two other studies are related to increasing return on health-care expenditures. One project is attempting to develop a risk-adjustment payment system for disabled Medicaid beneficiaries. Another project addresses an alternative to managed care -- i.e., augmenting a fee-for-service payment system with a financial incentive if payments for patient care fall below levels predicted from experience.

HCFA is also sponsoring a multi-site Medicare demonstration designed to examine the cost-effectiveness of reimbursing telemedicine services in rural areas.

4. HEALTH CARE FOR VULNERABLE POPULATIONS

Several projects focus on individuals who are eligible for both Medicare and Medicaid (dual-eligibles) and are implemented in partnership with states. The objective is to integrate acute and long-term care services under one capitated financing arrangement. One such effort is the Social HMO Initiative, which is designed to expand managed care to ESRD beneficiaries and the frail elderly. Another is the Program for All-Inclusive Care for the Elderly (PACE), which features a specialized delivery system oriented to frail elderly who live in the community but are certifiable for nursing-home care. HCFA is collaborating on other dual-eligible projects in Minnesota, Oregon, Arizona, and Maine.

Other demonstrations focused on health-care for vulnerable populations are Evercare (institutionalized elderly), Community Nursing Organization (home health care and other specialized services), and the Medicaid- based demonstration centered on Washington D.C. Health Services for Children with Special Needs (children with disabilities).

Two demonstration projects focused on beneficiary-centered care feature the use of vouchers to give Medicare/Medicaid beneficiaries more control over acquisition of health services. One project involves vouchers for purchase of durable medical equipment for the physically handicapped. The other project, a collaboration with Rhode Island, is intended to develop a voucher system for purchase of home- and community-based services for Medicaid-eligible persons with developmental disabilities.

HCFA collaborates with the Department of Education on projects relating to services for disabled persons. In addition, HCFA is exploring potential demonstration projects with the Department of Defense (DoD) and the Department of Veterans Affairs to coordinate services for Medicare beneficiaries who also are eligible for services from those Departments. The DoD has proposed a demonstration project whereby the Medicare program would treat military health plans as risk-type HMOs for dual-eligible Medicare/DoD beneficiaries.

5. OUTCOME MEASURES AND QUALITY IMPROVEMENT STRATEGIES

National and local level quality improvement projects by the Professional Review Organizations (PRO) and ESRD Networks identify variations in practice patterns overall, determine the causes, and, where appropriate, work to decrease the variance while enhancing efficacy. Within these efforts, HCFA enlists the aid of AHCPR to identify clinical guidelines applicable to the patient populations of interest.

In related activities, HCFA collaborates with the National Institute of Diabetes and Digestive and Kidney Diseases in sponsoring economic studies by the United States Renal Data System; with the Administration on Developmental Disabilities National Recurring Data Set Project to monitor national and state trends in residential services for persons with developmental disabilities; and with the Bureau of the Census to supplement

Medicare claims data to investigate the impact of socio-economic variables on access to care.

HCFA is involved in several major collaborative efforts to improve quality and enhance outcomes. For example, its initiatives with respect to cardiovascular disease, diabetes, and end-stage renal disease each enlist the participation of numerous other government agencies and private-sector organizations. Moreover, its joint venture with the Midwestern Business Group to address escalating health-care costs potentially is a model for collaborations between PROs and business coalitions.

Efforts to promote the use of quality indicators for health services include a) the PRO and ESRD Network (see above) b) collaboration with the Health Plan Employer Data and Information Set (HEDIS) and c) efforts to develop quality indicators to guide certification and oversight of nursing homes and home health-care services. HCFA is collaborating with the National Library of Medicine to incorporate medical vocabulary standards into the work on quality indicators.

6. CONSUMER INFORMATION STRATEGIES

HCFA is developing and testing improved information resources that are intended to help consumers choose among health-care plans and providers based on their relative value and quality. The same information may also be shared with health-plan managers, health-care providers, and others to assist them in being more responsive to the preferences and needs of beneficiaries.

HCFA staff are examining the variation in use of preventive health services such as influenza vaccination, mammography, prostate-cancer screening, and associated medical/surgical interventions. HCFA will continue the consumer information initiative to encourage greater utilization of these preventive services. In addition, many quality-improvement projects undertaken by the Professional Review Organizations (PROs) focus on identifying variations in the use of preventive services and working with providers, physicians, and beneficiaries to make these services a more prominent component of health care.

HEALTH RESOURCES AND SERVICES ADMINISTRATION

1. STUDIES OF SYSTEMIC CHANGES

Annual reports of expenditures under the Maternal & Child Health block grants enable monitoring of spending patterns -- e.g., changes in distribution of funds among personal health services, enabling services, core public-health functions, and public-health infrastructure. Of particular interest is the potential shift between population-based public health and delivery of medical services due to pressures to serve growing numbers of uninsured.

Decision-making and collaboration among public and private entities at the community level are being studied through a variety of efforts. One project is tracking how Alameda California is transforming its county health care system. HRSA will be collaborating with the Hospital Research and Education Trust to evaluate its Community Care Network demonstration which seeks to implement collaborative partnerships.

Because the shift to managed care emphasizes the need for ambulatory and community based training, HRSA is exploring how graduate medical education dollars and other initiatives can stimulate an important change in the locus and content of health professions education. This is being accomplished through studies that determine costs of training in ambulatory sites and through collaborative efforts with major foundations and other parts of DHHS in the Third Primary Care Conference.

The Hospital Research and Education Trust of the American Hospital Association intends to launch an evaluation of its Kellogg Foundation funded Community Care Network demonstration. As a major funder of the evaluation component, HRSA anticipates this project will be an opportunity to describe changes in health resources allocation at the community level, with special emphasis on the roles of safety net providers including HRSA grantees.

Group Health Association of America (now American Association of Health Plans) in collaboration with HRSA, is addressing strategies to improve community-level health-care systems for Medicaid recipients and other special populations. A conference in April 1996 will launch the partnership.

2. HEALTH CARE FOR VULNERABLE POPULATIONS

Several ongoing studies are attempting to describe and assess the impacts of managed care and the development of integrated delivery systems on primary care services for vulnerable populations. Through case studies of Community Health Center (CHC) provider networks and local market areas, a variety of studies are attempting to understand the nature of new partnerships and their import for revenues, and changes in capacity and services. Some of these studies are in the context of the Medicaid waiver demonstrations. Other studies explore strategies HMOs are employing to provide care in underserved areas and the effects of those strategies on access and on the viability of existing providers. (See CHC user/visit survey)

A special working group is tracking health needs and HRSA expenditures for resources and services within the 48 counties (4 states) that border Mexico.

Two studies are underway to describe service-utilization patterns by rural residents with HIV/AIDS. Another will describe service-utilization patterns for early-stage HIV-infected individuals receiving prophylactic care. Both are based on the HIV Cost and Utilization Study, funded by the Agency for Health Care Policy and Research.

The Organ Procurement and Transplantation Program tracks the numbers and distribution of transplants, including information on insurance status and payer source.

The Bureau of Maternal and Child Health has completed a survey of how state programs for children with special needs (e.g., disabilities) are changing in response to the growth of managed care--for example, decisions surrounding specialty pediatric service capabilities.

HRSA has contracted with two think tanks-- the Urban Institute and New Directions for Health Policy--to develop concept papers that explore how the interaction of the political and economic environment is shaping the role of social programs such as those that HRSA manages. These papers begin to draw out the implications of policy transformations on the types of data collection and technical analyses that need to be developed in order to measure the value and impact of program initiatives geared to underserved populations.

3. OUTCOME MEASURES AND QUALITY IMPROVEMENT STRATEGIES

In a Community Health Centers Effectiveness Evaluation project, the focus is on a sample of 50 centers in ten states. Comparisons of utilization and expenditures will be made among AFDC and AFDC-related users and non- users of CHCs--including those enrolled in managed care. The project uses the State Medicaid Research Files (SMRFs) as they come on-line.

Within the Healthy Start Program, the process component of the demonstration to reduce infant mortality rates focuses on the efficacy of interventions undertaken by the grantees. The evaluation includes a postpartum survey (see below), site visits and focus groups. Extensive data on environmental and organizational characteristics of grantees will also be collected.

A Perinatal Transmission of Human Immunodeficiency Virus (HIV) project, which is being conducted in conjunction with the U.S. Conference of Mayors, is assessing the efforts of 7 communities using zidovudine (AZT) to prevent perinatal transmission of HIV. This intervention has demonstrated to be efficacious with Protocol 076 of the

Acquired Immune Deficiency Syndrome (AIDS) Clinical Trials Group (CDC, NIH and outside groups participate in a technical advisory board).

In the context of GPRA, HRSA is pursuing new and improved outcome measures for evaluating health services in general and its programs in particular. Examples are the use of ambulatory sensitive conditions to measure access to services.

INDIAN HEALTH SERVICE

1. ADAPTING HEALTH SERVICES TO CHANGING CIRCUMSTANCES

In administering health programs for American Indians/Alaska Natives (AI/ANs), the IHS uses direct service delivery and contract services to provide comprehensive primary health care to those eligible. The five most important themes for the IHS, tribal, and urban (I/T/U) program are the aging of the population, the continuing trend toward increased community control of services, an ever-increasing demand for services, resource limitations, and the emergence of new financing modalities.

2. AGING OF THE POPULATION

Although the birth rate is still high, the health issues faced by IHS are primarily those presented by an aging population -- e.g., chronic diseases and disabilities.

3. COMMUNITY CONTROL

The communities that are funded through the IHS appropriation are assuming increasing control of the program activities. This expansion of local control was mandated by the 1988 amendments to the Indian Self Determination Act and is actively supported by the Agency. States are creating new mechanisms for funding health services to undeserved populations. These innovations at the state level lead to a diversity of participation and billing requirements. The IHS is working closely with tribes, states, and other Federal entities to assure maximal participation of its programs and service population.

4. INCREASING DEMAND

The IHS is addressing issues related to transformations brought about by an increasing number of beneficiaries seeking health services; a demand for all services; increasing cost of health care, other goods, and staff; the number of elderly; and increasing mandates for cost containment.

5. NEW FINANCING MODALITIES

The issues of national and state health care reform issues in Medicaid managed care programs and their impact on the health services programs offered through the IHS should be explored. Collections from third party payers like Medicaid, Medicare, and private insurance programs are a major source of new revenue for tribal, urban and IHS programs. The IHS is developing a business plan for the Agency that focuses on revenue generation, expenditures, collections, and forecasting.

6. HEALTH CARE FOR VULNERABLE POPULATIONS

Alcohol abuse among AI/ANs usually begins during adolescence or earlier. The IHS has focused on offering treatment to these adolescent in order to assist the adolescent alcohol abuser with the development of a better lifestyle and to reduce overall long-term health cost to the IHS. The legislatively mandated Alcohol Regional Treatment Centers (RTCs) are an important part of the continuum of care for young people. There are currently nine RTCs with three being administered by IHS and six contracted to tribes and native organizations.

These centers need to be evaluated to a) document the impact of these new programs, including outcome measures, b) determine the level of agreement between referring and discharge diagnoses of individuals admitted to RTCs, and c) examine the characteristics and histories of the youths admitted to the RTCs and the RTC staff and determine how these compare to the staff capabilities and organization of the RTCs. The purpose of this project is to evaluate the effectiveness, efficiency, and efficacy, as well as consumer satisfaction of the RTCs that provide residential alcoholism and rehabilitative services for AI/AN youth. The evaluation will: 1) identify program outcomes in terms of quality and effectiveness; 2) establish baseline parameters on what has been accomplished; 3) establish parameters that will be required for future program outcomes; and 4) focus on and guide RTCs in continuous quality improvement measures.

The purpose of the evaluation of Indian Health Service-Supported Substance Abuse Treatment Program for American Indian/Alaska Native Women is to improve the effectiveness of substance abuse treatment services provided to American Indian/Alaska Native (AI/AN) women by IHS-supported treatment centers, and in so doing, improve the health of AI/AN women, their families and communities. The evaluation will provide information on treatment outcomes over time, attempt to relate participant outcomes to treatment services received, and assess the efficacy of supported treatment projects.

7. OUTCOME MEASURES AND QUALITY IMPROVEMENT STRATEGIES

The purpose of the Strategic Planning Evaluation Model Project is to develop an evaluation instrument that will enable the Director, Indian Health Service (IHS), to monitor and take corrective action during and at the end of each strategic planning cycle. The development process for the model will consist of the following four successive tasks: 1) design and development of the evaluation instrument; 2) establish a monitor and evaluation system; 3) monitor and test evaluation and control system; and 4) conduct year-end evaluation. The instrument will need to identify and generate data necessary to determine the extent to which IHS programs are: meeting required performance levels as established by the IHS strategic and tactical objectives; tracking and correlating budgetary information to strategic objectives/planning initiatives; and assessing organizational functions and activities throughout Headquarters, Area Offices, and Service Units. The instrument also will need to provide recommendations.

This project will provide the necessary framework for an ongoing (Stage IV) evaluation and control component for the IHS strategic planning initiative. The planned evaluation topics include initiatives to address such major issues as childhood obesity, elderly wellness, and village based women's preventive health services delivered by community health practitioners.

NATIONAL INSTITUTES OF HEALTH

1. IMPACT OF MANAGED CARE ON CLINICAL RESEARCH

NCRR commissioned a study on "The Impact of Managed Care on Clinical Research: A Preliminary Investigation," Lewin-VHI, Inc. The objective of this exploratory study was to provide a preliminary assessment of the following issues: extent to which managed care plans are perceived to limit referrals for clinical research and the perceived impact this has on the ability of investigators to conduct research effectively; perceived reasons that managed care plans limit referrals; strategies that have been developed by academic health centers to address potential concerns about referrals; clinical research topics of interest to managed care organizations; and, collaborative relationships between managed care plans and academic health centers to support or sponsor clinical research.

In response to a requirement of the NIH Revitalization Act, NCI chaired an NIH study of current reimbursement practices for investigational therapy at the request of the Office of the Assistant Secretary for Planning and Evaluation, DHHS. The study consisted of conducting a survey with high-level executives of nine large insurance companies and managed care plans to clarify their clinical trial reimbursement policies. The respondents were supportive of efforts to improve the current system for conducting and financing clinical research in the U.S. The nine executives recommended that a multidisciplinary group of experts be established to set national research priorities and develop a coordinated process for prioritizing, conducting, and financing clinical research in the U.S.; the knowledge of experts be combined to assess new technologies; specific criteria should be developed that each clinical trial must meet if third-party payers are required to cover patient care costs of individuals enrolled in high-priority clinical trials; and an analysis of cost-effectiveness of different therapies should be included within a national system for coordinating clinical research.

Under an NCI/DoD demonstration project, DoD employees with TRICARE/CHAMPUS health insurance will have access to promising cancer therapies, more options for care, and greater access to state-of-the-art treatments. Additionally, NCI has commissioned studies to examine the role of economic barriers (such as insurance reimbursement of patient care costs) to the participation of patients in NCI cancer clinical trials, and other issues.

2. IMPACT OF MANAGED CARE ON HEALTH CARE DELIVERY AND UTILIZATION

NIAAA is engaged in research to provide baseline information on the range of managed care plans, who utilizes them, and methodologies to rigorously assess the impacts of managed care on patient outcomes.

NIAMS is supporting an IOM study on "Effect of the Changing Health Care System on Rheumatic Disease." The study is examining the relationship, if any, between the mode of health care delivery and the outcomes of care interventions on populations with severe chronic illness. Two rheumatic diseases -- systemic lupus erythematosus and rheumatoid arthritis -- are used as paradigms.

NIMH is conducting studies on the: (a) impact of managed care on patients, providers and payers; (b) impact of capitated systems for Medicaid beneficiaries in Utah, and for the severely mentally ill in Colorado; (c) impact of managed care "carve-outs" in private health insurance; and (d) different aspects of various managed care payment systems. Another NIMH study is focussed specifically on the impact of managed care on child and adolescent mental health services. It will provide the first national estimates of the extent and distribution of children's mental disorders, their use of mental health services across an array of sectors and providers, and the costs associated with their problems. Special attention is being paid to obtaining an oversample of children from ethnically diverse backgrounds.

The NIDA Center for Managed Care and Drug Abuse will assess the impact of managed care on drug abuse treatment availability, content, duration, and utilization, as well as on treatment financing and organization. The Center will analyze the techniques and practices used to control access, costs and services and develop measures which could be used to improve performance and access.

An NIA study will examine long-term factors that affect health status and the use of medical care associated with poor health and disease in the elderly. NIDDK, with the Office of Disease Prevention (in the Office of the Director), proposed a set of standards for diabetes care in managed care plans, which was approved by the accreditation body for such plans. This involved greater attention to early diagnosis and disease prevention. NEI commissioned an analysis of 1991 Medicare data to quantify provider procedures and patient visit frequency for ocular disorders to assess the impact of changes in Medicare reimbursement.

3. EMERGING RESEARCH ISSUES AND THEIR IMPACT ON MANAGED CARE

NCHGR is funding research projects in the area of genetic testing to identify approaches and practices that are effective in the area of service delivery. Underlying social and ethical issues that may impact on these approaches and practices, such as informed consent for genetic testing, privacy of genetic information, and impact of genetic testing on health insurance coverage, will also be examined.

4. COMMUNITY-BASED MODELS

NIMH has a vigorous program of research aimed at developing, testing, and refining new community-based models for clinically and cost-effective outpatient care of persons with severe mental disorders.

NIEHS has a special grant program to enhance community awareness of environmental hazards and to allow the community to become an active member of an intervention team of health providers and researchers.

OFFICE OF THE ASSISTANT SECRETARY FOR PLANNING AND EVALUATION

1. HEALTH CARE SYSTEM CHANGES

Investment in a variety of studies to better understand the state of current knowledge, to develop measurement tools/analytic research information, and to identify data requirements in order to plan for future efforts. Out of these studies, OASPE will be able to develop a broader and more comprehensive research agenda for the next 2-3 years.

Other areas of major emphasis include outcome measures for managed care (a joint project with HCFA) as well as collaborative efforts with PHS agencies on health promotion, preventive services and benefits coverage in a changing private sector marketplace.

OASPE is also supporting a series of studies, some in collaboration with HCFA, to examine the impact of managed care on individuals with disabilities. These studies include large-scale evaluations related to expansion of managed care for Medicaid and Medicare disabled beneficiaries, as well as the experience of private sector employers' health plans with managed care for individuals with disabilities or chronic conditions. In addition, OASPE is supporting smaller case studies and data analysis of the experience of managed care plans in serving individuals with disabilities, the integration of home health services into managed care, the use of subacute care by managed care organizations, and quality indicators in monitoring managed care for the disabled.

Other ongoing projects focus on the changing nature of care for individuals with disabilities and long-term care needs, including studies on client-directed services, integrated acute and long-term care strategies, and residential alternatives for people with long-term care needs. Moreover, OASPE is also making major investments in improving and analyzing data related to individuals with disability and to long-term care services.

OFFICE OF PUBLIC HEALTH AND SCIENCE

1. HEALTHY PEOPLE 2000

Healthy People 2000, the national prevention initiative to improve the health of all Americans, is the product of unprecedented cooperation among government, voluntary and professional organizations, business, and individuals. The cornerstone of this effort is a set of national health-promotion and disease-prevention objectives for the year 2000. Development and publication of the objectives was coordinated by the U.S. Public Health Service (PHS).

Healthy People 2000 set three broad public-health goals for the 1990s:

increase the span of healthy life for Americans,
reduce health disparities among Americans, and
achieve access to preventive services for all Americans.

To help meet these goals, 300 specific objectives were set in 22 separate priority areas. Quantifiable targets were set for improvements in health status, risk reduction, and service delivery. Organized under the broad approaches of health promotion, health protection, and preventive services, the national objectives provide direction for the 10-year drive to improve health. Individuals, organizations, and communities will be challenged to change personal behaviors and create environments that support good health.

In 1995, the PHS reviewed the Nation's progress on its disease-prevention and health-promotion objectives. The review shows that, of the 300 objectives,

50 percent are moving toward the target,
18 percent are moving away from the target,
3 percent show no change, and
29 percent have insufficient data.

This snapshot of progress gives cause for optimism about reaching a majority of the Year 2000 targets. The assessment also illustrates the need for appropriate time-series data with which to make evaluations.

2. PERFORMANCE PARTNERSHIPS

The Administration has proposed converting 36 categorical grants to states from the Centers for Disease Control and Prevention (CDC) and the block grants administered by the Substance Abuse and Mental Health Services Administration (SAMHSA) into Performance Partnership Grants (PPGs), a new approach to funding public health programs. Under this model, the federal government and states would work together to achieve specified improvements in health outcomes. The vehicle for this collaboration, multi-year grants keyed to mutually-agreed health outcome measures, would give the states broad discretion to establish priorities, develop and implement strategies, and manage program activities without the rigidities and reporting requirements embedded in traditional categorical grants. However, the PPGs would impose a high standard of accountability for achieving results -- as measured by changes in health outcomes or improvements in capacity, risk-factor, or process measures that, when met, have a demonstrable impact on the desired health outcome. The PPG concept builds upon Healthy People 2000, state bench-marking, the Government Performance and Results Act (GPRA), the National Performance Review, and other outcomes-oriented activities .

The framework for cooperation between the federal government and states in performance partnerships is a grant-specific menu of objectives that includes outcome, process, capacity, and risk-factor reduction. States would negotiate with the Department over the specific objectives to be pursued under each grant. States would be given flexibility to choose objectives they consider most salient and to establish appropriate targets. The role of the Department is to work actively with the state toward assuring that objectives and targets selected are reasonable, that important national priorities are considered, and that the state has a credible implementation strategy.

The process for developing objectives and identifying data sources, outlined in a PPG bill passed by the Senate Labor and Human Resources Committee, included a broad based national consultation process to identify results that are important to key constituencies, followed by an independent technical review conducted by the National Research Council (NRC). A specially constituted NRC panel was charged to advise the Secretary on the feasibility of proposed performance objectives, and to identify relevant national, state, or local data sources.

OPHS and the Office of the Assistant Secretary for Planning and Evaluation contracts have supported the consultation process and the NRC technical panel. The panel is scheduled to make a preliminary report in October, 1996. After a comment period, the panel will issue a final report to the Secretary recommending a menu of objectives for each grant area, and identifying the data sources for each recommended objective. A second NRC report will recommend improvements in DHHS data systems. The reports will support the implementation of any PPGs that are enacted into law. The information will also form the basis of CDC and SAMHSA development of GPRA-required performance objectives, and be utilized in the management of current categorical grant programs. Representatives of many state and local governments have participated in the process and plan to use the reports in state- and locally initiated performance measurement activities.

3. HEALTH CARE FOR VULNERABLE POPULATIONS

Minority Health. The Office of Minority Health (OMH) supports policies, programs, services, and infrastructure/systems to ensure that disadvantaged and racial/ethnic minority populations have access to and receive appropriate, culturally and linguistically competent, and affordable health services. OMH supports minority community-based organizations to develop infrastructure to enhance the delivery of health services, including disease-prevention services. Through grants, cooperative agreements, and contracts, OMH provides direct funding to community-based, state-level, and national organizations. Through memoranda of agreement, OMH supports efforts within the Department toward ensuring service delivery to vulnerable populations, especially racial/ethnic individuals, and minimizing health disparities within the general population.

OMH has adopted a strategy of empowering minority communities by building and strengthening viable partnerships across public and private sectors to enhance program development, information sharing, and policy development. The "Minority Health Network" is a system of federal and public/private sector organizations (including community-based organizations, state and federal agencies, and individuals) that is designed to share information and coordinate activities aimed at improving the health status of racial/ethnic individuals. Included in this network are DHHS offices of minority health, OMH regional minority health consultants, state minority health entities, and the OMH Resource Person's Network (see below). The Minority Health Network is designed to cross- fertilize activities at each level of government, along with community involvement.

Medicaid Waivers. The Office of Disease Prevention and Health Promotion manages the Public Health Service input into Medicaid waiver reviews.

4. CONSUMER EDUCATION

National Health Information Center. The Office of Disease Prevention and Health Promotion continues to lead and coordinate national activities in consumer health information (CHI) and CHI technology through its National Health Information Center.

For 17 years, this Center has provided one-stop shopping for health information for consumers and health professionals.

Minority Health. The Office of Minority Health (OMH) engages in information dissemination and education as a means to equip individuals with the knowledge necessary to develop, implement, and support minority-health efforts at the state and local level. Included in this are the OMH Resource Center, OMH Resource Person's Network (a database of more than 750 minority health experts), development of issue-specific "Closing the Gap" newsletters (e.g. publications on diabetes and violence, respectively), an OMH Home Page on the Internet, periodic policy and information sharing meetings focused on minority health, and support of meetings of private- sector organizations with missions and purposes similar to OMH's to highlight issues not being sufficiently addressed at the national level.

National Women's Health Information Center. Recognizing the urgent need for easy access to the most current information on a broad range of women's health issues, the Office on Women's Health (OWH) has joined in a partnership with the U.S. Department of Defense to establish the National Women's Health Information Center (NWHIC). The NWHIC will provide a vital resource for the public, health care professionals, policy makers, researchers, and women in the military to enhance their knowledge about women's health issues. With access through both a toll-free telephone line and through the Internet, the NWHIC acts as a federal "women's health central", reducing to a single point of entry the vast array of information available through the more than 80 federal health clearinghouses and hundreds of private sector organization resources.

Serving as a switching house and single point of contact, the NWHIC does not replicate or supplant the important information dissemination functions of existing Federal programs. Rather, it simplifies the identification and ordering of existing women's health information within Federal organizations. Additionally, the NWHIC has an interactive component -- permitting consumers and health care professionals to ask health questions, to register for meetings on women's health, and to gain access to interactive services on a broad range of women's health issues.

The National Action Plan on Breast Cancer. The National Action Plan on Breast Cancer has funded 99 grants in pilot research and outreach projects that directly address the six priority areas identified by the Plan: information dissemination, national biological-resource banks, consumer involvement, breast-cancer etiology, clinical trials accessibility, and issues related to breast-cancer susceptibility genes. Many of the grants focus on improving the availability of health services and clinical trials: by identifying barriers to services and clinical trial and ways to overcome them (eight grants), and by enhancing access to breast-cancer information through the Internet, databases, and other educational materials (over 20 grants). At least 10 grants also address the effects of counseling on the quality of life and risk management for breast cancer patients and those at risk for the disease.

Canada-USA Forum on Women's Health: Workshop on Health Care Delivery . This workshop, part of the Canada-USA Forum on Women's Health, will identify trends in improving health services to women, the impact of changes in the health-care system on women's health, the evolving provider/patient relationship, and the development of new models of health-care delivery. The objectives of the Forum, and each workshop, is to exchange information on women's health policies and programs in the two countries; to increase the profile of women's health as an important public-health concern; to discuss implementation of the health section of the Platform for Action adopted at the Fourth World Conference on Women; and to agree on specific joint Canada- US initiatives to improve women's health.

"Get Real: Straight Talk on Women's Health". Today, behavioral and lifestyle factors constitute over 50% of the causation of all ten of the leading causes of death in American women. As many as one million premature deaths in the United States could be prevented through changes in behavior. In an effort to address this issue, the "Get Real" project, an innovative video and education curriculum, has the following goals:

To educate college-age women about important health issues;
To provide a forum where young women can openly discuss their health concerns;
To emphasize the importance of the behavioral components of health promotion and disease prevention; and
To empower young women to make decisions and take responsibility for their own health and well- being.

The kit consists of a 27 minute video, facilitator's guide, fact sheets, and promotional posters. The video portrays the typical activities, attitudes, and reactions of young people on college campuses today and is meant to serve as an introduction to women's health issues and to stimulate further discussion. A facilitator's guide containing in-depth information about the health issues presented in the video, ideas for initiating group discussion, and information about additional resources available to students is included for this purpose. The kit has been distributed to 1,100 colleges and universities, as well as to 3,500 sororities and various health organizations. This project was a result of the partnership between the Office on Women's Health and the Society for the Advancement of Women's Health Research.

SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION

1. CHANGES IN HEALTH CARE FINANCING

SAMHSA, using provider and patient level data collected by the Center for Substance Abuse Treatment, Office of Applied Studies' Drug and Alcohol Services Information System (DASIS), and the Center for Mental Health Services, will continue its ongoing monitoring and examination of changes in capacity, services, and revenue mix of publicly supported mental health and substance abuse providers, as well as some patient characteristics. (See Data Resources/Standards/Methods below.)

SAMHSA seeks to monitor and track the trends in public managed care from the perspectives of consumers, families, community-based mental health and substance abuse providers, county and state officials and managed care companies.

2. HEALTH CARE FOR VULNERABLE POPULATIONS

SAMHSA, using the National Household Survey on Drug Abuse, is in position to monitor the relation between income support (i.e., AFDC, SSI) problems of individuals with or at risk of addictive and mental disorders. (See Data Resources/Standards/ Methods below.) In addition, within SAMHSA's evaluation of selected demonstrations, data is collected on income and program participation which will permit SAMHSA to monitor changes in income and program participation for the vulnerable population of homeless individuals with mental illness. For example, SAMHSA will be continuing to support evaluation of the 5-year demonstrations on integrating service systems for homeless individuals with serious mental illnesses under the Access to Community Care and Effective Services and Support (ACCESS) program. Evaluation includes both a systems-level component as well as an individual level component.

3. OUTCOME MEASURES AND QUALITY IMPROVEMENT STRATEGIES

A cross-site evaluation of 22 child mental health demonstration projects includes information on diagnosed outcomes and financing of services.

Through the Alcohol Drug Services Survey (ADSS) and Services Research Outcomes Study (SROS), SAMHSA is tracking national samples of patients treated for substance abuse.

SAMHSA is working with researchers and national accrediting bodies to develop uniform quality management and accreditation standards for managed behavioral health care networks.

SAMHSA is interested in developing more systematic assessments of the impact of the anticipated and unanticipated demographic change. SAMHSA is increasing its use of demographic data in conjunction with analysis of point-prevalence data, and in monitoring the extent of change on the co-morbidity of addictive and mental disorders.

4. CONSUMER INFORMATION STRATEGIES

SAMHSA will be working on a variety of consumer related activities including demonstrations and monitoring of the consumer and family movements in mental health and substance abuse, particularly as they relate to participation in the management, operation, and evaluation of mental health, substance abuse prevention and treatment services.

SAMHSA is participating in efforts to develop a national consensus on core public interests in managed behavioral care, and creating a template or decision tree to help the public sector determine the consequences of policy choices in managed care contracting.

SAMHSA is also working with consumer groups to develop a report card on the nature and content of mental health services that is oriented to consumers.

APPENDIX 1B

ACTIVITIES RELATED TO TRANSFORMATIONS IN FINANCING, ORGANIZATION, AND AVAILABILITY OF HUMAN SERVICES

ADMINISTRATION FOR CHILDREN AND FAMILIES

1. DEMONSTRATIONS OF WELFARE REFORM

Each welfare-reform demonstration being conducted by states under waivers approved by the Administration for Children and Families (ACF) includes an evaluation component. In virtually all of the demonstrations, individuals at certain sites in the state are assigned randomly to either the demonstration program or the current rules for Aid to Families with Dependent Children (AFDC). Absent major statutory change affecting AFDC rules, the number of waivers and associated evaluations is likely to increase; whereas significant statutory change (e.g., elimination of AFDC entitlement) could induce states to discontinue the current evaluation efforts.

2. OTHER INITIATIVES TO IMPROVE SUPPORT FOR CHILDREN

Several ongoing activities are designed to enhance parental support of children: the national evaluation of the Job Opportunities and Basic Skills Training Program - JOBS (co-funded with OASPE and the Department of Education); Parent's Fair Share (co-funded with OASPE, the Department of Labor, the U.S. Department of Agriculture, and a number of private foundations); the Post-Employment Services Demonstration; and the JOBS Home Visitors Demonstration (co-funded with the Kaiser Family Foundation).

Several demonstration projects are aimed at improving the effectiveness of the program for child-support enforcement. Included are Model Offices, enhanced approaches to establishing paternity, and projects to improve performance management.

Three key projects related to child protection are focused on community-based services authorized by the Family Support and Preservation legislation. They are (a) a study to document the implementation of the family preservation/family support program, (b) an evaluation of the effectiveness of family preservation, and (c) an evaluation of the effectiveness of family support.

3. HEAD START

The research agenda associated with the Head Start Program focuses on the quality of program practices and their relationship to positive outcomes for low-income children and their families. Included are (a) the Head Start Quality Research Center Consortium; (b) longitudinal studies of children and families served in Head Start (e.g., evaluation of the Head Start/Public School Early Childhood Transition Demonstration); (c) evaluations of services for infants and toddlers (e.g., evaluations of the Early Head Start Program and the Comprehensive Child Development Program); (d) studies of special sub-populations (e.g., descriptions of the bilingual/multicultural programs and of families served by the Head Start Migrant Program); and (e) development and enhancement of research capabilities (e.g., Head Start University Partnerships).

The Study of Early Child Care, a collaborative venture with the National Institute of Child Health and Human Development, addresses key questions about the child-care histories and family environments of low-income children as they enter Head Start and other preschool programs and the concurrent child-care experiences of children enrolled in Head Start.

The Early Childhood Longitudinal Study, a survey sponsored by the Department of Education, includes a Head Start Sub-study. The latter has been designed to capture data to describe the subsequent experiences and progress of Head Start children as they move into and through the elementary-school years.

4. USE, NEED, OUTCOMES AND COSTS FOR CHILD AND ADOLESCENT POPULATIONS STUDY

This collaborative venture with the National Institute of Mental Health addresses mental-health needs, service use, and costs for children and adolescents as well as the influence of family, cultural, community, and service- system factors on service needs, utilization, and outcomes.

5. COMPREHENSIVE CHILD DEVELOPMENT PROGRAM FOLLOW-UP STUDY (CCDP)

This study, in collaboration with the MacArthur Foundation Research Network on Successful Pathways Through Middle Childhood, follows a subset of children and their families from the first cohort of CCDP programs as they move into and through the elementary-school years.

6. NATIONAL CHILD CARE RESEARCH CONSORTIUM

Through three cooperative agreements with coalitions of outside organizations (i.e., state human-services departments, universities, local-government agencies, corporations, child-care providers, and others), ACF fosters research on critical issues affecting child-care needs, policies, and programs.

7. LONGITUDINAL STUDIES ON CHILD MALTREATMENT

The National Center on Child Abuse and Neglect within ACYF/ACF provides partial funding for a consortium of investigators from universities to conduct a coordinated set of studies directed at clarifying the etiology and impact of child maltreatment. Other sponsors are the Centers for Disease Control and Prevention, the National Institute of Child Health and Human Development, and the National Institute of Mental Health.

NATIONAL INSTITUTES OF HEALTH

1. VULNERABLE POPULATIONS

NICHD supports studies on various factors, including health, social and economic issues, concerning immigration and migration. Specific studies address the effects of changes in immigration policy on legal and illegal migration from Mexico, predictors of successful immigration assimilation, patterns of urbanization, and differences in fertility and mortality between native and foreign-born populations. Other NICHD studies bring researchers and community organizations together to develop, implement and evaluate interventions targeted to minority youth to help them develop the skills to avert and avoid risky behaviors, including violence and unintended pregnancy. Additionally, NICHD-supported research is examining how family structure and function combine with societal and governmental influences to affect child well-being. NICHD is also supporting research on the specific role and impact that fathers have on families and child well-being.

NIMH conducts research on the role of the family in providing care to disabled older persons and on the stress/health outcomes associated with burdens of this care.

OFFICE OF THE ASSISTANT SECRETARY FOR PLANNING AND EVALUATION

1. WELFARE RELATED CHANGES

OASPE is collaborating with ACF, the Department of Education, and private foundations on the evaluation of the JOBS program, which includes an in-depth sub-study on children in three sites. Another study involves a synthesis of lessons learned from five state welfare waiver projects aimed at increasing work and work-related activities. Also, in collaboration with ACF, OASPE is undertaking evaluations of specific aspects of welfare waivers, such as benefit reductions or terminations, and requirements for teenage mothers

APPENDIX 1C

DATA RESOURCES/STANDARDS/TECHNOLOGY RELATED TO THE TRANSFORMATIONS

ADMINISTRATION ON AGING

1. ASSISTED LIVING

In collaboration with the Office of the Assistant Secretary for Planning and Evaluation, AoA is funding a study of assisted-living facilities.

2. ELDER ABUSE

In collaboration with the Administration for Children and Families, AoA is sponsoring a national survey of the incidence of elder abuse.

ADMINISTRATION FOR CHILDREN AND FAMILIES

1. MULTI-STATE FOSTER CARE DATA ARCHIVE

The archive provides analyses of state management data for seven of the largest states to produce comprehensive annual reports on foster care caseloads, outcomes, and other data to provide a basis for planning, development of managed care, and monitoring systems.

2. ADOPTION AND FOSTER CARE ANALYSIS AND REPORTING SYSTEM

This system is the first mandated nationwide initiative by the federal government to collect data on children in foster care and children adopted. The objective is to provide information on a host of topics including foster care placements, adoptive parents, length of time in care, delays in termination of parental rights and placement for adoption, and geographic areas with special problems. The data will enable policy-makers to assess the reasons why children are in foster care and develop means to improve the child-welfare system. Participation by the states is statutorily required.

3. NATIONAL CHILD ABUSE AND NEGLECT DATA SYSTEM

This system is the primary source of national-scale information on cases of child abuse and neglect known to child protective service agencies in the states. Participation by the states is voluntary.

4. THE NATIONAL INTEGRATED QUALITY CONTROL SYSTEM

Each month every state collects data on a representative sample of cases receiving AFDC. About 5,000 cases are sampled and reviewed each month. Information is reported to the federal government at the individual family level in a number of areas including: demographic, income, resources and payment accuracy.

5. DATA RESOURCES DEVELOPED BY/WITH PARTNER ORGANIZATIONS

ACF routinely makes use of information from surveys and other data collections conducted by other organizations to assess the status of children and the effectiveness of programs designed to enhance their well-being. Prominent among these data resources are the Survey of Income and Program Participation (Bureau of the Census), Panel Study of Income Dynamics (University of Michigan), National Longitudinal Study of Youth (Ohio State University), and the National Health Interview Survey (National Center for Health Statistics).

AGENCY FOR HEALTH CARE POLICY AND RESEARCH

1. DEVELOPMENT AND MAINTENANCE OF DATA RESOURCES

AHCPR is the Departmental lead for the Medical Expenditure Panel Survey (MEPS), which is a central element of the HHS Survey Integration Plan. MEPS collects data on the specific health services that Americans use, how frequently they use them, the cost of these services and how they are paid, as well as data on the cost, scope and breadth of private health insurance held by and available to the U.S. population. MEPS is unparalled for the degree of detail in its data, as well as its ability to link health service medical expenditures and health insurance data to the demographic, employment, economic, health status, and other characteristics of survey respondents. Moreover, MEPS is the only national survey that provides a foundation for estimating the impact of changes in sources of payment and insurance coverage on different economic groups or special populations of interest, such as the poor, elderly families, veterans, the uninsured, and racial and ethnic minorities.

MEPS is designed to help understand how the dramatic growth of managed care, changes in private health insurance, and other dynamics of today's market-driven health care delivery system have affected, and are likely to affect, the kinds, amounts, and costs of health care that Americans use. MEPS also is necessary for projecting who benefits from, and who bears the costs of, changes to existing health policy and the creation of new policies.

MEPS streamlines data collection efforts within the DHHS and eliminates duplication and unnecessary costs. In addition, MEPS links its components to the National Health Interview Survey, which enhances the analytical capabilities of both surveys. By moving from a period survey conducted every 10 years to a continuing longitudinal information collection effort, MEPS will provide more comprehensive data for public and private sector decision- makers. The first MEPS data will be available on public use data tapes starting in spring 1997.

AHCPR is collaborating with HCFA on improving the coordination of data collection and data sharing in support of research.

The Survey Users Network project is collecting information on the testing and use of consumer surveys by public and private entities. It promotes uniformity of approaches and data comparability by providing a library of questionnaire modules and technical assistance.

2. COLLABORATIVE DATA COLLECTION/ANALYSES

AHCPR is collaborating with HCFA on improving the coordination of data collection and data sharing in support of research.

The Agency has worked closely with state hospital associations and data commissions for several years to conduct comparative, longitudinal analyses of hospital utilization and costs at the state level through analyses of hospital discharge data. Recently, databases of hospital discharges, with weights for making national estimates covering 1988-1993 for all payers have been released to the public.

3. DEVELOPMENT AND VALIDATION OF ASSESSMENT METHODS

The Computerized Needs-oriented Quality/Measurement Evaluation System (CONQUEST), developed in 1995, is a collection of clinical performance measures for diagnoses and treatments that is available for evaluating managed care plans and other health services.

CENTERS FOR DISEASE CONTROL AND PREVENTION

1. THE NATIONAL VITAL STATISTICS SYSTEM

The National Vital Statistics system provides detailed data on prenatal care, teen pregnancy, out-of-wedlock birth, causes of death, life expectancy, and other fundamental measures.

2. THE NATIONAL IMMUNIZATION SURVEY (NIS)

NIS is a state-level survey associated with surveillance of immunization efforts nation-wide. Random-digit dialing is used to identify households with pre-school children. Because this subpopulation is a small fraction of the total population, the majority of the telephone contacts do not lead to any data collection beyond the fact that no pre-school children are part of the household. NIS, therefore, presents a potentially invaluable vehicle for gathering much-needed state-level information (e.g., administration of the core questionnaire from the National Health Interview Survey) while screening for households with pre-school children.

3. THE NATIONAL HEALTH INTERVIEW SURVEY (NHIS)

NHIS includes continuous measurement of health-insurance status, access to care, and health status. Special supplements extend its utility in selected high-priority areas for the Department -- e.g., access to care (1994) and disability (1994-5). NHIS is the cornerstone survey for the HHS Survey Integration Plan.

4. THE NATIONAL HEALTH AND NUTRITION EXAMINATION SURVEY (NHANES)

NHANES focuses on health status, undiagnosed conditions, prevalence of chronic diseases, and other measures based on direct physical measurement in clinical settings. As part of the HHS Survey Integration Plan, NHANES will continue to contribute to evaluation of health outcomes in relation to health needs, uses of health services, and health-care expenditures.

5. THE NATIONAL NURSING HOME SURVEY (NNHS)

NCHS collected baseline data in 1995. In 1996, the Agency for Health Care Policy and Research will collect data on nursing-home patients and associated expenditures as part of the Medical Expenditures Panel Survey. The content of these surveys is coordinated closely with the Medicare Current Beneficiary Survey sponsored by the Health Care Financing Administration.

6. THE LONGITUDINAL SURVEY ON AGING (LSOA)

The first instance of this survey (1984-1990) provided important information on health status and quality of life of older people and their use of services. NCHS is planning a second LSOA, which could be uniquely valuable for assessing the effects of changes in Medicare and Medicaid programs.

7. BEHAVIORAL RISK FACTOR SURVEILLANCE SYSTEM (BRFSS)

CDC works collaboratively with states on the BRFSS, which can serve as an important tool for monitoring health at the state level. Important applications of the BRFSS include monitoring of issues such as risk factors for disease and prevention behaviors for tracking Performance Partnership Grants, Healthy People 2000 objectives, and other state-level requirements.

8. DISEASE AND LABORATORY SURVEILLANCE

CDC is responsible for a range of disease, injury, and other surveillance systems based on reports from physicians, laboratories, or other sources. These systems will serve an important role in monitoring changes in health outcomes as transformations are made in health-care and public-health systems.

9. STATE LEVEL LINKAGE OF RECORDS

NCHS is well positioned to help states develop improved monitoring capabilities related to the well-being of their citizens, e.g., by linking vital statistics, results of disease and risk-factor surveillance, Medicaid enrollment and claims records, and other information on health status and health/human services.

10. DEVELOPMENT AND VALIDATION OF ASSESSMENT METHODS

CDC is working with several other organizations (including the National Center for Quality Assurance and the Foundation for Accountability) to refine HEDIS measures and develop others for use in measuring the extent to which managed care organizations adopt health promotion/disease prevention practices and the efficacy of those efforts.

11. POTENTIAL COLLABORATIVE EFFORTS WITH OTHER DHHS ENTITIES

Data bases developed and maintained by the Centers for Disease Control and Prevention (CDC), including those of the National Center for Health Statistics (NCHS), will be central to efforts to assess the effects of changes in policy and funding (e.g., Medicare/Medicaid changes, introduction of Performance Partnership Grants and/or new block grants) on patient care, health status, health-care delivery, coverage for health insurance, and the public- health infrastructure -- including the role of managed-care organizations in providing clinical preventive services.

HEALTH CARE FINANCING ADMINISTRATION

1. RECORDS OF CLAIMS UNDER MEDICARE AND MEDICAID

HCFA uses Medicare and Medicaid administrative claims files for a variety of research and other purposes including production of descriptive statistics on beneficiaries, health-care services, and providers. A major effort currently is underway to use the Medicaid Statistical Information System to create research files with quality comparable to those that already exist for Medicare. The continued movement of Medicare and Medicaid beneficiaries into managed care programs threatens to reduce the utility of claims information for research and evaluation purposes.

HCFA works with states and private foundations to broaden the uses of claims data for assessing the efficacy of publicly funded health-care and social-service programs. For example, under a grant from the Robert Wood Johnson Foundation, South Carolina and Mississippi individually are integrating their Medicaid claims information with vital statistics, birth and death records, and other public-use files.

2. MEDICARE CURRENT BENEFICIARY SURVEY (MCBS)

This nationally representative survey collects demographic, insurance coverage, health-care utilization, and other information from Medicare enrollees and links the data to their Medicare claims. Efforts are underway to capture more information on HMO enrollees' interactions with the health-care system and to enable direct comparisons of the experiences of HMO and fee-for-service plan enrollees. Included are projects to distinguish risk from cost of HMO enrollees, measure use and expenditures of HMO enrollees, and increase the number of HMO enrollees in the sample. A related effort in conjunction with the Agency for Health Care Policy and Research (AHCPR) involves follow-back surveys of HMOs used by MCBS respondents. Also, HCFA is modifying the MCBS instrument used in nursing homes such that it conforms to the instrument AHCPR proposes to use this year within the National Medical Expenditure Survey and more generally is exploring ways to coordinate MCBS samples and instruments with other HHS surveys.

3. OTHER MANAGED CARE DATA

Within the Medicare Program, data projects currently under development include a) beneficiary surveys at the health-plan level to assess satisfaction and facilitate inter-plan comparisons, b) preparation of plan-comparison charts to aid consumers, and c) conduct of outcome-oriented quality assessments comparing HMOs and fee-for- service plans.

Within the Medicaid Program, data projects are focused primarily on encounter-level information from managed care plans to be used by states. National standards for this data will facilitate comparisons both across plans and across states.

4. MEDICARE BENEFICIARY HEALTH STATUS REGISTRY

Funding for the Registry is slated to begin in FY1997. It will amass longitudinal data on the health status of 40,000 Medicare beneficiaries (including HMO enrollees) and be linked to utilization data from administrative claims files. The data will be used to monitor health status and health-risk behavior of beneficiaries in different delivery systems and changes in these variables; to monitor the health of incoming cohorts of beneficiaries; and to track the variation in outcomes of major medical and surgical events across delivery systems, risk groups, and geographic areas and through time.

5. DATA FROM PRO AND ESRD NETWORKS

The PRO and ESRD Networks have developed one of the largest data bases of clinical information in the nation. Clinical-data abstraction centers analyze up to 800,000 medical records per year in support of PRO projects. Quality improvement projects undertaken through the PRO and ESRD Networks routinely collect data for selected baseline and follow-up measures.

HCFA maintains comprehensive data bases related to some of the most costly diseases -- e.g., diabetes, heart attacks, and kidney diseases requiring renal dialysis. These data bases are invaluable resources for assessing issues ranging from health outcomes associated with particular interventions to the effectiveness of managed-care arrangements.

6. DATA RESOURCES DEVELOPED BY/WITH PARTNER ORGANIZATIONS

Along with AHCPR, HCFA has provided partial support for the National Employer Health Insurance Survey (NEHIS), which is conducted by the National Center for Health Statistics. Discussions currently are underway whether and, if so, how the 1996 round of NEHIS might be coordinated with or folded into the Health Insurance Plan Survey component of the AHCPR-led Medical Expenditure Panel Survey (formerly the National Medical Expenditures Survey).

HCFA collaborates with other DHHS agencies by co-funding data collections in specialized areas. These have included the National Long Term Care Survey (National Institute on Aging), the Disability Survey Supplement to the National Health Interview Survey (National Center for Health Statistics and others), and studies of the cost- effectiveness of renal dialysis centers (National Institute of Diabetes and Digestive and Kidney Diseases).

HCFA is collaborating with the National Cancer Institute to link Medicare data to tumor-registry data compiled by the Surveillance, Epidemiology, and End Results Program and thereby facilitate assessments of cancer care under both HMO and fee-for-service arrangements. HCFA also is exploring a potential collaboration with the Centers for Disease Control and Prevention focused on Medicare and Medicaid enrollees with HIV infection or AIDS.

HCFA supports the initiatives of several national organizations that are developing computer-based patient records.

HCFA's needs for state-level data on health-provider receipts could be met in part by expansion of the Services Annual Survey, which is conducted by the Bureau of the Census. Budget pressures have precluded further consideration at this time.

HEALTH RESOURCES AND SERVICES ADMINISTRATION

1. HEALTH SERVICES UTILIZATION INFORMATION

A community health center user and visit survey is being conducted in collaboration with National Center for Health Statistics. The personal interview portion of this BPHC/OPEL project is related to the National Health Interview Survey (NHIS) as well as to NHIS supplements, the National Health and Nutrition Evaluation Survey, and the National Household Survey on Drug Abuse. The survey of visits portion is modeled on the 1994 National Hospital Ambulatory Medical Care Survey. This survey will permit comparisons of managed care and non- managed care enrollees and can serve as a model for future plan-based surveys.

A Postpartum Survey, which is part of the Healthy Start evaluation (see above), covers prenatal as well as postpartum experiences and includes questions about the extent and pattern of services utilization by participants and non-participants in the Healthy Start Program.

2. INFORMATION ON ACCESS TO HEALTH SERVICES

Another related project involves geocoding the National Health Interview Survey (NHIS). The goal to is to attach census block and track identifiers to each sampled person for a decade-worth of NHIS files. This will provide increased capability for assessing trends in well-being in relation to barriers to access to health services. It can also be used to test a variety of synthetic estimating techniques for small area analysis.

Annual administrative reports from grantee service providers (e.g., migrant/community health centers, Ryan White providers) routinely include data on services, clients and changes in revenue levels. Recently revised reporting formats are attempting to collect meaningful clinical indicators. The CHC program is tracking involvement in managed care and integrated delivery systems.

3. STATE AND LOCAL LEVEL DATA SOURCES

The Area Resource File, containing an array of county-level data on health resources, health status, and related information (e.g., economic activity, social and environmental characteristics), has potential for broader use in assessing both trends in well-being and changes in local capacity to deliver services.

Data bases used to develop designations for Health Professions Shortage Areas and Medically Underserved Areas have been applied in evaluating 1115 waivers granted by the Health Care Financing Administration and potentially have broader utility for assessing both changes in service capacity and trends in well-being at the community-level.

4. DATA METHODS DEVELOPED BY/WITH PARTNER ORGANIZATIONS

The RAND Corporation (with funding from the Robert Wood Johnson Foundation) is developing methods for estimating state health expenditure accounts. Fifteen states are involved. Potential collaboration with HRSA is under discussion.

INDIAN HEALTH SERVICE

1. HEALTH SERVICES UTILIZATION INFORMATION

The IHS is seeking to expand its computing and communications capabilities to support advanced clinical, public health, and administrative information systems. IHS' Resource and Patient Management System (RPMS) needs to be expanded. Expansion of IHS' computing and communications capabilities is consistent with the National Performance Review recommendations and National Information Infrastructure initiatives to position the IHS to leverage technological advantages in all areas of health care delivery and data collection activities.

2. DATA RESOURCES DEVELOPED BY/WITH PARTNER ORGANIZATIONS

Through participation in the Domestic Policy Council, the IHS is focusing on issues related to the protection of elders and children, telecommunication systems to provide information to remote and rural areas of our country, and the sharing of services for non-medical functions of the agencies.

NATIONAL INSTITUTES OF HEALTH

1. DATA RESOURCES RELATED TO HEALTH SERVICES

The NICHD National Longitudinal Study of Adolescent Health provides a better understanding of the complex factors that promote good health among young people, and explores those factors that place youth at risk. Almost 90,000 students in grades 7-12 have taken part in the first phase of the landmark study, which is being funded by 16 other agencies within the NIH and the Public Health Service. Phase II of this study is scheduled to begin in mid 1996.

For well over a decade, the NICHD has conducted a National Survey of Adolescent Males, a longitudinal study of adolescent males in the United States. This survey examines behaviors that place young men at risk for STDs and HIV infection, as well as behaviors that lead to unintended pregnancy. In addition, NICHD supports the National Survey of Families and Households (NSFH), which is the first nationally representative study of the changing American family. It was designed to examine the behaviors that make up family processes and transitions and to study the bonds that bring individuals together within family structures. It is the first study to measure a broad range of family domains; e.g. childhood family experience, cohabitation and marital histories, current living arrangements, husband-wife and parent child relationships. Such broad coverage allows analysis of the relationship among family domains and permits the analysis of the relationship between family domains and competing non-family roles and sources of support.

NIAID AIDS databases include the Multicenter AIDS Cohort Study (MACS), Women's Interagency HIV Study (WIHS), the HIV Epidemiology Research Study (HERS) and Women and Infants Transmission Study (WITS). These databases provide comprehensive data on the clinical and immunological status, HIV risk behaviors, medications received, and health services utilization of individuals either at high risk for HIV infection or already infected with HIV.

Statistical information about cancer is available through the Physicians's Data Query (PDQ) database and the Surveillance, Epidemiology and End Results (SEER) Program. SEER contains information about cancer incidence, mortality and survival, and is linked with Medicare records so that analysis of patterns of care for the elderly can be conducted.

NIDA-supported health services research on disease progression and access to care in HIV drug abusers provides baseline information on effective treatment of HIV in drug abusers. Street-based epidemiology and ethnography research is providing information regarding HIV transmission.

NIDA-supported epidemiological studies include: Epidemiology of Drug Abuse Among Adolescent Mothers; Drug Abuse Among Young Indians - Epidemiology and Prediction; Natural History of Narcotics Addiction - 33 Year Follow-up; and, International Research on the Epidemiology of Drug Abuse.

NIMH provides baseline information in large data sets such as the Medicare systems records, the National Mortality Followback Survey (a collaborative effort of NCHS and NIMH for death by suicide), the National Medical Care Utilization Survey, and various analyses of data from the Minimum Data Set on Long-Term Care.

NLM and AHCPR jointly sponsored a large-scale assessment test directed at determining the extent to which a set of existing vocabularies covers the concepts and terminology needed in automated patient care and public health data systems. The results of this test should provide a basis for realistic estimates of the resources required to achieve and maintain a comprehensive health vocabulary that can be distributed and linked to statistical, billing, and decision support vocabularies within the UMLS Metathesaurus.

2. DATA RESOURCES RELATED TO HUMAN SERVICES

NIA-supported demography centers analyze data from longitudinal studies to project health and life expectancy, intergenerational transfers, retirement, effects of changes in health insurance plans, factors influencing growth of health care costs, long term care, and well-being of vulnerable older populations. In addition, NIA's established populations for epidemiologic studies of the elderly provide a rich source of longitudinal data on older persons in four U.S. communities. Furthermore, databases, such as the National Long-Term Care Survey, the Panel Study of Income Dynamics, Supplement on Aging II, the Health and Retirement Study and the Established Populations for Epidemiological Study represent longitudinal studies that measure health, functioning, economic status, family composition and receipt of benefits.

The NICHD is developing a research network, under a cooperative agreement, to investigate the relationship between family factors and child well-being. The Network will conduct a systematic analysis of existing data to determine what can be learned about family factors and child well-being. Each investigator in the network has demonstrated expertise and access to at least one data set relevant to this topic. This Network can provide a link between information derived from basic research to those parts of the government that operate and evaluate social service programs.

Through its Center for Population Research, the NICHD supports ongoing research to develop improved methodologies to collect demographic data. Projects include a study to test new computer-assisted methods for self- administration of survey questions on sensitive topics, studies to develop survey measures of constructs related to child development and well-being, and studies of how survey procedures could be modified to reduce bias in respondent reports. This research is also using mathematical models, which provide a theoretical foundation for indirectly estimating and understanding the interrelationships among demographic processes and a variety of health- related outcomes.

NICHD's large scale data sets for studying population/family dynamics and monitoring/ evaluating welfare reform include:

National Survey of Families and Households
National Longitudinal Survey on Youth
June Marital and Fertility History Supplement to Current Population Survey
National Survey of Family Growth

NIMH is supporting a project to develop disability assessment instruments to more reliably describe and predict the level of impairment and disability associated with physical and mental disorders. The Social Security Administration and the disability insurance industry are participating in this assessment effort.

OFFICE OF THE ASSISTANT SECRETARY FOR MANAGEMENT AND BUDGET

1. INTRANET

New network technology will facilitate the integration of data across OPDIVs and communication of data across the Department.

2. DATA WAREHOUSING

Data warehousing is a combination of several technologies which enables organizations to thoroughly analyze the tremendous amounts of data generated by daily business transactions. Agencies have had some success with ad hoc cross-agency and cross-program data matching efforts to eliminate fraud or duplicate service delivery. "Data mining", the process of automatically finding patterns and relations in large databases, promises to make those efforts faster and less costly.

3. OBJECT-ORIENTED PROGRAMMING (OOP)

OOP provides the ability to define general data structures and business logic that can be reused and modified to support applications that do essentially the same thing with, for example, 50 variations.

4. E-MAIL

Universal e-mail connectivity has not yet been achieved within the government, between the government and health-care providers and beneficiaries, or between health care providers and beneficiaries; however this will be rapidly changing.

5. INTERNET

DHHS components either plan to, or are actually distributing, grants payments by electronic funds transfer (e.g., Office of Grants and Acquisitions Management); using electronic vending and purchasing (e.g., Office of Information Resources Management (OIRM) prototype); and increasing electronic dissemination of data and other information services --e.g., via "Home Pages" accessible from anywhere in the world by the World Wide Web.

6. DIGITAL SIGNATURES

Digital signatures can provide both authentication (assurance that the recipient is really who they claim to be) and integrity assurance (a guarantee that the data arrives unchanged) to decrease the likelihood of unauthorized access to computer-based records.

7. TELEMEDICINE

DHHS has awarded grants to projects that will develop, build, and test a wide variety of health-care applications. These applications include: computerized patient records, including links to computerized images; on- line medical knowledge sources; computerized prescriptions; hospital and primary-care facility links; rural telemedicine; human anatomic simulations for health care education; teledermatology; and teleradiology.

8. ELECTRONIC BENEFITS/FUNDS TRANSFER

HHS's OIRM worked with the Office of Management and Budget (OMB) and the National Institute of Standards and Technology (NIST) regarding use of the American National Standards Institute (ANSI) electronic data interchange (EDI) standard (X12) for the Health Care Financing Administration's (HCFA) Medicare Transaction System (MTS). When implemented, MTS will use X12, as well as existing file formats on a transitional basis, to meet HCFA's current goals of 98% of Medicare Part A claims and 85% to 95% of the Part B claims being handled electronically.

The term "Smartcard" encompasses a variety of cards with varying degrees of memory and "intelligence" capabilities. The cards may contain historical patient or financial information, eligibility for various social services, and related health and human services data.

OFFICE OF THE ASSISTANT SECRETARY FOR PLANNING AND EVALUATION

1. CONCEPTUAL WORK ON DATA STRATEGIES

One of OASPE's efforts in this area would assist in clarifying the questions of high priority associated with developing strategies for improving state-level data. Since the most optimal method for collecting the required data varies with the questions that need to be answered, OASPE will focus its efforts in identifying appropriate means of enhancing state-level information, with preliminary assessments of the strengths and weaknesses of alternative strategies.

Another project is intended to define the conceptual framework for redesigning existing provider surveys in order to more accurately capture the reality of the current health care delivery system. In the wake of changes in the organization, financing and delivery of health services, there is a critical need to identify the supply side information that should be collected, differentiating between acute, post-acute and long term care and to examine the capacity to measure outcomes and cost-effectiveness in different delivery settings.

2. DATA LINKAGE

The strength of state-level survey data could be increased by developing linkages to other state and local data sets, ongoing state programs and research and demonstration data systems. While some HCFA evaluations have involved linkages of state data, such data connectivity has usually been incidental to the evaluations themselves. A series of efforts would be undertaken to promote data linkage through workshops, conferences, development of technical assistance monographs and grants to states.

HRSA's General Services Demand Model provides state-level estimates of utilization while HCFA provides estimates of state expenditures by type of service. This project would explore the feasibility of linking these two data sources. Such a link would permit analysis of such issues as the effect on public hospitals of reductions in the growth of Medicaid hospital payments or how managed care's market share affects physicians' practice patterns.

In collaboration with NCHS, OASPE will be undertaking a project to integrate health and human services information by linking data from the Survey of Income and Program Participation and the National Health Inteview Survey (including its recent Disability Followback Survey) through statistical matching. Since there is an extensive set of common variables across these surveys, such matching would permit improved simulations of how changes in health services impact on human services and vice-versa. Such information would better inform OASPE's policy analyses.

3. OUTCOME AND PERFORMANCE MEASURES

There are areas of child well-being that are not adequately addressed through currently available indicators, e.g., measure of well-being in middle childhood. This joint effort with NICHD would develop new measures of child well-being, a process that would involve identifying possible concepts, prioritizing these concepts, and testing methods to incorporate these concepts in standard data collection systems such as national surveys. It is anticipated that the results of this study would be several new measures of child well-being that could be added to the national statistical system for regular reporting.

In collaboration with ACF and NICHD, OASPE would provide partial funding for a project to work with states to incorporate child outcome measures into state data systems. Using selected state evaluations of AFDC waiver demonstrations as a pilot study, this project would involve selection of child impact measures and the development or enhancement of the states' capacities to institutionalize these measures to track trends in child well-being.

Another study, to be conducted in two phases, will result in development of a module on child outcomes for inclusion in national surveys. In collaboration with NICHD, this effort will focus on adapting a module, previously developed for the Survey of Program Dynamics, for inclusion in national data collection activities and identifying age cohort(s) most relevant for tracking.

Through the performance partnership conferences and follow-up work with the National Academy of Sciences, a set of performance measures will be developed for CDC and SAMHSA programs. In collaboration with these two agencies as well as the Office of Public Health and Science, OASPE will continue its investment in converting the management of these programs into a performance partnership and support other OPDIVs in progressing towards such outcome-based performance.

4. DEVELOPMENT OF SURVEY INSTRUMENTS/METHODOLOGIES

CDC currently utilizes a random digit dialing approach in its child immunization telephone survey. This OASPE project would focus on developing and pilot testing broader use and applicability of this approach for collecting other state level health and program participation data. It is anticipated that state-specific information on health care coverage, access, health status, income and program participation could be collected. In the pilot phase, estimates could be developed for a few states and the results compared with results from in-home household surveys.

Another study that will yield useful insights for survey development is the effort to capitalize on the focus groups that AHCPR uses to help develop questions for the provider follow-back component of MEPS. Such focus groups could also address topics of interest to OASPE that are not currently part of the follow-back survey.

OASPE has underway a project to develop and test a survey instrument that would collect fringe benefit information from employers of the employed portion of respondents in the Survey of Income and Program Participation. The instrument, developed in consultation with SSA, DOL and other DHHS agencies, will collect information on health insurance, life insurance, child care, etc. The field test will also determine likely response rates and provide estimates of implementing a full scale fringe benefits module.

Working with the Committee on National Statistics, agencies within DHHS, other federal agencies responsible for collecting/maintaining statistics, and the OMB, OASPE will review current approaches to survey questions to adjust for transformations that have taken place in the health and human services arenas.

OASPE also provides ongoing support to a number of national data collection efforts that are key to establishing baseline information and monitoring national trends. These include the National Longitudinal Survey of Youth - 2, the Panel Study of Income Dynamics, the Adolescent Health Survey, the National Survey of Homeless Assistance

Providers and Clients, the Disability Survey, and the Next-of-Kin Supplement to the 1994 Long Term Care Survey.

5. EVALUATION OF DATABASES

HRSA's Area Resource File is a vast database of county-level information drawn from other primary sources of data. The File, which includes information on health resources, health status, health facilities, health utilization and socioeconomic/demographic characteristics for all counties, is potentially a very valuable resource. In providing support for continuing maintenance and updating of this database, OASPE will lead a Departmental review of the File to assess its utility and costs, identify its users and uses, examine the viability of its current size and contents, determine which data sets need to be preserved/eliminated/added, explore means of enhancing its utility so as to increase the number of its users and develop recommendations to improve the File.

OFFICE OF PUBLIC HEALTH AND SCIENCE

1. The Office of Public Health and Science, primarily through the Office of Disease Prevention and Health Promotion and in collaboration with partner organizations, will expand efforts to improve nationally available data on public health infrastructure, especially focusing on local public health and will support a similar effort conducted by several pilot states to categorize funding for public (population-based) health. The results will provide local health officials and planners with a tested tool for estimating the level of support for essential public health functions.

2. The Office of Minority Health strives to ensure that relevant and timely data are collected, analyzed, and reported on racial/ethnic populations; and it advocates in all appropriate venues for the inclusion of statistical information relevant to health status of and health care for minorities.

3. The Office on Women's Health is working in partnership with the National Institute of Health Care Management, an organization of Blue Cross health plans, to conduct a survey of Medicaid Managed Care plans on the impact of these plans on women's health. Information will be gathered regarding outreach to women and underserved populations, preventive services, quality and utilization management studies, marketing, access to health services for women, community involvement, and outreach training.

SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION

1. HEALTH SERVICES UTILIZATION INFORMATION

The Center for Mental Health Services has population, epidemiologic and service use data to predict future need for service sites.

The National Household Survey on Drug Abuse permits monitoring in trends in substance abuse, but also has data on income and some program participation information. SAMHSA is in position to monitor impact of income support change on individuals with or at risk of addictive and mental disorders.

The Center for Substance Abuse Treatment gathers income support on clients served in treatment demonstration projects.

2. STATE AND LOCAL LEVEL DATA RESOURCES

Certain SAMHSA data (Center for Substance Abuse Treatment Block Grant reporting, Office of Applied Studies DASIS system and Center for Mental Health Services inventory data) might be a resource for state level information for research and evaluation.

States under the Substance Abuse Block Grant conduct needs assessments related to substance abuse which could be used to look at changes in substance abuse at the state level.

3. DEVELOPMENT OF VALIDATION OF RESEARCH METHODS

SAMHSA is working on improving its household interview response rates by use of computerized interviewing systems and questionnaire design enhancements.

SAMHSA intends to improve substance abuse treatment provider response rates by augmentation of the identification and classification of substance abuse treatment providers.

SAMHSA will improve data quality by examining techniques to check validity of data collected.

SAMHSA will explore the possibility of surveying populations that are difficult to reach in the household survey.

Appendix 2: Activities by AGENCY/OFFICE

ADMINISTRATION ON AGING

ACTIVITIES RELATED TO TRANSFORMATIONS IN FINANCING, ORGANIZATION, AND AVAILABILITY OF HEALTH SERVICES

1. "REDEFINING RETIREMENT"

Through its leadership of this HHS-wide initiative, AoA is focusing on the demographic and other trends that the Department must reckon with in formulating an array of coherent, mutually reinforcing policies and programs, particularly in terms of the baby boom generation's retirement in the 21st century.

2. NATIONAL ACADEMY ON AGING

The Academy serves as a national forum for policy analysis and debate on the major issues associated with aging. No appropriations for FY1996 cloud the future of the Academy.

3. NATIONAL RESOURCE AND POLICY CENTERS

DATA RESOURCES/STANDARDS/TECHNOLOGY RELATED TO THE TRANSFORMATIONS

1. ASSISTED LIVING

In collaboration with the Office of the Assistant Secretary for Planning and Evaluation, AoA is funding a study of assisted-living facilities.

2. ELDER ABUSE

In collaboration with the Administration for Children and Families, AoA is sponsoring a national survey of the incidence of elder abuse.

ADMINISTRATION FOR CHILDREN AND FAMILIES

ACTIVITIES RELATED TO TRANSFORMATIONS IN FINANCING, ORGANIZATION, AND AVAILABILITY OF HUMAN SERVICES

1. DEMONSTRATIONS OF WELFARE REFORM

Each welfare reform demonstration being conducted by states under waivers approved by the Administration for Children and Families (ACF) includes an evaluation component. In virtually all of the demonstrations, individuals at certain sites in the state are assigned randomly to either the demonstration program or the current rules for Aid to Families with Dependent Children (AFDC). Absent major statutory change affecting AFDC rules, the number of waivers and associated evaluations is likely to increase; whereas, significant statutory change (e.g., elimination of AFDC entitlement) could induce states to discontinue the current evaluation efforts.

2. OTHER INITIATIVES TO IMPROVE SUPPORT FOR CHILDREN

3. HEAD START

4. USE, NEED, OUTCOMES AND COSTS FOR CHILD AND ADOLESCENT POPULATIONS STUDY

5. COMPREHENSIVE CHILD DEVELOPMENT PROGRAM FOLLOW-UP STUDY (CCDP)

6. NATIONAL CHILD CARE RESEARCH CONSORTIUM

Through three cooperative agreements with coalitions of outside organizations (i.e., state human services departments, universities, local government agencies, corporations, child-care providers, and others), ACF fosters research on critical issues affecting child-care needs, policies, and programs.

7. LONGITUDINAL STUDIES ON CHILD MALTREATMENT

DATA RESOURCES/STANDARDS/TECHNOLOGY RELATED TO THE TRANSFORMATIONS

1. MULTI-STATE FOSTER CARE DATA ARCHIVE

2. ADOPTION AND FOSTER CARE ANALYSIS AND REPORTING SYSTEM

This system is the first mandated nationwide initiative by the federal government to collect data on children in foster care and children adopted. The objective is to provide information on a host of topics, including foster care placements, adoptive parents, length of time in care, delays in termination of parental rights and placement for adoption, and geographic areas with special problems. The data will enable policy-makers to assess the reasons why children are in foster care and develop means to improve the child-welfare system. Participation by the states is statutorily required.

3. NATIONAL CHILD ABUSE AND NEGLECT DATA SYSTEM

This system is the primary source of national-scale information on cases of child abuse and neglect known to child protective service agencies in the states. Participation by the states is voluntary.

4. THE NATIONAL INTEGRATED QUALITY CONTROL SYSTEM

5. DATA RESOURCES DEVELOPED BY/WITH PARTNER ORGANIZATIONS

AGENCY FOR HEALTH CARE POLICY AND RESEARCH

ACTIVITIES RELATED TO TRANSFORMATIONS IN FINANCING, ORGANIZATION, AND AVAILABILITY OF HEALTH SERVICES

1. STUDIES OF CHANGES IN SERVICE DELIVERY AND MARKETS

AHCPR sponsors research on the organization and performance of health care providers within the more competitive marketplace. For example, in November 1995 the Agency awarded research grants concerning "Market Forces" to ten prominent research teams. They will address the impacts of HMO market penetration on costs and insurance premiums, the formation of provider networks, responses of rural providers, effects of mergers, and whether savings in the production of service are being passed on to consumers. Most of the projects will be completed in two years or less.

Other current and planned research is concerned with changes in the internal organization, incentives, and impacts of delivery systems. This research focuses, for example, on the spectrum of legal and financial arrangements between managed care entities and provider networks, changes in the continuum and locus of acute and long-term care, the impact of varying payment methods on utilization of particular services, changes in patterns of referral of patients to specialists as well as new approaches to the use of specialists in managed care.

Recent AHCPR-supported research provided several insights about outcomes of managed care: the amount of time HMO doctors spend with their patients, provision of preventive services, the use of intensive care by HMO hospital patients, and the treatment of chronically ill patients in managed care plans. Future research will attempt to link these types of outcomes more precisely to organizational features and payment incentives in new delivery systems.

2. STUDIES OF HOUSEHOLD INSURANCE COVERAGE AND EXPENDITURES

The Agency will continue a long history of research, based on an intensive household survey, provider surveys and databases, as well as grant-supported projects, on the role of health insurance in expenditures for health care, access to care, as well as the cost and quality of service. This includes analyses of access and utilization by race and ethnicity, payer source, and location. Recent research has focused, for example, on issues such as barriers to care under Medicaid, barriers to immunization, and emergency department use in managed care.

3. TECHNICAL ASSISTANCE TO STATES AND OTHER USERS OF AGENCY DATA

Through the User Liaison Program, the Agency has commissioned studies of major programmatic changes affecting states, and has convened experts for state workshops to provide comprehensive analyses of the implications of many of these changes. The Agency also provides ongoing technical assistance to states and others who use Agency data such as the NMES and the HCUP to conduct their own analyses.

AHCPR is also working actively with national consortia such as the Foundation for Accountability and The HMO Group, industry groups such as the AAHP (formerly, GHAA/AMCRA) and the AMA to identify areas in which the agency can provide technical assistance or other support for efforts to develop approaches to measuring or benchmarking quality of care and consumer satisfaction with health care.

4. OUTCOME MEASURES AND QUALITY IMPROVEMENT STRATEGIES

The Computerized Needs-oriented Quality/Measurement Evaluation SysTem (CONQUEST) provides a computer-based data source on existing clinical performance measures for diagnoses and treatments. It allows managed care plans, providers, or employers to identify, compare, and select measures most meaningful in their environment. The system also can be used to learn about, evaluate, apply, and interpret clinical quality measures. The system was developed in 1995 and will be tested and further refined.

AHCPR is collaborating with HRSA to sponsor research on effects of short maternity stays.

AHCPR continues to work with HCFA on improving the coordination of data collection and data sharing for research purposes, and with HCFA and other HHS agencies on issues related to the evaluation of Medicaid managed care demonstrations.

In 1995, AHCPR joined the American Association of Health Plans (formerly Group Health Association of America) in sponsoring a conference designed to build bridges between the health services research and managed care communities. A special forum for several HHS agencies (including CDC, HCFA, NIAAA, NIDA, AND NIMH) provided an opportunity for participants to interact with these agencies, and gain an understanding of their mission. Agencies highlighted their research on issues of concern to the managed care industry.

In 1996, a second "Building Bridges" conference assessed areas in which research can contribute to improvement in health plan performance. Presentations described the implementation of clinical guidelines, consumer satisfaction surveys, and other efforts by managed care organizations aimed at higher quality and more cost effective health care. A third "Building Bridges" conference will take place in 1997.

A project co-funded by AHCPR and HRSA/BHPr is examining the effect of physician specialty training on the costs and quality of primary care in health maintenance organizations.

AHCPR is working with the Veterans Health Administration under a Memorandum of Understanding to facilitate cooperation on a range of health services and medical effectiveness studies. Better coordination and standardization of data in areas such as utilization and outcomes of care could be very useful for monitoring changes.

5. CONSUMER INFORMATION STRATEGIES

Oregon Scorecard Project: AHCPR is assisting Oregon in the development of a scorecard to help consumers evaluate access and quality of care provided under the state-supported health insurance program. Collaborators include the AHCPR Rural Research Center at the University of Washington, the Oregon Health Sciences University and the state.

Consumer Assessment of Health Plans Study (CAHPS): This project will assess consumer preferences for information on health plans and how consumers use information. The CAHPS project will gather information and test its usefulness in helping consumers make an informed choice of health plan.

Survey Users Network (SUN): This related project is collecting information on the testing and use of consumer surveys by public and private entities and encouraging development of more uniform and comparable data. The project will help States, providers, and employers put together better consumer surveys through access to a library of questionnaire modules and technical assistance. As part of the project, the Agency will also survey the need for technical assistance related to sampling and analysis.

Development of Innovative Information Tools: Six Small Business Innovation Research Program projects are developing innovative computer software and other materials to help consumers, including minorities, persons who are disabled, and persons who have low reading skills, make informed choices.

The Agency is working with the Kellogg Foundation, the RWJ Foundation, and private sector organizations such as the Alzheimer's Foundation to explore potential areas of collaboration, especially in developing and distributing information useful to consumers, and information needed by federal, state and local policymakers.

DATA RESOURCES/STANDARDS/TECHNOLOGY RELATED TO THE TRANSFORMATIONS

1. MEDICAL EXPENDITURE PANEL SURVEY (MEPS)

MEPS streamlines data collection efforts within the DHHS and eliminates duplication and unnecessary costs. In addition, MEPS links its components to the National Health Interview Survey, which enhances the analytical capabilities of both surveys. By moving from a period survey conducted every 10 years to a continuing longitudinal information collection effort, MEPS will provide more comprehensive data for public and private sector decisionmakers. The first MEPS data will be available on public use data tapes starting in spring 1997.

2. COLLABORATIVE DATA COLLECTION/ANALYSES

AHCPR is collaborating with HCFA on improving the coordination of data collection and data sharing in support of research.

CENTERS FOR DISEASE CONTROL AND PREVENTION

ACTIVITIES RELATED TO TRANSFORMATIONS IN FINANCING, ORGANIZATION, AND AVAILABILITY OF HEALTH SERVICES

1. INTERACTIONS WITH STATE AND LOCAL HEALTH DEPARTMENTS

DATA RESOURCES/STANDARDS/TECHNOLOGY RELATED TO THE TRANSFORMATIONS

1. THE NATIONAL VITAL STATISTICS SYSTEM

The National Vital Statistics system provides detailed data on prenatal care, teen pregnancy, out-of-wedlock birth, causes of death, life expectancy, and other fundamental measures.

2. THE NATIONAL IMMUNIZATION SURVEY (NIS)

3. THE NATIONAL HEALTH INTERVIEW SURVEY (NHIS)

4. THE NATIONAL HEALTH AND NUTRITION EXAMINATION SURVEY (NHANES)

5. THE NATIONAL NURSING HOME SURVEY (NNHS)

6. THE LONGITUDINAL SURVEY ON AGING (LSOA)

7. BEHAVIORAL RISK FACTOR SURVEILLANCE SYSTEM (BRFSS)

CDC works collaboratively with states on the BRFSS, which can serve as an important tool for monitoring health at the state level. Important applications of the BRFSS include, monitoring of issues such as risk factors for disease and prevention behaviors for tracking Performance Partnership Grants, Healthy People 2000 objectives, and other state-level requirements.

8. DISEASE AND LABORATORY SURVEILLANCE

9. STATE-LEVEL LINKAGE OF RECORDS

NCHS is well positioned to help states develop improved monitoring capabilities related to the well-being of their citizens -- e.g., by linking vital statistics, results of disease and risk-factor surveillance, Medicaid enrollment and claims records, and other information on health status and health/human services.

10. DEVELOPMENT AND VALIDATION OF ASSESSMENT METHODS

CDC is working with several other organizations (including the National Center for Quality Assurance and the Foundation for Accountability) to refine HEDIS measures and develop others for use in measuring the extent to which managed-care organizations adopt health-promotion/disease-prevention practices and the efficacy of those efforts.

11. POTENTIAL COLLABORATIVE EFFORTS WITH OTHER DHHS ENTITIES

HEALTH CARE FINANCING ADMINISTRATION

ACTIVITIES RELATED TO TRANSFORMATIONS IN FINANCING, ORGANIZATION, AND AVAILABILITY OF HEALTH SERVICES

1. MEDICAID MANAGED-CARE DEMONSTRATIONS

HCFA also has collaborated with the Robert Wood Johnson Foundation and the Pew Charitable Trust regarding development of several managed-care projects under Medicaid 1115 demonstrations. Broader collaborations with private foundations with respect to quality issues associated with managed care would be desirable.

Evaluations of the state-based Medicaid 1115 demonstrations present formidable challenges. The states' proposals cover many different types of initiatives and baseline data often are severely limited. Moreover, if legislative proposals such as those considered during the past year ultimately are enacted (e.g., transformation of Medicaid to block grants with elimination of entitlements), the changes almost certainly would supersede the ongoing demonstrations in most instances and force a comprehensive revision of the strategy for evaluating impacts of the states' initiatives.

2. MEDICARE MANAGED CARE DEMONSTRATIONS

The CHOICES project is designed to investigate alternate models of Medicare managed-care plans and alternatives to current capitation methodology -- in particular, risk-sharing with HCFA and reinsurance. Participating plans will be expected to incorporate any risk-adjustment models (e.g., a health-status adjustment) as part of the payment method to be demonstrated. Quality indicators to support the study are being developed.

The End Stage Renal Disease (ESRD) Capitation Demonstration provides payment for dialysis at a single capitation rate rather than for each treatment session.

3. OTHER CHANGES IN HEALTH-CARE FINANCING

HCFA is also sponsoring a multi-site Medicare demonstration designed to examine the cost-effectiveness of reimbursing telemedicine services in rural areas.

4. HEALTH CARE FOR VULNERABLE POPULATIONS

Several projects focus on individuals who are eligible for both Medicare and Medicaid (dual eligibles) and are implemented in partnership with states. The objective is to integrate acute and long-term care services under one capitated financing arrangement. One such effort is the Social HMO Initiative, which is designed to expand managed care to ESRD beneficiaries and the frail elderly. Another is the Program for All-Inclusive Care for the Elderly (PACE), which features a specialized delivery system oriented to frail elderly who live in the community but are certifiable for nursing home care. HCFA is collaborating on other dual-eligible projects in Minnesota, Oregon, Arizona, and Maine.

Two demonstration projects focused on beneficiary-centered care feature the use of vouchers to give Medicare/Medicaid beneficiaries more control over acquisition of health services. One project involves vouchers for purchase of durable medical equipment for the physically handicapped. The other project, a collaboration with Rhode Island, is intended to develop a voucher system for purchase of home and community-based services for Medicaid-eligible persons with developmental disabilities.

5. OUTCOME MEASURES AND QUALITY IMPROVEMENT STRATEGIES

6. CONSUMER INFORMATION STRATEGIES

HCFA is developing and testing improved information resources that are intended to help consumers choose among health-care plans and providers, based on their relative value and quality. The same information may also be shared with health-plan managers, health-care providers, and others to assist them in being more responsive to the preferences and needs of beneficiaries.

DATA RESOURCES/STANDARDS/TECHNOLOGY RELATED TO THE TRANSFORMATIONS

1. RECORDS OF CLAIMS UNDER MEDICARE AND MEDICAID

2. MEDICARE CURRENT BENEFICIARY SURVEY (MCBS)

3. OTHER MANAGED CARE DATA

4. MEDICARE BENEFICIARY HEALTH STATUS REGISTRY

5. DATA FROM PRO AND ESRD NETWORKS

6. DATA RESOURCES DEVELOPED BY/WITH PARTNER ORGANIZATIONS

HCFA supports the initiatives of several national organizations that are developing computer-based patient records.

HEALTH RESOURCES AND SERVICES ADMINISTRATION

ACTIVITIES RELATED TO TRANSFORMATIONS IN FINANCING, ORGANIZATION, AND AVAILABILITY OF HEALTH SERVICES

1. STUDIES OF SYSTEMIC CHANGES

2. HEALTH CARE FOR VULNERABLE POPULATIONS

A special working group is tracking health needs and HRSA expenditures for resources and services within the 48 counties (4 states) that border Mexico.

The Organ Procurement and Transplantation Program tracks the numbers and distribution of transplants, including information on insurance status and payer source.

The Bureau of Maternal and Child Health has completed a survey of how state programs for children with special needs (e.g., disabilities) are changing in response to the growth of managed care--for example decisions surrounding specialty pediatric service capabilities.

3. OUTCOME MEASURES AND QUALITY IMPROVEMENT STRATEGIES

DATA RESOURCES/STANDARDS/TECHNOLOGY RELATED TO THE TRANSFORMATIONS

1. HEALTH SERVICES UTILIZATION INFORMATION

A Postpartum Survey, which is part of the Healthy Start evaluation (see above), covers prenatal as well as postpartum experiences and includes questions about the extent and pattern of service utilization by participants and non-participants in the Healthy Start Program.

2. INFORMATION ON ACCESS TO HEALTH SERVICES

3. STATE AND LOCAL LEVEL DATA SOURCES

4. DATA RESOURCES DEVELOPED BY/WITH PARTNER ORGANIZATIONS

INDIAN HEALTH SERVICE

ACTIVITIES RELATED TO TRANSFORMATIONS IN FINANCING, ORGANIZATION, AND AVAILABILITY OF HEALTH SERVICES

1. ADAPTING HEALTH SERVICES TO CHANGING CIRCUMSTANCES

Aging of the Population. Although the birth rate is still high, the health issues faced by IHS are primarily those presented by an aging population -- e.g., chronic diseases and disabilities.

Community Control. The communities that are funded through the IHS appropriation are assuming increasing control of the program activities. This expansion of local control was mandated by the 1988 amendments to the Indian Self Determination Act and is actively supported by the Agency. States are creating new mechanisms for funding health services to undeserved populations. These innovations at the state level lead to a diversity of participation and billing requirements. The IHS is working closely with tribes, states, and other Federal entities to assure maximal participation of its programs and service population.

Increasing Demand. The IHS is addressing issues related to transformations brought about by an increasing number of beneficiaries seeking health services; a demand for all services; increasing cost of health care, other goods, and staff; the number of elderly; and increasing mandates for cost containment.

Resource Limitations. Leaders in government and health care are talking about changes in services that affect public health, the poor and the underprivileged. There are a large number of public, social, and welfare programs that are being considered for budget cuts or elimination. These reductions affect the IHS programs that directly serve AI/ANs on and off the reservations.

New Financing Modalities. The issues of national and state health care reform issues in Medicaid managed care programs and their impact on the health services programs offered through the IHS should be explored. Collections from third party payers like Medicaid, Medicare, and private insurance programs are a major source of new revenue for tribal, urban and IHS programs. The IHS is developing a business plan for the Agency that focuses on revenue generation, expenditures, collections, and forecasting.

2. HEALTH CARE FOR VULNERABLE POPULATIONS

Alcohol Abuse. Alcohol abuse among AI/ANs usually begins during adolescence or earlier. The IHS has focused on offering treatment to these adolescent in order to assist the adolescent alcohol abuser with the development of a better lifestyle and to reduce overall long-term health cost to the IHS. The legislatively mandated Alcohol Regional Treatment Centers (RTCs) are an important part of the continuum of care for young people. There are currently nine RTCs with three being administered by IHS and six contracted to tribes and native organizations.

Substances Abuse. The purpose of the evaluation of Indian Health Service-Supported Substance Abuse Treatment Program for American Indian/Alaska Native Women is to improve the effectiveness of substance abuse treatment services provided to American Indian/Alaska Native (AI/AN) women by IHS-supported treatment centers, and in so doing, improve the health of AI/AN women, their families and communities. The evaluation will provide information on treatment outcomes over time, attempt to relate participant outcomes to treatment services received, and assess the efficacy of supported treatment projects.

3. OUTCOME MEASURES AND QUALITY IMPROVEMENT STRATEGIES

Strategic Planning Evaluation Model. The purpose of the project is to develop an evaluation instrument that will enable the Director, Indian Health Service (IHS), to monitor and take corrective action during and at the end of each strategic planning cycle. The development process for the model will consist of the following four successive tasks: 1) design and development of the evaluation instrument; 2) establish a monitor and evaluation system; 3) monitor and test evaluation and control system; and 4) conduct year-end evaluation. The instrument will need to identify and generate data necessary to determine the extent to which IHS programs are: meeting required performance levels as established by the IHS strategic and tactical objectives; tracking and correlating budgetary information to strategic objectives/planning initiatives; and assessing organizational functions and activities throughout Headquarters, Area Offices, and Service Units. The instrument also will need to provide recommendations.

DATA RESOURCES/STANDARDS/TECHNOLOGY RELATED TO THE TRANSFORMATIONS

1. HEALTH SERVICES UTILIZATION INFORMATION

2. DATA RESOURCES DEVELOPED BY/WITH PARTNER ORGANIZATIONS

NATIONAL INSTITUTES OF HEALTH

ACTIVITIES RELATED TO TRANSFORMATIONS IN FINANCING, ORGANIZATION, AND AVAILABILITY OF HEALTH SERVICES

1. IMPACT OF MANAGED CARE ON CLINICAL RESEARCH

In response to a requirement of the NIH Revitalization Act, NCI chaired an NIH study of current reimbursement practices for investigational therapy at the request of the Office of the Assistant Secretary for Planning and Evaluation, DHHS. The study consisted of conducting a survey with high-level executives of nine large insurance companies and managed care plans to clarify their clinical trial reimbursement policies. The respondents were supportive of efforts to improve the current system for conducting and financing clinical research in the U.S. The nine executives recommended that a multidisciplinary group of experts be established to set national research priorities and develop a coordinated process for prioritizing, conducting, and financing clinical research in the U.S.; the knowledge of experts be combined to assess new technologies; specific criteria should be developed that each clinical trial must meet if third-party payers are required to cover patient care costs of individuals enrolled in high-priority clinical trials; and, an analysis of cost-effectiveness of different therapies should be included within a national system for coordinating clinical research.

2. IMPACT OF MANAGED CARE ON HEALTH CARE DELIVERY AND UTILIZATION

3. EMERGING RESEARCH ISSUES AND THEIR IMPACT ON MANAGED CARE

4. COMMUNITY-BASED MODELS

ACTIVITIES RELATED TO TRANSFORMATIONS IN FINANCING, ORGANIZATION, AND AVAILABILITY OF HUMAN SERVICES

1. VULNERABLE POPULATIONS

NIMH conducts research on the role of the family in providing care to disabled older persons and on the stress/health outcomes associated with burdens of this care.

DATA RESOURCES/STANDARDS/TECHNOLOGY RELATED TO HEALTH AND HUMAN SERVICES TRANSFORMATIONS

1. DATA RESOURCES RELATED TO HEALTH SERVICES

For well over a decade, the NICHD has conducted a National Survey of Adolescent Males, a longitudinal study of adolescent males in the United States. This survey examines behaviors that place young men at risk for STDs and HIV infection, as well as behaviors that lead to unintended pregnancy. In addition, NICHD supports the National Survey of Families and Households (NSFH), which is the first nationally representative study of the changing American family. It was designed to examine the behaviors that make up family processes and transitions and to study the bonds that bring individuals together within family structures. It is the first study to measure a broad range of family domains (e.g., childhood family experience, cohabitation and marital histories, current living arrangements, husband-wife and parent child relationships). Such broad coverage allows analysis of the relationship among family domains and permits the analysis of the relationship between family domains and competing non-family roles and sources of support.

2. DATA RESOURCES RELATED TO HUMAN SERVICES

NICHD's large scale data sets for studying population/family dynamics and monitoring/ evaluating welfare reform include:

National Survey of Families and Households
National Longitudinal Survey on Youth
June Marital and Fertility History
Supplement to Current Population Survey
National Survey of Family Growth

OFFICE OF THE ASSISTANT SECRETARY FOR MANAGEMENT AND BUDGET

DATA RESOURCES/STANDARDS/TECHNOLOGY RELATED TO THE TRANSFORMATIONS IN HEALTH AND HUMAN SERVICES

1. INTRANET

New network technology will facilitate the integration of data across OPDIVs and communication of data across the Department.

2. DATA WAREHOUSING

Data warehousing is a combination of several technologies which enables organizations to thoroughly analyze the tremendous amounts of data generated by daily business transactions. Agencies have had some success with ad hoc cross-agency and cross-program data matching efforts to eliminate fraud or duplicate service delivery. "Data mining," the process of automatically finding patterns and relations in large databases, promises to make those efforts faster and less costly.

3. OBJECT ORIENTED PROGRAMMING (OOP)

4. E-MAIL

5. INTERNET

6. DIGITAL SIGNATURES

Digital signatures can provide both authentication (assurance that the recipient is really

who they claim to be) and integrity assurance (a guarantee that the data arrives unchanged) to decrease the likelihood of unauthorized access to computer-based records.

7. TELEMEDICINE

8. ELECTRONIC FUNDS/BENEFITS TRANSFER

HHS's OIRM is working with the Office of Management and Budget (OMB) regarding the use of the National Institute of Standards and Technology's (NIST) electronic data interchange (EDI) standard (X.12) for the Health Care Financing Administration's (HCFA) Medicare Transaction System (MTS). When implemented, MTS will use X.12 to meet HCFA's current goals of 98% of Medicare Part A claims and 85% to 95% of the Part B claims being handled electronically.

OFFICE OF THE ASSISTANT SECRETARY FOR PLANNING AND EVALUATION

ACTIVITIES RELATED TO TRANSFORMATIONS IN FINANCING, ORGANIZATION AND AVAILABILITY OF HEALTH SERVICES

1. HEALTH CARE SYSTEM CHANGES

ACTIVITIES RELATED TO TRANSFORMATIONS IN FINANCING, ORGANIZATION AND AVAILABILITY OF HUMAN SERVICES

1. WELFARE RELATED CHANGES

DATA RESOURCES/STANDARDS/TECHNOLOGY RELATED TO THE TRANSFORMATIONS

1. CONCEPTUAL WORK ON DATA STRATEGIES

2. DATA LINKAGE

Medicaid hospital payments or how managed care's market share affects physicians' practice patterns.

3. OUTCOME AND PERFORMANCE MEASURES

4. DEVELOPMENT OF SURVEY INSTRUMENTS/METHODOLOGIES

CDC currently utilizes a random digit dialing approach in its child immunization telephone survey. This OASPE project would focus on developing and pilot testing broader use and applicability of this approach for collecting other state level health and program participation data. It is anticpated that state-specific information on health care coverage, access, health status, income and program participation could be collected. In the pilot phase, estimates could be developed for a few states and the results compared with results from in- home household surveys.

5. DEVELOPMENT/EVALUATION OF DATABASES

OFFICE OF PUBLIC HEALTH AND SCIENCE

ACTIVITIES RELATED TO TRANSFORMATIONS IN FINANCING, ORGANIZATION, AND AVAILABILITY OF HEALTH SERVICES

1. HEALTHY PEOPLE 2000

Healthy People 2000 set three broad public-health goals for the 1990s:

increase the span of healthy life for Americans,
reduce health disparities among Americans, and
achieve access to preventive services for all Americans.

In 1995, the PHS reviewed the Nation's progress on its disease-prevention and health-promotion objectives. The review shows that, of the 300 objectives,

50 percent are moving toward the target,
18 percent are moving away from the target,
3 percent show no change, and
29 percent have insufficient data.

2. PERFORMANCE PARTNERSHIPS

OPHS and the Office of the Assistant Secretary for Planning and Evaluation contracts have supported the consultation process and the NRC technical panel. The panel is scheduled to make a preliminary report in October, 1996. After a comment period, the panel will issue a final report to the Secretary recommending a menu of objectives for each grant area, and identifying the data sources for each recommended objective. A second NRC report will recommend improvements in DHHS data systems. The reports will support the implementation of any PPGs that are enacted into law. The information will also form the basis of CDC and SAMHSA development of GPRA-required performance objectives, and utilized in the management of current categorical grant programs. Representatives of many state and local governments have participated in the process and plan to use the reports in State- and locally initiated performance measurement activities.

3. HEALTH CARE FOR VULNERABLE POPULATIONS

OMH has adopted a strategy of empowering minority communities by building and strengthening viable partnerships across public and private sectors to enhance program development, information sharing, and policy development. The "Minority Health Network" is a system of federal and public/private sector organizations (including community-based organizations, state and federal agencies, and individuals) that is designed to share information and coordinate activities aimed at improving the health status of racial/ethnic individuals. Included in this network are DHHS offices of minority health, OMH regional minority health consultants, state minority health entities, and the OMH Resource Person's Network (see below). The Minority Health Network is designed to cross- fertilize activities as each level of government, along with community involvement.

Medicaid Waivers. The Office of Disease Prevention and Health Promotion manages the Public Health Service input into Medicaid waiver reviews.

4. CONSUMER EDUCATION

For 17 years, this Center has provided one-stop shopping for health information for consumers and health professionals.

National Women's Health Information Center. Recognizing the urgent need for easy access to the most current information on a broad range of women's health issues, the Office on Women's Health (OWH) has joined in partnership with the U.S. Department of Defense to establish the National Women's Health Information Center (NWHIC). The NWHIC will provide a vital resource for the public, health care professionals, policy makers, researchers, and women in the military to enhance their knowledge about women's's health issues. With access through both a toll-free telephone line and through the Internet, the NWHIC acts as a federal "women's health central, " reducing to a single point of entry the vast array of information available through the more than 80 federal health clearinghouses and hundreds of private sector organization resources.

Serving as a switching house and single point of contact, the NWHIC does not replicate or supplant the important information dissemination functions of existing federal programs. Rather, it simplifies the identification and ordering of existing women's health information within federal organizations. Additionally, the NWHIC has an interactive component -- permitting consumers and health care professionals to ask health questions, to register for meetings on women's health, and to gain access to interactive services on a broad range of women's health issues.

The National Action Plan on Breast Cancer. The National Action Plan on Breast Cancer has funded 99 grants in pilot research and outreach projects that directly address the six priority areas identified by the Plan; information dissemination, national biological-resource banks, consumer involvement, breast-cancer etiology, clinical trials accessibility, and issues related to breast-cancer susceptibility genes. Many of the grants focus on improving the availability of health services and clinical trials: by identifying barriers to services and clinical trial and ways to overcome them (eight grants), and by enhancing access to breast-cancer information through the Internet, databases, and other educational materials (over 20 grants). At least 10 grants also address the effects of counseling on the quality of life and risk management for breast cancer patients and those at risk for the disease.

To educate college-age women about important health issues;
To provide a forum where young women can openly discuss their health concerns;
To emphasize the importance of the behavioral components of health promotion and disease prevention; and
To empower young women to make decisions and take responsibility for their own health and well- being.

DATA RESOURCES/STANDARDS/TECHNOLOGY RELATED TO THE TRANSFORMATIONS

SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION

ACTIVITIES RELATED TO TRANSFORMATIONS IN FINANCING, ORGANIZATION, AND AVAILABILITY OF HEALTH SERVICES

1. CHANGES IN HEALTH CARE FINANCING

2. HEALTH CARE FOR VULNERABLE POPULATIONS

SAMHSA, using the National Household Survey on Drug Abuse, is in position to monitor the relation between income support (i.e., AFDC, SSI) problems of individuals with or at risk of addictive and mental disorders. (See Data Resources below) In addition, within SAMHSA's evaluation of selected demonstrations, data is collected on income and program participation which will permit SAMHSA to monitor changes in income and program participation for the vulnerable population of homeless individuals with mental illness. For example, SAMHSA will be continuing to support evaluation of the 5-year demonstrations on integrating service systems for homeless individuals with serious mental illnesses under the Access to Community Care and Effective Services and Support (ACCESS) program. Evaluation includes both a systems-level component as well as an individual level component.

3. OUTCOME MEASURES AND QUALITY IMPROVEMENT STRATEGIES

A cross-site evaluation of 22 child mental health demonstration projects includes information on diagnosed outcomes and financing of services.

Through the Alcohol Drug Services Survey (ADSS) and Services Research Outcomes Study (SROS), SAMHSA is tracking national samples of patients treated for substance abuse.

SAMHSA is working with researchers and national accrediting bodies to develop uniform quality management and accreditation standards for managed behavioral health care networks.

4. CONSUMER INFORMATION STRATEGIES

SAMHSA is also working with consumer groups to develop a report card on the nature and content of mental health services that is oriented to consumers.

DATA RESOURCES/STANDARDS/TECHNOLOGY RELATED TO THE TRANSFORMATIONS

1. HEALTH SERVICES UTILIZATION INFORMATION

The Center for Mental Health Services has population, epidemiologic and service use data to predict future need for service sites.

The Center for Substance Abuse Treatment gathers income support on clients served in treatment demonstration projects.

2. STATE AND LOCAL LEVEL DATA RESOURCES

States under the Substance Abuse Block Grant conduct needs assessments related to substance abuse which could be used to look at changes in substance abuse at the state level.

3. DEVELOPMENT OF VALIDATION OF RESEARCH METHODS

SAMHSA is working on improving its household interview response rates by use of computerized interviewing systems and questionnaire design enhancements.

SAMHSA intends to improve substance abuse treatment provider response rates by augmentation of the identification and classification of substance abuse treatment providers.

SAMHSA will improve data quality by examining techniques to check validity of data collected.

SAMHSA will explore the possibility of surveying populations that are difficult to reach in the household survey.

Topics

Healthcare Reform