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.
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:
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:
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.
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:
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.
Implicit in the Secretary's charge are four questions that span the spectrum of health and human services:
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 |
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 |
| 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.,
| |
| 2. Scope and content of policies | ||
| 3. Administrative organization | 2. By geographic scales
| |
| 4. Financing: resource levels | ||
| 5. Financing: mechanisms/ incentives | 3.
By special populations, e.g.,
| |
| 6. Service providers: numbers/ modalities | ||
| 7. Efficacy of various modalities |
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 |
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:
Whereas, for cases where the service transformation of interest is a controlled intervention, formal research-design principles, including the following, may be preferable:
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.
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:
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:
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.
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:
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.
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:
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, 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:
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.
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.