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:
- 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.