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


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.


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.

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.