Historically, the greatest amount of information has been collected on the structure and components of care that define available resources. Less information has been collected on operational process and performance, particularly in the ambulatory setting, and least has been collected on outcomes of care. However, gaps exist within each of these three types of health information.
Highlights and Key Findings
- HHS’s interest in the information needs and associated data gaps created by the rapid transformation of the health system clearly strikes a responsive chord among diverse stakeholders. Our findings show that stakeholders perceive information on the “supply side” of the health system to be very important, with gaps in data serving as a major obstacle to their efforts to serve their constituency, address operational needs, and participate in the policy process.
- We focused on supply side information (i.e. health care suppliers, and insurers and what they report) and identified three types of information: (1) components and structure of the system (that is, the inputs to care), (2) operational process and performance features; and (3) the policy-relevant outcomes of health care delivery.
- We found two major ways in which the current environment has intensified the need for information. First, the growth of managed care and consolidation has generated a heightened demand for information on the structure and linkages in the health care system. Second, the growing interest in accountability, competition and cost containment has heightened the focus on having good operational data on performance or outcomes achieved by health plans and providers for specific populations.
- Stakeholders point to a number of critical questions as illustrative of the kinds of information needed. To answer these questions, there would need to be: (1) better information on health insurers/plans and the arrangements through which providers are linked with plans and integrated systems, and (2) better transaction level data, with appropriate clinical detail and structural links to support analysis of operational performance and outcomes.
- Stakeholders also perceive that national data are not sufficient in today’s environment. State and local level data are needed as well. Further, they want data to be flexible enough to support diverse analyses and timely enough to be relevant when the health care system is rapidly changing.
- We identified 23 ongoing efforts within the private sector, states and foundations/research communities to address data gaps and studied 11 of them more comprehensively. Though sponsors of these activities perceive them to be focused on high priority issues, they also perceive significant limitations in the scope of their efforts. These arise because of limited resources, lags in data availability which limit timeliness, and less willingness to provide information in a highly competitive environment with extensive data demands. In addition, quality problems and inconsistencies in available information, combined with a lack of standardization or audit, serve as barriers to enhancing information.
Historical Context for Available Information and New Information Needs
Historically, users of information on the health system have relied heavily on private and statebased sources that complement federal efforts. Information on health system components, resources and structures has been maintained separately for health providers and health insurers. The focus has mainly been on information about discrete entities or individual providers rather than their characteristics or relationships with one another. Information on process of care has been based mainly on discharge/encounter level data for institutional services. Data from which outcome measures can be constructed have been highly limited.
We found that many but not all of the information needs and gaps cited in our study have been the focus of attention in previous studies, that preceded the current market changes. These studies include those by the National Committee for Vital and Health Statistics, the Institute of Medicine, the Health Care Financing Administration, and foundations particularly concerned with state data. The existing studies have focused on the inputs and outputs of care rather than on the way these inputs are organized and structured and the effects of these structures--a topic of considerable interest to many of those we spoke with in the private sector. Further, many of the needs identified in earlier studies remain today.