Information Needs Associated with the Changing Organization and Delivery of Health Care: Summary of Perceptions, Activities, Key Gaps, and Priorities. 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.

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