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


The IOM has convened panels to study a number of issues related to health data. With funding from NCHS, the IOM issued a report in 1992 that evaluated NCHS’s planned National Health Survey, which would integrate the four health provider surveys with the National Health Interview Survey. The IOM concluded that current systems are uncoordinated and although duplicative at times, they also suffer from important gaps. The IOM cited four areas for priority attention: (1) better insurance claims data, especially for the under-65 population, for the feefor- service and the prepaid capitated sector; (2) more information on clinical services and physiologic outcomes from medical records; (3) more information from patients (or proxies) on quality of life, health status, and satisfaction with care; and (4) better information on how much is spent (directly and indirectly, including out-of-pocket expenses) on treating particular types of patients. The IOM included the user surveys in its 1992 report and considerable external input, but the emphasis was on the needs of current users, typically from the government or research communities. In our view, the focus of the IOM recommendations is the need for person-level information to support public policy rather than the need for institutional-level analysis or the data needs of specific health interests. That is, there is more focus on the inputs and outputs of care than on the organization of resource inputs and processes of care that potentially influence outputs and outcome. In addition, the focus is more on how well and efficiently the system works for people and less on how it is structured or how entities in it perform or are influenced by change, an area of considerable interest to many of those we spoke with in the private sector. The IOM report includes specific recommendations for reformulating current surveys that are beyond the scope of this paper.

The IOM also has convened other workgroups to focus on issues important to the development of policy-relevant data. In 1995, the IOM issued a report on integrating federal health statistics on children. The summary in the report highlights relevant cross-cutting themes, including the need to link resources and child health outcomes, to assess the effects of state variations in resources and outcomes, and to coordinate efforts across agencies and the public and private sectors. Newachek and Starfield (IOM 1995) developed a paper assessing data needs using the population, the health plan and provider, and health system each as the units of analysis for monitoring health care reform. In their construct, health provider domains include health care services and effectiveness of care. Health system domains include health care resources and health care expenditures. Data issues they flagged for consideration include the comprehensiveness and timeliness of information, meeting descriptive and analytical needs, capacity to assess change, capacity to measure short- and long-term effects of change, provision of adequate geographical detail in measures, capacity to assess outcomes for vulnerable populations, creating flexibility needed to address emerging issues, and integrating efforts of different data developers. The paper concludes by urging that data collection and analysis strategies be jointly considered.

In 1996, the IOM reported on primary care delivery and needs to reorient training. Among its recommendations was a call for better information systems and quality assurance programs for primary care. The IOM also recommended the use of uniform methods and measures to monitor the performance of health care systems and primary care clinicians, careful monitoring by the government of provider supply and federal and state requirements for primary care clinicians, and a national probability sample database with episode- and population-based information. Standards for data collection were also recommended.

The IOM (1995) also has reported on workforce and educational issues for health services research. It highlighted weaknesses in the supply of researchers with “real world” experience who can support research in the following areas: organization and financing of health care (markets, risk selection, and payment rates), access to health care; practitioner, patient, and consumer behavior; quality of care; clinical evaluation and outcomes research; informatics and clinical decision making; and the health professions workforce, including better ways to forecast, plan, and manage. These areas of noted weakness are ones that relate heavily to the “supply side” of the system.

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