Information Needs Associated with the Changing Organization and Delivery of Health Care: Summary of Perceptions, Activities, Key Gaps, and Priorities. 2. How Good Has the Information Been?


Periodic reviews have been conducted to develop information and/or consensus on the adequacy of available information. Federal data, more than state data, have been subject to review, although there is some information on state data. Reports assessing data collected by private-sector groups are less likely to be publicly available. Most assessments preceded the current marketplace changes and addressed specific kinds of data for which agencies had defined accountability. This limits the comprehensiveness of the scope of the efforts. The most relevant assessments we found are from the periodic reports issued by the National Committee for Vital and Health Statistics (NCVHS), the typically more broad-based and topical studies funded through the Institute of Medicine (IOM), contracted studies of health expenditure accounts, and foundation-funded studies of state health data. We review each of these briefly below; Appendix D includes a fuller discussion of these historical assessments.

NCVHS Reports. Standing committees established for advising National Center for Health Statistics’ (NCHS) data collection activities have issued periodic reports, which tend to be technical in focus. The most relevant is a recent report (US DHHS 1996) recommending a standardized set of health data elements for capturing person- and encounter-level information. The impetus for NCVHS’s work is a concern about the administrative burden of inconsistency in data collection and reporting activities and about the confusion generated by lack of standardized health data definitions. NCVHS efforts to develop standardized person- and encounter-level data do not appear to have focused on the impact of the changing marketplace on individual data elements. For  example, the payer and charge information included is relatively traditional and fee-for-service based.

Institute of Medicine. The IOM has convened panels to study a number of issues related to health data, one of which we highlight here (See Appendix D for more details and additional studies). 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 fee-forservice 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. In our view, the IOM recommendations focus mostly on the need for person-level information to support public policy. They focused less on private sector needs for institutional-level data and data needs of specific health interests. Many of those we spoke with in the private sector wanted more information in the structural arrangements of the health sector on operational performance.

National Health Expenditures. HCFA and others have sponsored work on issues relating the needs for information about health accounts of expenditures. Haber and Newhouse (1991) discuss emerging issues and review existing revisions to the accounts such as to better estimate out-of-pocket spending directly. They also highlight the growing prevalence of vertical integration and managed care, which creates a need for classifications of expenditures that are more responsive to type of service than type of provider. Self-insurance is flagged as a potential threat to the quality and completeness of data on private insurers. Genuardi, Stiller, and Trapnell (1996) consider expenditure data for the prescription drug sector, pointing out changes in the industry with managed care that influence data needs. Ginsburg and Pickereign (1996) assess the policy utility and quality of data used to track health care costs. The authors compare the quality and utility of three kinds of data: provider data on revenues or costs, claims data from insurers, and premium data from employees.

State Data. Long, Marquis, and Rogers (1995) focus on states priorities for state health expenditure data. Gold, Burnbauer, and Chu (1995/1996, 1995) report on a 1994 telephone survey that asked state officials about their perception of data needs and weaknesses. The findings show low levels of policymakers’ confidence in the ability to address emerging, but priority, health issues with existing data. Major gaps in data include health expenditures (particularly for expenditures in the private sector and outside of institutions) and on health system and health plan performance. The major barriers to improving the data include funding shortages, lack of comparability across datasets, and the unwillingness of providers and insurers to submit needed data.

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