Information Needs Associated with the Changing Organization and Delivery of Health Care: Summary of Perceptions, Activities, Key Gaps, and Priorities. C. Process and Outcome Data Gaps: Suggestions for Action


There is a need for better information on system performance and the outputs of care, whether expressed in process or outcome measures, or measured at different levels of aggregation. These include difficulty of obtaining transaction data outside a fee-for-service environment, or in a central location anywhere for the under 65 population, the lack of standardization, and the difficulty of associating performance with specific expenditures or accountable parties.

Unlike the structural data gaps discussed above, the needs have been recognized for some time, and there is ongoing activity that promises to address some of them. A clear illustration is the current extensive work being undertaken by HHS and others to implement the HIPAA of 1996. Yet it is also clear from a review of the historical record that serious barriers have limited past efforts to improve and standardize transaction data to support analysis, and also other features of current systems. Overcoming these gaps is key to the development of improved performance measures and outcome indicators. While efforts around the HIPAA are important opportunities for  standardization, their impact will be constrained if data to standardize do not exist or it is not clear what structure of the health care system to code and how.

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