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Improving Health Data Access: State Policymakers Weigh In

Janet M. Coffman and Margaret Fix, Philip R. Lee Institute for Health Policy Studies at the University of California, San Francisco

State policymakers are hungry for health care data to help inform their decisions. What types of data are they interested in, and how would they make them available?

In 2011, the California Health Care Foundation launched its Free the Data initiative, designed to improve access to data by consumers and policymakers, a particularly critical need as California implements the Affordable Care Act (ACA).

To understand the experiences and priorities of state policymakers with government health care data, the Philip R. Lee Institute for Health Policy Studies at the University of California, San Francisco, conducted an assessment. This report summarizes findings regarding state-level data currently available, policymakers' use of that data, their priorities for improving data access, and barriers to access. The paper also lists sources of machine-readable California health care data.

Based on the findings, three areas were identified to improve collection of and access to state health care data:

  • Provision of resources to improve access. Key data of interest relate to Medi-Cal, health plan enrollment, and benefit design. Access can be improved by storing all data in machine-readable formats, by standardizing data collection across state agencies, and by building tools to facilitate publishing and finding public-domain data. There is also considerable interest in collecting new data, particularly those related to implementation of the ACA and to physician-level data on quality of care.
  • Advocacy for legal changes. A matrix of state and federal laws limit access to some data pertinent to policymaking. Maximizing available data may require privacy officers, attorneys, and program managers from state agencies to develop a consensus on relaxing such limits.
  • Communication among stakeholders regarding innovations in data collection and dissemination. A professional network could be established in California to share ideas and lessons learned about expanding health data access. Similarly, a series of convenings and webinars could be organized to review best practices and to showcase the work of other states.

The complete report is available under Document Downloads.

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