Data, Data Everywhere, But Access Remains a Big Issue for Researchers: A Review of Access Policies for Publicly-Funded Patient-level Health Care Data in the United States

Abstract

Introduction: High quality research regarding treatment effectiveness, quality, and value is critical for improving the U.S. health care system. Recognition of this has led federal and state officials to better leverage existing data sources such as medical claims and survey data, but access must be balanced with privacy concerns. Methods: We reviewed and catalogued data access policies for a selection of publicly-funded federal and state datasets to investigate how such policies may be promoting or limiting research activities. Results: We found significant variation in data access policies across federal agencies and across state agencies, including variation for multiple datasets available from the same agency. We also observed numerous indirect hurdles to use of data, including complex data use application procedures, high user fees, and prolonged wait times for data delivery. Conclusions: Policy makers and data owners should consider making changes to data access policies to maximize the utility and availability of these valuable resources.