Sharing Restricted Data for Secondary Research: Evolving Tools and Protocols
Investigators: James McNally
Funding: National Institute on Aging, 2013-2016 (1 R03 AG 046524 01)
In recent years growing concern over data confidentiality has directly impacted access to and the availably of research data for secondary analysis. This project intends to develop and implement consistent protocols for sharing restricted-use data collections. Specifically, the National Archive of Computerized Data on Aging (NACDA) will implement the following three related objectives. Work with NIA-funded aging centers and other major research entities to develop “safe harbor” agreements that will allow a defined set of client organizations with established compliance to have streamlined access to restricted data resources. Establish standardized distribution protocols for HIPAA data that simplify the sharing of such data while respecting HIPAA requirements. And develop standardized tools and documents to address IRB requirements for secondary data analysis. We expect this work to greatly facilitate the use of restricted data for secondary analysis, and provide a lasting impact on the research potential of federally funded studies with specific disclosure risk issues.