National Addiction and HIV Data Archive Program: Developing an Approach for Reuse of Sensitive and Confidential Data

Abstract

Sharing data produced through health research projects has been increasingly recognized as a way to advance science more rapidly by facilitating discovery and increasing rigor and reproducibility. Much of the data collected from human subjects includes sufficient sociodemographic detail and/or covers sensitive topics and thus requires restricted data management and sharing practices. Over the last two decades, scientific organizations, presidential memoranda, and other sources have all called for increasing opportunities to share data. Recognizing the value of shared data, the National Institutes of Health (NIH) has issued a new Data Management and Sharing (DMS) Policy (Office of the Director, 2020), effective January 25, 2023. Prior to this updated policy, in 2009, the National Institute on Drug Abuse (NIDA) recognized the value of sharing data and established an archive, the National Addiction and HIV Data Archive Program (NAHDAP). This program focused on sharing data that was often highly sensitive generated from social and behavioral addiction research, including quantitative and qualitative assessments as well as biomarker and imaging data. NAHDAP has developed practices and curation standards to ensure datasets are improved and usable and provides technical assistance for both data depositors and users. We share three key lessons learned working to disseminate sensitive data over the last 13 years, including (1) protecting the confidentiality of human subjects, (2) ensuring careful consideration of costs for archiving data requiring human subject protections are managed, and (3) providing support to facilitate the discovery and use of the data. While this article will not provide a comprehensive review of these areas, we will provide major insights from our experiences while developing this archive program.