Public perspectives on increased data sharing in health research in the context of the 2023 National Institutes of Health Data Sharing Policy.

ABSTRACT: The National Institutes of Health (NIH) is the largest public research funder in the world. In an effort to make publicly funded data more accessible, the NIH established a new Data Management and Sharing (DMS) Policy effective January 2023. Though the new policy was available for public comment, the patient perspective and the potential unintended consequences of the policy on patients' willingness to participate in research have been underexplored. This study aimed to determine: (1) participant preferences about the types of data they are willing to share with external entities, and (2) participant perspectives regarding the updated 2023 NIH DMS policy. A cross-sectional, nationally representative online survey was conducted among 610 English-speaking US adults in March 2023 using Prolif

SUBMITTER: Nino de Rivera S 

PROVIDER: S-EPMC11357082 | biostudies-literature | 2024

REPOSITORIES: biostudies-literature