Overview
The purpose of this project is to explore options for creating standard protocols for the protection, availability, and sharing of health research and care data identified by the NIH Researcher Auth Service (RAS) community.
Background
Biomedical research data are currently located in separate systems with unique system-specific login and permission frameworks. Because these resources are currently siloed, researchers must manage multiple credentials when attempting to access data platforms to conduct research. Researchers are unable to move from system to system using one set of credentials, which causes delays in accessing information and completing full research exercises.
To support science and reduce the burden on researchers’ access to NIH-funded biomedical research data and to enhance the security of the NIH data ecosystem, the NIH Researcher Auth Service (RAS) facilitates access to open and controlled NIH data assets and repositories in a consistent and user-friendly manner. RAS service offerings include authentication, authorization, and logging services to access NIH open and controlled data assets and repositories. In addition, researchers can link identities from multiple identity providers such as eRA Commons (eRA) and login.gov.
As new identity providers are made available through RAS and more NIH data repositories are integrating with RAS, challenges and opportunities for improvements in accessing NIH and non-NIH biomedical and health information and completing full research exercises have become more apparent.
Some of these areas are:
- Access to relevant and useful data in repositories funded by other government agencies (e.g. HHS, VA/DHA), patient-generated “real world data” sources, and administrative data hosted by healthcare and related organizations
- Common data protection, availability, and sharing requirements for data types that biomedical researchers seek to co-analyze (e.g. clinical, genomics, imaging, digital health, and administrative data)
- Identity and access protocols and related standards in use by US and international public and private data repositories (e.g. OpenID Connect, NIST, the InCommon Federation, and Global Alliance for Genomics and Health passports)
- User experience across disparate repositories and identity providers and cloud service providers
Deliverables
Whitepaper outlining best practices and recommendations for creating standard protocols for the protection, availability, and sharing of health research and care data identified by the NIH Researcher Auth Service (RAS) community. Beyond a paper-based deliverable, one or more additional formats (e.g. digital website with interactive capabilities, recorded video presentation/ panel discussion, podcast interview with SMEs, etc.) for sharing the information in the whitepaper is requested.