AMIA Urges NIH to Strengthen Participant Access to Clinical Research Results

AMIA submitted comments supporting NIH’s proposed policy to share study results with clinical research participants. AMIA recommends ensuring participant choice, accessible and culturally appropriate communication, and strong privacy protections. Our letter emphasizes clear reporting standards, responsible use of AI, adequate funding, and reusable infrastructure to reduce administrative burden. AMIA also urges NIH to provide practical implementation guidance and flexible compliance requirements.