Abstract / Summary
Abstract Background There is limited practical guidance for researchers and oversight boards in identifying and addressing group-level risks in the context of repository-enabled research. The Community Health Interests for Researchers & Oversight Networks (CHIRON) Toolkit is a community co-designed, nudge-theory-informed online intervention developed to support repository researchers, ethics boards, and data access committees in systematically considering community-level interests and risks in their work. This study reports a qualitative evaluation of how the Toolkit was received when used across four repository-research settings. Methods We piloted the CHIRON Toolkit at four sites between October 2024 and June 2025 with eleven participants, including repository researchers, data access committee members, and ethics professionals. We collected qualitative data through semi-structured interviews at three timepoints per site and through participant-completed exploration guides. We used reflexive thematic analysis to examine meanings participants attributed to their experiences, enriched by contextual analysis across four layers and community expert co-analysis of pilot data. Results Analysis identified nine parent themes across four contextual layers: transparency, context confusion, “not my job,” comfort versus challenge, readability and interpretation, US context, personal and professional identities, nudging versus instructing, and thinking together versus thinking alone. Themes were organized across four contextual layers ranging from toolkit design to societal context. Themes revealed a fundamental tension between transactional change—incremental improvements within existing institutional structures—and transformational change—structural reorientation toward community-centered governance. While CHIRON prompted meaningful reflection among participants, their responses were largely constrained by institutional norms, professional role boundaries, and organizational expectations. Community experts, through co-analysis, identified these shifts as promising but incomplete, consistently prioritizing community interests over institutional convenience. Conclusions Transactional governance tools like CHIRON are necessary but insufficient to ensure communities benefit from repository-enabled research. Complementary structural reforms—in oversight committee mandates, funder requirements, researcher training, and the redistribution of decision-making power—are needed to move from incremental improvement toward transformational, community-centered governance of repository-enabled research.