A qualitative study of diversity in precision medicine research: The development and stakeholder assessment of a...

The diversity gap in precision medicine research (PMR) participation has led to efforts to boost the inclusion of underrepresented populations. Yet our prior research shows that study teams need greater support to identify key decision-making issues that influence diversity and equity, weigh competing interests and tradeoffs, and make informed research choices. We therefore developed a Diversity Decision Map (DDM) to support the identification of and dialogue about study practices that impact diversity, inclusion, and equity.

The DDM is empirically derived from a qualitative project that included a content analysis of documents, observations of research activities, and interviews with PMR stakeholders. We identified activities that influenced diversity goals and created a visual display of decision-making nodes, their upstream precedents, and downstream consequences. To assess the potential utility of the DDM, we conducted engagements with stakeholder groups (regulatory advisors, researchers, and community advisors).

These engagements indicated that the DDM helped diverse stakeholder groups trace tradeoffs of different study choices for diversity, inclusion, and equity, and suggest paths forward. Stakeholders agreed that the DDM could facilitate discussion of tradeoffs and decision-making about research resources and practices that impact diversity. Stakeholders felt that different groups could use the DDM to raise questions and dilemmas with each other, and shared suggestions to increase the utility of the DDM.

Based on a research life course perspective, and real-world research experiences, we developed a tool to make transparent the tradeoffs of research decisions for diversity, inclusion, and equity in PMR.