Engaging Study Participants in Research Dissemination at a Center for Population Health and Health Disparities.

Abstract

Research dissemination is a priority for The Partnership for Understanding and Eliminating Disparate Outcomes (PUEDO) for Latinas, a Center for Population Health and Health Disparities located at the Fred Hutchinson Cancer Research Center (FHCRC). We aimed to identify types of PUEDO research findings our participants wanted and why, dissemination audiences beyond PUEDO participants, and strategies to communicate diverse findings about breast cancer and breast cancer disparities. Five focus groups with PUEDO study participants (N = 25) were transcribed for qualitative content analysis (average participants per focus group, 5; range, 2-11). Participants reported wanting to learn aggregate and personal results and were influenced by their life experiences, their experiences as study participants, and the relevance they believed specific results would have for their lives. Women advocated for broad dissemination and inclusive communication using a simple paper-based strategy that would be accessible to diverse audiences (e.g., study participants, policymakers, recent immigrants). Focus groups informed PUEDO's dissemination strategy, which concentrates on study participants and the regional Latino community. This approach to dissemination should maximize information uptake and community benefit.