Community Partnership in Precision Medicine: Themes from a Community Engagement Conference

In: Ethnicity & disease: an international journal on population differences in health and disease patterns, Band 28, Heft Supp, S. 503-510

Abstract

Background: Patient and community engagement in under-resourced communi­ties is a key issue for precision medicine research. We report proceedings from a community-academic partnered confer­ence in Los Angeles to promote community understanding of precision medicine and generate engagement recommendations.Methods: Planning group review of plan­ning, presentations, and audience discus­sions from facilitator notes and participant survey data from a one-day conference.Findings: Community-academic planning broadened community participation and presentations. More than 80% of survey par­ticipants indicated they would participate in the national precision medicine initia­tive, and most were willing to share diverse sources of data. Discussions identified trust concerns related to historical research abus­es, data privacy, potential effects of findings on health care, personal safety, research procedures, the time-frame for benefit, and confusion about different initiatives. Con­cerns were balanced by belief in science to improve health. Recommendations in­cluded a community partnered participatory approach with support for local community and academic teams to engage stakeholders with written/online resources and partnered workgroups addressing key concerns.Conclusion: Conference participants expressed high willingness to participate in precision medicine studies, but discus­sions highlighted trust and transparency issues and suggested community partnered research with local capacity building.Ethn Dis. 2018:28(Suppl 2):503-510; doi:10.18865/ed.28.S2.503.