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

Jones L1,2, Wells K3, Lin HJ4, Wang C5, Alo AK6, Williams P1,2,5, Jones F1, Dickson PI5, Han S5, Pardo D7, Norris K8, Jones A1,2, Wright A1,2,9, Young K10, Rotter JI4.

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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.