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

Community Partnership in Precision Medicine Themes from a Community Engagement Conference

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. Planni...

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Bibliographic Details
Published in:Ethnicity & disease Vol. 28; no. Suppl 2; pp. 503 - 510
Main Authors: Jones, Loretta, Wells, Kenneth B., Lin, Henry J., Wang, Christina, Alo, Audrey Kawaiopua, Williams, Pluscedia, Jones, Felica, Dickson, Patricia I., Han, Sophia, Pardo, Dominga, Norris, Keith, Jones, Andrea, Wright, Aziza Lucas, Young, Kawen, Rotter, Jerome I.
Format: Journal Article
Language:English
Published: United States Ethnicity & Disease, Inc 06-09-2018
International Society on Hypertension in Blacks
Subjects:
Original Report: New Directions: Innovations
Under-resourced Communities
Partnered Research
Research Ethics
Community Engagement
Precision Medicine
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Summary: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. Planning group review of planning, presentations, and audience discussions from facilitator notes and participant survey data from a one-day conference. 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. 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.
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Competing Interests: None declared.
Research concept and design: L Jones, Wells, Lin, Wang, F Jones, Dickson, Pardo, Norris, A Jones, Wright, Rotter; Acquisition of data: L Jones, Wells, Lin, F Jones, Han, Norris, A Jones, Wright, Young, Rotter; Data analysis and interpretation: L Jones, Wells, Lin, Alo, Williams, F Jones, Han, Norris, Young, Rotter; Manuscript draft: L Jones, Wells, Lin, Wang, Alo, Williams, F Jones, Dickson, Pardo, Norris; Statistical expertise: Wells; Acquisition of funding: L Jones, Wells, Wang; Administrative: L Jones, Wells, Lin, Wang, Alo, Williams, F Jones, Dickson, Han, Pardo, Norris, A Jones, Wright, Young, Rotter; Supervision: L Jones, Wells, F Jones, Dickson, Norris, Rotter
ISSN:1049-510X
1945-0826
DOI:10.18865/ed.28.s2.503