Loretta Jones1,2, Kenneth Wells3, Henry J Lin4, Christina Wang5, Audrey Kawaiopua Alo6, Pluscedia Williams1,2,5, Felica Jones1, Patricia I Dickson5, Sophia Han5, Dominga Pardo7, Keith Norris8, Andrea Jones1,2, Aziza Wright1,2,9, Kawen Young10, Jerome I Rotter4. 1. Healthy African American Families Phase II, Los Angeles, CA. 2. Charles R. Drew University of Medicine and Science, Los Angeles, CA. 3. Department of Psychiatry and Biobehavioral Sciences, David Geffen School of Medicine, Semel Institute, Department of Health Policy and Management, Fielding School of Public Health, RAND Health Program, Los Angeles, CA. 4. Institute for Translational Genomics and Population Sciences, Los Angeles Biomedical Research Institute, Harbor-UCLA Medical Center, Torrance, CA. 5. Clinical and Translational Science Institute, Los Angeles Biomedical Research Institute/ Harbor-UCLA Medical Center, Torrance, CA. 6. Pacific Islander Health Partnership, Director, UCLA Clinical and Translational Institute, External Advisory Committee, Patient Advocate, Los Angeles, CA. 7. Robert F. Kennedy Institute, Wilmington, CA. 8. David Geffen School of Medicine at UCLA, Los Angeles, CA. 9. The RAND Corporation, Los Angeles, CA. 10. Native Hawaiian and Pacific Islander Alliance, Gardena, CA.
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.
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.
Entities:
Keywords:
Community Engagement; Partnered Research; Precision Medicine; Research Ethics; Under-resourced Communities
Authors: Bowen Chung; Michael Ong; Susan L Ettner; Felica Jones; James Gilmore; Michael McCreary; Cathy Sherbourne; Victoria Ngo; Paul Koegel; Lingqi Tang; Elizabeth Dixon; Jeanne Miranda; Thomas R Belin; Kenneth B Wells Journal: Ann Intern Med Date: 2014-11-18 Impact factor: 25.391
Authors: Benjamin F Springgate; Ashley Wennerstrom; Diana Meyers; Charles E Allen; Steven D Vannoy; Wayne Bentham; Kenneth B Wells Journal: Ethn Dis Date: 2011 Impact factor: 1.847
Authors: Kenneth B Wells; Loretta Jones; Bowen Chung; Elizabeth L Dixon; Lingqi Tang; Jim Gilmore; Cathy Sherbourne; Victoria K Ngo; Michael K Ong; Susan Stockdale; Esmeralda Ramos; Thomas R Belin; Jeanne Miranda Journal: J Gen Intern Med Date: 2013-05-07 Impact factor: 5.128