TY - JOUR
T1 - Community partnership in precision medicine
T2 - Themes from a community engagement conference
AU - Jones, Loretta
AU - Wells, Kenneth B.
AU - Lin, Henry J.
AU - Wang, Christina
AU - Alo, Audrey Kawaiopua
AU - Williams, Pluscedia
AU - Jones, Felica
AU - Dickson, Patricia I.
AU - Han, Sophia
AU - Pardo, Dominga
AU - Norris, Keith
AU - Jones, Andrea
AU - Wright, Aziza Lucas
AU - Young, Kawen
AU - Rotter, Jerome I.
N1 - Funding Information:
This work was supported by the UCLA- CTSI grant (UL1TR001881) and the Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, NIH Grants (UL1TR000124) and (P30AG021684), NIH-NIMHD grant (U54 MD007598), and CPPRN PCORI (PPRN-1501-26518).
Funding Information:
This work was supported by the UCLA-CTSI grant (UL1TR001881) and the Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, NIH Grants (UL1TR000124) and (P30AG021684), NIH-NIMHD grant (U54 MD007598), and CPPRN PCORI (PPRN-1501-26518).
Publisher Copyright:
© 2018 ISHIB. All rights reserved.
PY - 2018/9
Y1 - 2018/9
N2 - 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.
AB - 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.
KW - Community engagement
KW - Partnered research
KW - Precision medicine
KW - Research ethics
KW - Under-resourced communities
UR - http://www.scopus.com/inward/record.url?scp=85053382652&partnerID=8YFLogxK
U2 - 10.18865/ed.28.S2.503
DO - 10.18865/ed.28.S2.503
M3 - Article
C2 - 30202204
AN - SCOPUS:85053382652
VL - 28
SP - 503
EP - 510
JO - Ethnicity and Disease
JF - Ethnicity and Disease
SN - 1049-510X
ER -