Orange County Asian Pacific Islander Community Alliance

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.

Breast and cervical cancers are the second and fourth leading causes of cancer death among Asian and Pacific Islander women. Despite screening exams that can detect these cancers early and increase survival, racial and ethnic populations continue to be disproportionately affected. This study examined the sources of information and their impacts on cancer screening compliance among native Hawaiians in Orange County, California. A community-based participatory research approach was used to conceive, design, implement, and analyze data. A relatively small proportion of the study's native Hawaiian women were compliant with recommended breast and cervical cancer screenings, and their screening rates were below the national Healthy People 2010 standards. Knowledge of screening procedures, seeking advice from a doctor, and obtaining information from internet medical sites were associated with higher rates of compliance with cancer-screening procedures.