Abstract ED03-03: Translating research into practice: Results of the WINCART Center Biospecimen Pilot Study and community outreach efforts.
Authors: Kwan Patchareeya P. , Briand Greta , Lee Cevadne , Lepule Jonathan Tana , Pang Jane Ka'ala , Sabado Melanie , Santos Lola Sablan , Tui'one Vanessa , Vaivao Dorothy Etimani S. , Tanjasiri Sora P. , Palmer Paula H. 
Published: August 2014

Abstract
Study Objectives: The purpose of this community-based participatory research (CBPR) pilot project is to investigate the knowledge, attitudes, and beliefs that Pacific Islanders (PI) hold towards biospecimen collection, use, and banking all of which can aid in medical diagnosis and basic research. This project is a component of the National Institutes of Health/National Cancer Institute (NIH/NCI)-funded U54 Center “Weaving an Islander Network for Cancer Awareness, Research and Training” (WINCART) which focuses on research, education and community capacity building, all contributing to the reduction of cancer health disparities among PI communities in Southern California. PIs are the focus of this research because of their under-representation in medical and behavioral research despite disproportionately high rates of certain cancers (cervical, breast, lung, etc.). Findings from the few studies that have addressed biospecimen collection and research among Native Hawaiians in Hawaii and Maori in New Zealand have revealed general distrust among native peoples across the spectrum of biospecimen research, including informed consent procedures, specimen storage and use, genetic research, methods of dissemination of findings and potential benefits to the community. Study Methods: A total of 60 adults (50% cancer survivors) from PI ethnic groups - Marshallese, Native Hawaiian, Samoan, Chamorro, Tongan, etc. completed a paper-and-pencil questionnaire plus a semi-structured one-on-one interview with trained community partners. Community leaders from PI communities in addition to the Claremont Graduate University (CGU) academic/research staff made up the research team. Together the team is involved in all phases of the study, namely, identifying measurement constructs, developing questionnaire and interview items, recruiting study participants, and collecting and interpreting data. Prior to data collection, a recruitment flier that detailed the nature of the pilot project, procedures and contact information were distributed at cultural events such as the PI festivals and health fairs plus other social events at the community based organizations and churches. Recruitment of participants also took place in the form of personal social networks within PI communities which seems to be a strong predictor of participation. Once eligible, community partners took the lead on scheduling the interviews with each participant, administering the surveys, conducting the interviews and transcribing and translating each individual interview. Qualitative data analysis was conducted by the academic research team using the program ATLAS. All quantitative data analysis was conducted using STATA. Study Results: Content analysis of the interview transcripts indicated support for beneficial biospecimen research among the PI community. Most of the participants have had satisfactory experience with providing biospecimens for their own health diagnosis and understand the importance of biospecimen and genetic research. When asked to make suggestions as to how researchers can make biospecimen and genetic research more relevant and appealing to them, two main suggestions were made; (1) provide detailed information about each study being conducted to the community and participants and (2) conduct education and outreach among the community to increase knowledge about the importance of research and build trust among the community and researchers. Community Outreach: As a result of the suggestions made by the PI participants in this study, pilot project staff along with the WINCART community outreach core have conducted several community outreach and education events that specifically addressed biospecimen research. One notable outreach was an educational presentation which took place at a cancer survivors event titled “Cancer, Cultures and Pacific Islanders” held on April 28, 2012 in Costa Mesa, California. The event was sponsored by Pacific Islander Health Partnership, the Susan G. Komen for the Cure, Orange County Affiliate, PATH “Promoting Access To Health” and WINCART. Approximately 75-100 cancer survivors, family members and friends attended the event. The presentation focused mainly on two things - (1) general introduction to biospecimen research and (2) preliminary results of the WINCART Biospecimen pilot study. A 4-item post presentation evaluation was administered to everyone who attended the event. A total of 34 completed surveys were returned with overall good results. Over 90% of the participants responded correctly to the question “What is a biospecimen?” and “What is informed consent?” All participants were able to answer the question “How can the study of your samples benefit the Pacific Islander community?” correctly. The last question which asked “After listening to the presentation, how do you feel about participating in a biospecimen related research study?” had mixed results with 47% saying they will participant, 18% with not sure, 6% with a definite no and the remaining either saying don't know or did not provide a response. Other education and outreach events include the “Pacific Islander Youth Health and Fitness Day” which was held on May 19, 2012 in Los Angeles, California at the University of California Los Angeles campus. Research staff provided brochures titled “Pacific Islanders: Advancing Cancer Treatment” and discussed the brochure with PIs who attended the event and visited the WINCART booth. Other outreach and education events include the Pacific Island Festival in Orange County and San Diego County during the month of September 2012. Conclusion: The education and outreach events mentioned above served three main purposes; (1) educate community members about biospecimen research, (2) disseminate results of the pilot study to community members and study participants and (3) community outreach by research and academic staff and thus establishing the researchers' presence in the greater PI community. Thus far, the community has been very receptive to the biospecimen outreach and education efforts. Continued work is still needed to build trust and mutual vested interest in biospecimen research which will one day reduce cancer health disparities in this population.
Citation Format: Patchareeya P. Kwan, Greta Briand, Cevadne Lee, Jonathan Tana Lepule, Jane Ka'ala Pang, Melanie Sabado, Lola Sablan Santos, Vanessa Tui'one, Dorothy Etimani S. Vaivao, Sora P. Tanjasiri, Paula H. Palmer. Translating research into practice: Results of the WINCART Center Biospecimen Pilot Study and community outreach efforts. [abstract]. In: Proceedings of the Fifth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2012 Oct 27-30; San Diego, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2012;21(10 Suppl):Abstract nr ED03-03.