Abstract A29: Developing biospecimen and clinical research education materials for ethnic minorities and younger survivors.
Authors: Yeung Sophia , Serrano Mayra , Ashing-Giwa Kimlin 
Published: August 2014

Abstract
Biospecimen (BB) and clinical trials (CT) research form the core of biomedical discoveries and advancements in diagnosing, preventing, and treating diseases. We conducted a multi-pronged formative data gathering strategy to inform the development of BB and CT education material focusing on ethnic minorities and younger survivors. Our approach is based on the community participatory framework and the theoretical foundation is the socio-ecological contextual model to examine, assess, understand and address cancer disparities. Our community advisory council recommended a multi method formative data gathering that included key informant (8 community health leaders) and in-depth advocate or survivor interviews with African-, Chinese- and Latino-American participants (n=33), and incorporated data from a national survey. These participants revealed that clinical research acceptability among ethnic minorities is high, yet access to information and resources on clinical research relevant to ethnic minorities is inadequate. Preliminary findings underscored the importance of clear, concise and in-language educational materials. Our participants noted that educational presentations are most effective when conducted by a team comprising community health leaders (CHL) and scientific and medical experts.
Additional data gathering was conducted in collaboration with Living Beyond Breast Cancer in a nation-wide sample of 1500 breast cancer survivors to assess their interest in and attainment of CT materials and resources. Participants were aged 21 to 63, &lt;45 yrs at diagnoses, 61% were 0-5 yrs post diagnosis, and 76% endorsed interest in CT. CT interest was also high for ethnic minority respondents (Latina=76%, African-American=79%, and Asian-American=86%). Although respondents showed great interest, only 39% of respondents attained any CT information; and ethnic minority respondents reported similarly low access rates (38% Asian- and African-American and 33% Latinas). This high interest-low accession outcome was validated by our local formative interviews.
Given that studies demonstrate an association between lack of information and low participation in clinical research, and that our informative and survey participants endorsed interest but rarely attained CT information, we formulated a multi-level strategy to increase underrepresented population in clinical research: 1) We used our local data and existing literature to develop brief, in-language BB and CT educational and resource fliers for Chinese-, African- and Latino-Americans. We conducted preliminary evaluative reviews with City of Hope scientists and providers, community providers and breast cancer survivors and advocates. Our educational documents were finalized based on the preliminary reviews; 2) An annual Community Education and Awareness forum was designed to showcase medical advancements delivered by scientists and providers, and feature a panel comprising CHL and survivors sharing their experiences with CT and BB; and 3) Our 3rd strategy will implement i) primary and oncology provider disseminated patient education, and ii) patient activation via a multi media campaign about a patients' right to ask about clinical research including CT and BB. We believe that this multi-level intervention that targets all stakeholders can make improvements in minority representation in clinical research at the local level, and may produce solutions with national applicability.
Citation Format: Sophia Yeung, Mayra Serrano, Kimlin Ashing-Giwa. Developing biospecimen and clinical research education materials for ethnic minorities and younger survivors. [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 A29.