Abstract IA24: Building capacity and testing the impact of methods and variables for enhancing biospecimen donations with diverse communities
Authors: Erwin Deborah O. , Rodriguez Elisa Marie , Kiviniemi Marc 
Published: October 2015

Abstract
Background/Purpose: The disproportionately lower number of certain subpopulations participating in clinical and prevention research has a significant impact on the representativeness of scientific outcomes and result in social and clinical injustices1. A sequential set of studies were conducted to engage diverse medically underserved populations in biospecimen donation for cancer genomic research. Specifically, these studies developed and tested interventions to identify influential factors regarding research participation from racially diverse community members including African American, urban poor and Hispanic/Latino participants.
Methods: Phase 1: An 8-member team of community leaders helped to create a one-hour educational intervention to engage and inform local community members about a local biospecimen banking program and a T-reg cell assay study. Based on behavioral comparisons of Social Cognitive Theory (e.g., knowledge), Expected Utility (e.g. cost/benefits) and Affective Associations (e.g., fear, anxiety), a pre-post- intervention design was used to collect data on knowledge and perceptions about utility and affective responses to participation in research and biobanking.
Phase 2: The intervention was trans-created for use with Spanish-speaking community members, and a mobile laboratory van was incorporated for on-site phlebotomy and specimen processing.
Phase 3: Diverse participants from across the city were recruited to in-depth community-based educational programs or during open events (e.g., health fairs) in the community. The educational programs covered information on genomic research and the need for inclusion and representation from diverse populations in biospecimen donation based on Phase 1 outcomes. Educational programs implemented an Audience Response System (ARS) to collect demographics and test pre- and post-intervention intent to donate. An on-site mobile lab along with phlebotomy services was provided to collect participant blood samples to be stored at the cancer center's Databank and Biorepository (DBBR).
Results/Findings: Phase 1: A total of 167 community members participated in the educational program and 111(67%) donated blood/genetic samples and completed the 36-page lifestyle questionnaire. Forty-nine percent of the participants were African American. Over 90% of attendees chose to participate following the educational program when a phlebotomist was present to take blood samples. Participating in the educational program significantly reduced negative affect associated with research participation to collect genetic material or completing a long survey (p&lt; .01, &lt;.001, respectively). Both willingness to participate in studies and actual participation was primarily predicted by the feelings individuals associated with research, for both blood draw studies and questionnaire studies, those with more negative feelings about participation were less like to report willingness to take part in the study; questionnaire willingness B=-1.21, p&lt;.05; blood willingness B=-0.97, p&lt;.05. For blood draw studies, affective associations also predicted actual participation; B=-1.15, p&lt;.05.2,3
Phase 2: Six Key Informant interviews and four focus groups (n=22) with Latino community members demonstrated that the majority of participants were unfamiliar and confused about what the biospecimen donation process entails, and that there were significant language issues with the term “biospecimen” (e.g., espécimen biológico or muestra de saliva/sangre).4,5 Results included culturally appropriate strategies for presentation messages, methods and locations for program delivery.
Phase 3: A total of 370 community participants attended one of 24 programs (14 education/10 open events) that were conducted in the community from December 2012 through April 2014. Programs were offered in English or Spanish. The education programs included 264 participants, of whom African Americans represented 52.7% of the participants, 34.8% identified as Hispanic ethnicity, 3.8% identified as White (non-Hispanic), 2.7% selected Other or Mixed Race/Ethnicity, and 6% were Missing race/ethnicity. At pre-test, more than 60% of participants reported that the program was the first time they had heard of the biobank at the cancer center. Over 46% of participants reported they would donate to the biobank at post-test. A total of 93 (60.8%) participants provided a blood donation after participating in the education programs, and 60 (39.2%) participants donated blood at the open events. Of the African American and Hispanic participants that were engaged in the education programs, 33.8 % (n=47/139) and 39.1% (36/92) donated blood to the biobank, respectively.
Conclusions: Accurate information and improved knowledge can reduce individual anxiety and concerns that serve as barriers to research participation. The feelings individuals have about research participation played a central role in determining participation. The use of a community-based education/outreach program facilitated engagement of diverse community participants and provided them with information on an innovative opportunity to participate in cancer research through biospecimen donation at their local community location. The wider implications for these results for participation in various cancer center studies include: the ability to collaborate with WNY communities of color to enhance understanding and research participation; specifically, to diversify the data and specimens on which cancer studies are constructed; and the availability of a process template that can be tailored to more specific cancer research questions and technologies to include diverse and medically underserved populations.
1. Katz RV, Wang MQ, Green BL, et al. Participation in biomedical research studies and cancer screenings: perceptions of risks to minorities compared with whites. Cancer Control. Oct 2008;15(4):344-351.
2. Erwin DO, Moysich KB, Kiviniemi MT, Saad-Harfouche FG, Davis W, Clark-Hargrave N, Ciupak GL, Ambrosone CB, Walker C. Community-based Partnership to Identify Keys to Biospecimen Research Participation. Journal of Cancer Education, 2013; 28 (1); 43-51
3.Kiviniemi MT, Saad-Harfouche FG, Ciupak GL, Davis W, Moysich K, Clark-Hargrave N, Ambrosone CB, Walker C, Erwin DO. Pilot intervention outcomes of an educational program for biospecimen research participation. Journal of Cancer Education, 2013; 28 (1):52-59
4. Rodriguez EM, Torres ET, Erwin DO. Awareness and interest in biospecimen donation for cancer research. J Community Genet 2013, 4:461–468.
5. Dang JHT, Rodriguez EM, Luque JS, Erwin DO, Meade CD, Chen MS. Engaging diverse populations about biospecimen donation for cancer research. J Community Genet 2014, 5 (4): 313-327.
Citation Format: Deborah O. Erwin, Elisa Marie Rodriguez, Marc Kiviniemi. Building capacity and testing the impact of methods and variables for enhancing biospecimen donations with diverse communities. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr IA24.