Table 1.

Application of CBPR Process in Tool Development

CBPR Processes	WNYC2	TBCCN
Community engagement and collaboration	• Series of formative studies to discover needs of community members • Biobanking presentation and tour of biobanking facilities at cancer center • Key community stakeholders engaged • Individual community members & small groups asked to convene to discuss & review ideas • Community representatives review & debrief with pilot tools	• Discussion of cancer innovations/new technologies at Community Partner Quarterly Meeting • Biobanking presentation and tour of biobanking facilities at cancer center • Formation of an ethnically diverse and bilingual Biobanking Community Advisory Board (BCAB) that met regularly throughout development process
Use of iterative planning steps	• Formative research consisting of 7 focus groups and 15 Key Informant Interviews with community members (in English and Spanish) • Draft ideas with community members and finalize through iterative revisions of tool • Step 1: Development of draft content on use of biospecimens in cancer research, donation process, and consent process • Step 2: Review draft presentation with community partner groups, and obtain feedback • Step 3: Revise tool according to suggestions from the community partners • Step 4: Pilot revised tool during community stakeholder forum • Step 5: Testing of final drafts in the community	• Formative research consisted of conduct of 12 focus groups14 with community members (in English and Spanish language) • Learner-centered processes utilized in concept testing and iterative revisions of tools • Three rounds of learner verifications were conducted (n=65)     • Learner verification step 1: Development of a storyboard, brochure content map, and steps involved in biobanking process     • Learner verification step 2: Testing of initial drafts of tools     • Learner verification step 3: Testing of final drafts • Revisions to tools were made after each iterative round
Conduct and analysis of formative research	• Development of conceptual tool and test willingness to donate biospecimens3,11,15	• Development of a creative brief using findings from formative data14 & BCAB members • Considerations about intended audience and content
Attention to culture and literacy	• Translate version of tools & forms into Spanish • Include local community members in photos used within tool • Include local research projects in tool as examples • Use simple language and give examples • Use of Audience Response System (ARS) to engage community audience in the presentation and facilitate survey process • Community members serve as sources for presentation sites and advise about how presentation is organized	• BCAB members provided feedback on language and cultural appropriateness of content in tools • Include community members in the tools (testimonials, photos) • As English language tools were developed, language considerations were taken for future translation in Spanish (i.e., use of simple terms, development of a glossary of English to Spanish terms, etc.) • Research team worked closely with the director of tissue core operations to simplify scientific terminology, and these terms were later tested in learning verifications iterations with community members
Evaluation and refinement procedures	• Embedded survey questions • Revisions following multiple pilot programs • Spanish language translation and verification • Collection of number & type of participants at programs • Collection of number & type of participants in DataBase & BioRepository (DBBR) • Efficacy of community pilot including implementation of education tool using ARS in conjunction with mobile research lab (in process)	• Learner verifications were conducted with diverse community members, including Spanish-speakers from various Latin American countries to test terminology variations in Spanish dialects. • Interviews tested understanding of key terms, steps involved in biobanking, and overall understanding and acceptability of tools • Pilot RCTs to evaluate the utility of the educational tools and changes in knowledge, attitudes, and intentions to donate (in process)
Identification of public dissemination outlets	• Black & Hispanic newspapers • Radio	• Peer and community dissemination • Community events/conferences • Biobanking tours