title: Reported benefits of participation in a research study.
abstract: Racial and ethnic minorities are significantly underrepresented in clinical research trials. Several socio-cultural and systemic barriers, ranging from discrimination by the health care system, medical mistrust, to low physician referral rates and lack of knowledge of research studies have been identified as impacting participation. One hundred and fifteen participants were culturally matched and were interviewed followed by up to an additional four interviews over a 12 month period. Responses were analyzed to understand the perceived benefits to participating in a prospective, randomized, longitudinal clinical research trial about screening colonoscopy. Over two-thirds (64.4%) of participants reported "knowledge, awareness, and/or information about colonoscopy and general health" as being the greatest benefit they received. Desire to undergo the screening and the pride of completing the study was ranked second and third, respectively. Understanding the reasons that participants choose to participate in research studies will ultimately assist researchers close the gap in minority representation, allowing for greater generalizability of research findings.
authors.affiliation: Mount Sinai School of Medicine, New York, NY 10029, USA.
authors.forename: Anabella G
authors.initials: AG
authors.lastname: Castillo
authors.forename: Lina
authors.initials: L
authors.lastname: Jandorf
authors.forename: Linda D
authors.initials: LD
authors.lastname: Thélémaque
authors.forename: Sheba
authors.initials: S
authors.lastname: King
authors.forename: Katherine
authors.initials: K
authors.lastname: Duhamel
mesh_terms: D001741:Black or African American / Q000523:psychology* / Q000706:statistics & numerical data; D002755:Choice Behavior; D003113:Colonoscopy; D005260:Female; D005500:Follow-Up Studies; D007722:Health Knowledge, Attitudes, Practice / Q000208:ethnology*; D006801:Humans; D008297:Male; D008403:Mass Screening; D008875:Middle Aged; D008913:Minority Groups / Q000523:psychology* / Q000706:statistics & numerical data; D010358:Patient Participation / Q000523:psychology*; D036301:Qualitative Research; D016032:Randomized Controlled Trials as Topic; D014481:United States