title: The Development of a Communication Tool to Facilitate the Cancer Trial Recruitment Process and Increase Research Literacy among Underrepresented Populations.
abstract: Despite increasing need to boost the recruitment of underrepresented populations into cancer trials and biobanking research, few tools exist for facilitating dialogue between researchers and potential research participants during the recruitment process. In this paper, we describe the initial processes of a user-centered design cycle to develop a standardized research communication tool prototype for enhancing research literacy among individuals from underrepresented populations considering enrollment in cancer research and biobanking studies. We present qualitative feedback and recommendations on the prototype's design and content from potential end users: five clinical trial recruiters and ten potential research participants recruited from an academic medical center. Participants were given the prototype (a set of laminated cards) and were asked to provide feedback about the tool's content, design elements, and word choices during semi-structured, in-person interviews. Results suggest that the prototype was well received by recruiters and patients alike. They favored the simplicity, lay language, and layout of the cards. They also noted areas for improvement, leading to card refinements that included the following: addressing additional topic areas, clarifying research processes, increasing the number of diverse images, and using alternative word choices. Our process for refining user interfaces and iterating content in early phases of design may inform future efforts to develop tools for use in clinical research or biobanking studies to increase research literacy.
authors.affiliation: Department of Obstetrics and Gynecology, Northwestern University Feinberg School of Medicine, 633 N. St Clair, Suite 1800, Chicago, IL, 60611, USA.
authors.forename: Samantha
authors.initials: S
authors.lastname: Torres
authors.affiliation: Department of Obstetrics and Gynecology, Northwestern University Feinberg School of Medicine, 633 N. St Clair, Suite 1800, Chicago, IL, 60611, USA.
authors.forename: Erika E
authors.initials: EE
authors.lastname: de la Riva
authors.affiliation: Institute for Public Health and Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
authors.forename: Laura S
authors.initials: LS
authors.lastname: Tom
authors.affiliation: Health and Social Development Program, American Institutes for Research, Chicago, IL, USA.
authors.forename: Marla L
authors.initials: ML
authors.lastname: Clayman
authors.affiliation: Las Vegas Minimally Invasive Surgery, Women's Pelvic Health Center, Las Vegas, NV, USA.
authors.forename: Chirisse
authors.initials: C
authors.lastname: Taylor
authors.affiliation: Department of Medicine, Rush University Medical Center, Chicago, IL, USA.
authors.forename: Xinqi
authors.initials: X
authors.lastname: Dong
authors.affiliation: Department of Obstetrics and Gynecology, Robert H. Lurie Comprehensive Cancer Center and Northwestern University Feinberg School of Medicine, 633 N. St. Clair, Suite 1800, Chicago, IL, 60611, USA. m-simon2@northwestern.edu.
authors.forename: Melissa A
authors.initials: MA
authors.lastname: Simon
mesh_terms: D000293:Adolescent; D000328:Adult; D018070:Biological Specimen Banks; D035843:Biomedical Research; D002986:Clinical Trials as Topic; D003142:Communication; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D000067010:Literacy; D008297:Male; D008875:Middle Aged; D008913:Minority Groups; D009369:Neoplasms / Q000188:drug therapy* / Q000473:pathology; D018579:Patient Selection; D055815:Young Adult
keywords: Biobanking; Cancer research; Clinical trials; Minority and underrepresented populations; Patient communication; Research literacy
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