An analysis of factors influencing dementia study enrollment: Focus groups with diverse community members viewing the ACTNOW research registry website

Abstract

AbstractBackgroundMany barriers discourage individuals from enrolling in dementia research studies, such as lack of information, web accessibility, and transportation. Research stakeholder feedback is necessary to understand these barriers. We used virtual focus groups to learn how to improve the website of our local research registry: ACTNOW (Alzheimer’s Comprehensive Treatment Network of Oregon and Washington). Local community members from diverse backgrounds interacted with the study team to provide insight on some of the roadblocks to research participation. Here, we report on findings from the focus groups and participants’ feedback related to the ACTNOW website and user engagement.MethodThree 90‐minute virtual focus groups (fg) were conducted with 19 participants via videoconferencing. Inclusion criteria were ACTNOW members, African American, and low‐income and rural‐dwelling individuals combined respectively. Participants completed pre‐and post‐focus group surveys about their thoughts on the ACTNOW website and interest in dementia research. Investigators from the research team analyzed the survey data and independently coded the written transcripts from the group discussions using the Dedoose coding software.ResultThere were 19 participants overall (fg_1 = 8, fg_2 = 5, fg_3 = 6). The mean age was 66.9; 89.5% of the sample was female; and 57.9% were white. The analysis revealed that the participants had concerns about the readability of the website and the clarity of purpose of ACTNOW (e.g., “I look at this, and I say, whoa, wait a minute they want me to sign up for what?”). Most of the topics discussed suggested consumers did not understand the purpose of the website or ACTNOW’s promotional materials, resulting in a fear of signing up for the actual program (research registry). Survey data reported a large interest in dementia research but a need for more consumable, relevant information, such as explaining the benefits of research and requirements of being an ACTNOW member.ConclusionFindings demonstrate specific website usability challenges and reasons that prevent community members from signing up for dementia research. Understanding the focus group participants’ feedback is important in fostering greater diversity, appeal, and accessibility in dementia research.