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Broadening community engagement in clinical research: Designing and assessing a pilot crowdsourcing project to obtain community feedback on an HIV clinical trial.

ABSTRACT: BACKGROUND/AIMS:Community engagement is widely acknowledged as an important step in clinical trials. One underexplored method for engagement in clinical trials is crowdsourcing. Crowdsourcing involves having community members attempt to solve a problem and then publicly sharing innovative solutions. We designed and conducted a pilot using a crowdsourcing approach to obtain community feedback on an HIV clinical trial, called the Acceptability of Combined Community Engagement Strategies Study. In this work, we describe and assess the Acceptability of Combined Community Engagement Strategies Study's crowdsourcing activities in order to examine the opportunities of crowdsourcing as a clinical trial community engagement strategy. METHODS:The crowdsourcing engagement activities involved in the Acceptability of Combined Community Engagement Strategies Study were conducted in the context of a phase 1 HIV antibody trial (ClinicalTrials.gov identifier: NCT03803605). We designed a series of crowdsourcing activities to collect feedback on three aspects of this clinical trial: the informed consent process, the experience of participating in the trial, and fairness/reciprocity in HIV clinical trials. All crowdsourcing activities were open to members of the general public 18 years of age or older, and participation was solicited from the local community. A group discussion was held with representatives of the clinical trial team to obtain feedback on the utility of crowdsourcing as a community engagement strategy for informing future clinical trials. RESULTS:Crowdsourcing activities made use of innovative tools and a combination of in-person and online participation opportunities to engage community members in the clinical trial feedback process. Community feedback on informed consent was collected by transforming the clinical trial's informed consent form into a series of interactive video modules, which were screened at an open public discussion. Feedback on the experience of trial participation involved designing three fictional vignettes which were then transformed into animated videos and screened at an open public discussion. Finally, feedback on fairness/reciprocity in HIV clinical trials was collected using a crowdsourcing idea contest with online and in-person submission opportunities. Our public discussion events were attended by 38 participants in total; our idea contest received 43 submissions (27 in-person, 16 online). Facebook and Twitter metrics demonstrated substantial engagement in the project. The clinical team found crowdsourcing primarily useful for enhancing informed consent and trial recruitment. CONCLUSION:There is sufficient lay community interest in open calls for feedback on the design and conduct of clinical trials, making crowdsourcing both a novel and feasible engagement strategy. Clinical trial researchers are encouraged to consider the opportunities of implementing crowdsourcing to inform trial processes from a community perspective.

SUBMITTER: Day S

PROVIDER: S-EPMC7255944 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature

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Broadening community engagement in clinical research: Designing and assessing a pilot crowdsourcing project to obtain community feedback on an HIV clinical trial.

Day Suzanne S Mathews Allison A Blumberg Meredith M Vu Thi T Rennie Stuart S Tucker Joseph D JD

Clinical trials (London, England) 20200203 3

<h4>Background/aims</h4>Community engagement is widely acknowledged as an important step in clinical trials. One underexplored method for engagement in clinical trials is crowdsourcing. Crowdsourcing involves having community members attempt to solve a problem and then publicly sharing innovative solutions. We designed and conducted a pilot using a crowdsourcing approach to obtain community feedback on an HIV clinical trial, called the Acceptability of Combined Community Engagement Strategies St ...[more]

PMID: 32009466

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Project description:ImportanceReimagining university life during COVID-19 requires substantial innovation and meaningful community input. One method for obtaining community input is crowdsourcing, which involves having a group of individuals work to solve a problem and then publicly share solutions.ObjectiveTo evaluate a crowdsourcing open call as an approach to COVID-19 university community engagement and strategic planning.Design, setting, and participantsThis qualitative study assessed a crowdsourcing open call offered from June 16 to July 16, 2020, that sought ideas to inform safety in the fall 2020 semester at the University of North Carolina at Chapel Hill (UNC). Digital methods (email and social media) were used for promotion, and submissions were collected online for 4 weeks. Participation was open to UNC students, staff, faculty, and others.Main outcomes and measuresSubmissions were evaluated for innovation, feasibility, inclusivity, and potential to improve safety and well-being. Demographic data were collected from submitting individuals, and submissions were qualitatively analyzed for emergent themes on challenges with and solutions for addressing safety and well-being in the fall semester. Data were shared with UNC leadership to inform decision-making.ResultsThe open call received 82 submissions from 110 participants, including current UNC students (56 submissions [68%]), people younger than 30 years (67 [82%]), women (55 [67%]), and individuals identifying as a racial/ethnic minority or as multiracial/ethnic (49 [60%]). Seven submissions were identified as finalists and received cash prizes with the encouragement to use these funds toward idea development and implementation. Seventeen runner-up teams were linked to university resources for further development. Thematic analysis of submissions regarding challenges with the fall semester revealed not only physical health concerns and the limitations of remote learning but also challenges that have been exacerbated by the pandemic, such as a lack of mental health support, structural racism and inequality, and insufficient public transportation. Solutions included novel ideas to support mental health among specific populations (eg, graduate students and racial/ethnic minorities), improve health equity, and increase transit access. All 24 finalists and runners-up indicated interest in implementation after being notified of the open call results.Conclusions and relevanceThis study suggests that open calls are a feasible strategy for university community engagement on COVID-19, providing a stakeholder-driven approach to identifying promising ideas for enhancing safety and well-being. Open calls could be formally incorporated into university planning processes to develop COVID-19 safety strategies that are responsive to diverse community members' concerns.

Project description:IntroductionIn recent years, there has been increasing awareness of the lack of diversity among clinical trial participants. Equitable representation is key when testing novel therapeutic and non-therapeutic interventions to ensure safety and efficacy across populations. Unfortunately, in the United States (US), racial and ethnic minority populations continue to be underrepresented in clinical trials compared to their White counterparts.MethodsTwo webinars in a four-part series, titled "Health Equity through Diversity," were held to discuss solutions for advancing health equity through diversifying clinical trials and addressing medical mistrust in communities. Each webinar was 1.5 hours long, beginning with panelist discussions followed by breakout rooms where moderators led discussions related to health equity and scribes recorded each room's conversations. The diverse groups of panelists included community members, civic representatives, clinician-scientists, and biopharmaceutical representatives. Scribe notes from discussions were collected and thematically analyzed to uncover the central themes.ResultsThe first two webinars were attended by 242 and 205 individuals, respectively. The attendees represented 25 US states, four countries outside the US, and shared various backgrounds including community members, clinician/researchers, government organizations, biotechnology/biopharmaceutical professionals, and others. Barriers to clinical trial participation are broadly grouped into the themes of access, awareness, discrimination and racism, and workforce diversity. Participants noted that innovative, community-engaged, co-designed solutions are essential.ConclusionsDespite racial and ethnic minority groups making up nearly half of the US population, underrepresentation in clinical trials remains a critical challenge. The community engaged co-developed solutions detailed in this report to address access, awareness, discrimination and racism, and workforce diversity are critical to advancing clinical trial diversity.

Dataset Information

Broadening community engagement in clinical research: Designing and assessing a pilot crowdsourcing project to obtain community feedback on an HIV clinical trial.

Publications

Broadening community engagement in clinical research: Designing and assessing a pilot crowdsourcing project to obtain community feedback on an HIV clinical trial.

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