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.

Improving Informed Consent for Novel Vaccine Research in a Pediatric Hospital Setting Using a Blended Research-Design Approach

“…Other studies have explored the adoption of participatory methods for developing informed consent. Recently, a crowdsourcing approach was used to highlight the limits of the informed consent used for HIV clinical trials and propose alternative formats, through workshops that, however, were not based on design thinking ( 42 ).…”

How to make your research jump off the page: Co-creation to broaden public engagement in medical research

“…Two excellent tools for public engagement are infographics and videos [ 6 , 24 ]. These complementary tools are commonly accepted at major medical journals and may be useful for engaging public audiences.…”

“…Videos have the advantage of reaching some audiences who may not read medical research journals, including individuals for whom English is a second language and those who face socioeconomic barriers [ 6 , 31 , 32 ]. Short videos co-created with the public suggest new ways to empower groups that are underrepresented in research [ 24 , 31 , 33 ].…”

“…For laypeople, engagement provides an opportunity to contribute to and learn about processes that affect their health. It gives patients more voice [ 6 ] and power [ 4 ] and holds researchers accountable to funders and beneficiaries. When done well, public engagement builds trust between researchers and the public.…”

Assessment of a Crowdsourcing Open Call for Approaches to University Community Engagement and Strategic Planning During COVID-19

“…8 Randomized clinical trials have demonstrated the effectiveness of crowdsourcing across an array of health topics, 9 and social science research has shown that open calls can enhance community engagement through the meaningful participation of a broad range of local stakeholders. 10 , 11 For example, a crowdsourcing open call on the topic of HIV cure research resulted in creative contributions from local stakeholders and the development of messaging around HIV cure research that was both culturally appropriate and resonated with communities that are disproportionately impacted by HIV. 12 In addition, compared with other community engagement mechanisms (eg, community advisory boards), crowdsourcing open calls have been found to engage a broader range of stakeholders whose perspectives are often underrepresented in health and medical research, including individuals with lower levels of education and lower incomes.…”