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. Author manuscript; available in PMC: 2021 Jun 17.
Published in final edited form as: AIDS. 2020 Jul 1;34(8):1195–1204. doi: 10.1097/QAD.0000000000002534

Table 1:

Summary of methods used for CAB and crowdsourcing engagement

Engagement Topics CAB Engagement Activities Crowdsourcing Engagement Activities
Activity 1: Feedback on VOR-07 informed consent

  • CAB members provided with a copy of the VOR-07 clinical trial’s informed consent form, followed by a one-hour group discussion at a regular CAB meeting.

  • Discussion guided by an interviewer using open-ended questions on the clarity and completeness of the consent form.

  • Discussion was audio recorded and transcribed verbatim; field notes were also recorded.

  • VOR-07 informed consent form transformed into a series of interactive, animated, plain-language video modules, created by Community Expert Solutions (CES), a company specializing in community-sourced ideas for solving health problems.[32]

  • Held an open community event where members of the general community (anyone 18+) were invited to view the modules and participate in a group discussion guided by an interviewer using the same questions posed to the CAB.

  • Discussion (approximately 1 hour) was audio recorded and transcribed verbatim; field notes were also recorded and a demographic survey was administered.

  • Incentives provided: $15 gift cards and refreshments.
Activity 2: Feedback on participation in the VOR-07 trial

  • CAB members provided with three short vignettes describing fictional characters’ experiences with signing up, continuing in, and completing the VOR-07 trial.

  • Held a one-hour group discussion at a regular CAB meeting using open-ended questions about the vignette characters’ experiences, prompting CAB members to imagine what it might be like to participate in the VOR-07 trial and potential barriers/facilitators to trial participation.

  • Discussion was audio recorded and transcribed verbatim; field notes were also recorded.

  • Vignettes transformed into three narrated animations by CES.

  • Held an open community event where members of the general community (anyone 18+) were invited to view the animations and participate in a group discussion guided by an interviewer using the same questions posed to the CAB.

  • Discussion (approximately 1.5 hours) was audio recorded and transcribed verbatim; field notes were also recorded and a demographic survey was administered.

  • Incentives provided: $15 gift cards and refreshments.
Activity 3: Ideas for how to enhance fairness and reciprocity in the VOR-07 trial

  • Held a one-hour group discussion at a regular CAB meeting, guided by open-ended questions on the topic of how clinical trial researchers can ‘give back’ to the community.

  • Discussion was audio recorded and transcribed verbatim; field notes were also recorded.

  • Demographic survey data collected from participants.

  • Hosted an idea contest: a form of crowdsourcing that involves an open call for submissions in response to a challenge or prompt, evaluation of submissions, and celebration and sharing of the winning ideas.[17, 33] Questions asked in discussion with CAB were used as contest prompts.

  • Participants submitted ideas in response to contest prompts at an in-person community event, as well as via an online submission form hosted on our research group’s website (http://searchiv.web.unc.edu/). Ideas were submitted in text-based format. Informed consent emphasized that all submitted ideas would be part of a research study. Participants indicated whether they wished for their submission to be considered eligible for the contest (optional; required providing a name and either phone number or email), or wished only to have their submission included in the study (i.e. without consideration in the contest).

  • Participants submitted brief demographic information with each submission (gender, race/ethnicity, and confirmation of age 18 years or older).

  • Eligible contest submissions were assessed by a panel of experts in HIV research and community engagement, with finalists’ ideas publically celebrated and awarded gift cards of $200, $100, and $50 for 1st, 2nd and 3rd place respectively.