Expanding community engagement in HIV clinical trials: a pilot study using crowdsourcing.
Expanding community engagement in HIV clinical trials: a pilot study using crowdsourcing.
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DOI：
10.1097/qad.0000000000002534
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发表时间：
2020-07-01
期刊：
影响因子：
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通讯作者：
Tucker JD
中科院分区：
文献类型：
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作者：
Day S;Mathews A;Blumberg M;Vu T;Mason H;Rennie S;Kuruc JD;Gay CL;Margolis DM;Tucker JD
评估众包的潜力，以补充和扩展社区咨询委员会(CAB)对艾滋病毒临床试验的反馈。众包包括社区成员试图解决问题，然后分享解决方案。CAB和众包方法在第一阶段HIV抗体试验的背景下实施，以收集关于知情同意、参与经验和公平性的反馈。CAB参与是通过与HIV CAB的成员进行小组讨论进行的。众包包括旨在吸引当地社区参与的公开活动，包括互动视频模块、动画插曲和创意大赛。通过开放式编码和对突发主题的分析，比较CAB和众包反馈。众包活动涉及三个活动的61人；9人参与出租车反馈。与CAB参与者相比，众包参与者的教育水平和收入水平较低，残疾和失业水平较高。CAB和众包反馈的重叠之处包括加强沟通的建议和对试验参与者的额外支持。众包就积极经验和社会经济因素对审判参与的影响提供了更详细的反馈。CAB的反馈包括更多地强调机构规章和调整审判程序。众包反馈强调了解试验的替代方法和对参与试验的潜在风险的关注。除了CAB参与之外，进行众包还可以产生更广泛的利益相关者反馈，为艾滋病毒临床试验的设计和实施提供信息。
To assess the potential for crowdsourcing to complement and extend community advisory board (CAB) feedback on HIV clinical trials. Crowdsourcing involves community members attempting to solve a problem and then sharing solutions. CAB and crowdsourced approaches were implemented in the context of a phase 1 HIV antibody trial to collect feedback on informed consent, participation experiences, and fairness. CAB engagement was conducted through group discussions with members of an HIV CAB. Crowdsourcing involved open events intended to engage the local community, including interactive video modules, animated vignettes, and a creative idea contest. Open coding and analysis of emergent themes were conducted to compare CAB and crowdsourced feedback. The crowdsourcing activities engaged 61 people across the three events; 9 people engaged in CAB feedback. Compared to CAB participants, crowdsourcing participants had lower levels of education and income, and higher levels of disability and unemployment. Overlap in CAB and crowdsourced feedback included recommendations for enhancing communication and additional support for trial participants. Crowdsourcing provided more detailed feedback on the impact of positive experiences and socio-economic factors on trial participation. CAB feedback included greater emphasis on institutional regulations and tailoring trial procedures. Crowdsourced feedback emphasized alternative methods for learning about trials and concerns with potential risks of trial participation. Conducting crowdsourcing in addition to CAB engagement can yield a broader range of stakeholder feedback to inform the design and conduct of HIV clinical trials.