Suzanne Day1, Allison Mathews1, Meredith Blumberg1,2, Thi Vu1, Hailey Mason1, Stuart Rennie2,3, JoAnne D Kuruc4,5, Cynthia L Gay4,5, David M Margolis4,5,6,7, Joseph D Tucker1,4,8. 1. Institute for Global Health and Infectious Diseases. 2. Department of Social Medicine. 3. Center for Bioethics. 4. Department of Medicine. 5. UNC HIV Cure Center. 6. Department of Microbiology and Immunology. 7. Department of Epidemiology, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA. 8. Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, UK.
Abstract
OBJECTIVE: 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. METHODS: 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. RESULTS: The crowdsourcing activities engaged 61 people across three events; nine people engaged in CAB feedback. Compared with 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. CONCLUSION: 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. VIDEO ABSTRACT:.
OBJECTIVE: 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. METHODS: 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. RESULTS: The crowdsourcing activities engaged 61 people across three events; nine people engaged in CAB feedback. Compared with 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. CONCLUSION: 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. VIDEO ABSTRACT:.
Authors: Jose R Castillo-Mancilla; Susan E Cohn; Supriya Krishnan; Michelle Cespedes; Michelle Floris-Moore; Gail Schulte; Gregory Pavlov; Donna Mildvan; Kimberly Y Smith Journal: HIV Clin Trials Date: 2014 Jan-Feb
Authors: Peter A Newman; Clara Rubincam; Catherine Slack; Zaynab Essack; Venkatesan Chakrapani; Deng-Min Chuang; Suchon Tepjan; Murali Shunmugam; Surachet Roungprakhon; Carmen Logie; Jennifer Koen; Graham Lindegger Journal: PLoS One Date: 2015-08-21 Impact factor: 3.240
Authors: Weiming Tang; Chongyi Wei; Bolin Cao; Dan Wu; Katherine T Li; Haidong Lu; Wei Ma; Dianmin Kang; Haochu Li; Meizhen Liao; Katie R Mollan; Michael G Hudgens; Chuncheng Liu; Wenting Huang; Aifeng Liu; Ye Zhang; M Kumi Smith; Kate M Mitchell; Jason J Ong; Hongyun Fu; Peter Vickerman; Ligang Yang; Cheng Wang; Heping Zheng; Bin Yang; Joseph D Tucker Journal: PLoS Med Date: 2018-08-28 Impact factor: 11.069
Authors: Suzanne Day; Chunyan Li; Takhona Grace Hlatshwako; Fouad Abu-Hijleh; Larry Han; Chelsea Deitelzweig; Barry Bayus; Rohit Ramaswamy; Weiming Tang; Joseph D Tucker Journal: JAMA Netw Open Date: 2021-05-03
Authors: Rayner K J Tan; Dan Wu; Suzanne Day; Yang Zhao; Heidi J Larson; Sean Sylvia; Weiming Tang; Joseph D Tucker Journal: NPJ Digit Med Date: 2022-03-25