Table 1.
Community Involvement Activities in the PLATINUM Trial
Activity | Activity Description | Impact on Trial |
---|---|---|
CAP | Includes persons recovered from mpox, sexual health workers who have treated mpox patients, gay and bisexual, and other men who have sex with men, and people with HIV; contributed to study protocol, participant information sheet, consent form, patient recruitment poster and flyer, participant questionnaire, press release, and website |
Increased inclusivity and appropriateness of language used in patient-facing materials |
Raising awareness | Presentation of trial at conferences by community members (eg, HIV Glasgow); interview with community podcast “What the Pox?”; hosting a stall at Manchester Pride festival 2023 to provide information about the trial to festival attendees |
Identification of potential avenues for raising trial awareness that are outside routine trial recruitment strategies; increased community awareness about the trial |
Training | Training provided to CAP members on trial background, planned future training on scientific publications | Increased community member understanding of the trial and research in general |
Community-delivered training in stigma and HIV history to trial team as a result of steering committee recommendation | Whole trial team invited to training; attendees gained greater understanding of the stigma faced by groups at risk of mpox and appropriate language and terminology to use when engaging with those communities | |
Community representation in steering committee | A CAP member is a member of the trial steering committee; training in stigma and HIV history was recommended by the community representative | Community voice present in trial governance |
Communication with clinics | Advice from CAP on how to recruit potential participants in clinics across the country | Patient-centered and language-appropriate recruitment posters and flyers |
Community organization engagement | Support from Terrence Higgins Trust, UK Community Advisory Board, Positively UK, NAM AIDSMAP, Prepster, and HIV i-Base; HIV i-Base, Positively UK, and the British HIV Association have included the trial on their websites | Increased community and healthcare worker awareness of the trial, including diverse high-risk community groups |
Trial launch | CAP reviewed the press release, provided a statement within the release, and tweeted about the trial launch alongside supporting organizations; this, together with trial team and university tweets, potentially reached >1.4 million people, and the trial was covered by community media channel PinkNews | Improving awareness for potential participants beyond those normally reached by research organization engagement |
Abbreviations: CAP, Community Advisory Panel; HIV, human immunodeficiency virus.