Table 1 PPI activities in PROUD
PPI Activity | Area of impact (based on PiiAF [11]) | |
|---|---|---|
1. | Membership of e-group to design trial (> 10 community members) | • Agenda • Research design |
2. | Membership of advisory committees: • Community engagement group (CEG) (involved in development of study documentation, recruitment strategies, dissemination plans and messages). The group met approximately every 6 months (11 community members) • Trial steering committee (trial oversight). The group met approximately every 6 months. (3 community members, including co-chair) • Trial management group (research design and delivery, analysis of data, writing up and dissemination). The group met approximately every month. (All 11 CEG members invited and provided with minutes) • Independent data monitoring committee (trial oversight). The group met three times. (1 community members) | • Research design and delivery • Ethics • Recruitment • Data collection • Analysis of data (interpretation) • Writing-up • Dissemination |
3. | Extended Community Engagement Meeting in June 2013 at the Medical Research Council in London – this involved people working in the media or on dating sites (8 community members) | • Recruitment |
4. | Participant involvement meeting: a. 12th November 2013: ‘Future Options for PROUD’ by teleconference and webinar (8 participants) b. 19th March 2014: ‘Future HIV prevention research priorities’ at Terrence Higgins Trust in London (17 participants) c. 9th & 11th September 2014: ‘Study design and data collection tools for a larger PROUD trial’ at the Medical Research Council (in London on 9th and by teleconference on 11th September) (12 participants) d. 16th & 18th February 2015: ‘PROUD Study Results’ at the following locations: i. Manchester: 16th February (5 participants) ii. London: 16th February (24 participants) iii. Brighton: 16th February (14 participants) iv. Sheffield: 18th February (4 participants) e. 25th June 2015: ‘World Health Organisation PrEP Implementation Guidelines’ at 56 Dean Street clinic (11 participants) f. February 2017: review of the interpretation of an analysis of self-reported depression during the study (13 participants online) | • Agenda (future research) • Research design (future trial) • Data collection • Analysis of data (interpretation) • Dissemination |
5. | Involved in communicating results of the PROUD study, from February 2015 onwards, including: • Getting involved with making the PROUD film documentary (2 community members and 3 participants) • Attending showings and panel discussions of the film (various locations around the UK) • Speaking to the media or providing information to the media (> 5 community members and > 5 participants) • Getting involved in the World AIDS Day twitter event (December 2015) (1 community members and 1 participants) • Speaking to groups as a participant or community representative of PROUD (> 5 community members and > 3 participants) (various locations around the UK) • Getting involved in advocacy as a PROUD participant (for example through United4PrEP) (> 5 community members and > 5 participants) | • Dissemination |
6. | Reviewed a new PROUD study questionnaire by email in November/December 2015 (6 community members and 6 participants) | • Research design and delivery |