Background/introduction Engaging people living with HIV in developing and participating in research is essential for improving quality of care and evidence based practice. Women and black and minority ethnic groups (BME) remain underrepresented in HIV research. Barriers to HIV research participation are underexplored.
Aim(s)/objectives To explore: i) barriers to participation ii)research preferences in our HIV clinic population- majority female and set in a socioeconomically vulnerable and diverse population.
Methods We developed a self-administered paper questionnaire which was reviewed by two patient representative organisations by email and group discussion. Questionnaires were completed in clinic November 2015 – March 2016.
Results From a cohort of approximately 1000 patients, 765 attended in the study period and 157 (20.5%) participated: 79 (50.3%) female; 81 (51.6%) black ethnicity, 41 (26.1%) white. Research participation: 74 (47.1%) had previously participated in at least one study; 118 (75.1%) would consider future participation. Research preferences: 66 (42.0%) patients expressed interest in both medical and social research, 60 (38.2%) medical and 17 (10.8%) social. Incentives: 69 (43.9%) were more likely to participate if incentives available; 62 (39.5%) were unsure whether incentives would influence participation; 21 (13.4%) said it would not. Travel: 60 (38.2%) patients were unsure whether they would travel to another clinic for research, 36 (22.9%) would travel and 33 (21.0%) would not. For 22 (14.0%) respondents, clinic location would influence a decision to participate. Barriers to participation: 51 (32.4%) fear of HIV disclosure; 52 (33.1%) fear of something going wrong; 45 (28.7%) time constraints.
Discussion/conclusion Our survey suggests that raising research awareness and disseminating information addressing fears and barriers could potentially increase research participation in our clinic.
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