Exploring patient and staff member views on a 'consent for contact' system for sexual health research: A mixed methods study

Int J STD AIDS. 2024 May 16:9564624241254874. doi: 10.1177/09564624241254874. Online ahead of print.

Abstract

Background: Recruitment in sexual health research is challenging. This study explores the potential of a Consent for Contact system (C4C) - generic consent for research contact - to improve participant recruitment and engagement in sexual health research. Our objectives were to understand patient and staff understanding of research, their views on a separate C4C system, and their preferences for its acceptability in a sexual health clinic setting.

Methods: A two-stage study was conducted at a large urban UK sexual health clinic from November 2021 to July 2022. Stage one involved a self-completed questionnaire administered to all patients and staff. In Stage 2, semi-structured interviews (SSIs) further explored patient concerns and preferences. Survey data were analysed using chi-square and Fisher's exact test and thematic analysis was applied to free-text responses and SSIs.

Results: A total of 205/300 patient (68%) and 41/280 staff questionnaires (15%) were completed. Motivations for research participation included altruism and personal interest. Statistically significant differences were found between patients' and staff members' concerns on confidentiality and anticipated feeling of pressure to participate. The majority of staff (n = 38, 93%) and half of patients (n = 100, 49%) supported implementation of a sexual health C4C system. Participants recognised the potential benefits of a sexual health C4C system, including enhanced privacy and increased research opportunities. Concerns were raised about stigma, terminology, and signing-up methods.

Conclusion: This study found the C4C system has the potential to enhance participant recruitment and engagement in sexual health research, but implementation support is narrowly divided with concerns around privacy and sign-up processes. These insights call for a patient-centred design approach, emphasising clear communication and privacy. Future research should focus on implementing and evaluating a sexual health C4C system to further explore their effectiveness and acceptability in different contexts.

Keywords: Europe; epidemiology; human immunodeficiency virus; prevention; screening; viral disease.