Journal Article

P87 Who, what, when, where, how and why? Addressing the challenges of Patient and Public Involvement and Engagement (PPIE) within STI research and co-producing and applying a PPIE strategy within the SEQUENCE Digital research programme

Blandford, Ann, Estcourt, Claudia, McLeod, Julie, Gibbs, Jo, Crundwell, David, Flowers, Paul, Owusu, Melvina Woode, Saunders, John, MacDonald, Jen, Greevenbroek, Roos van, Lloyd, Karen, Bloch, Sonja

2022

Overview

IntroductionPatient and Public Involvement and Engagement (PPIE) can improve research relevance, quality, and impact but is challenging because STIs are often transient and stigmatising. We describe the co-production and application of an innovative PPIE strategy within the SEQUENCE Digital research programme (sequencedigital.org.uk), which is developing and evaluating a widely accessible eSexual Health Clinic.MethodsWe co-produced a PPIE strategy, enabling community contributions to on-going and time-limited research activities. Through multiple communication modalities (written and oral involvement through group/individual discussions, via phone, video, messaging, emails and face-to-face), we accommodated contributors’ schedules and preferences (including for anonymity). Research funding enabled remuneration of contributors.ResultsTwelve community contributors of diverse ages, genders, ethnicities, sexual orientations, religions, and experiences of disability, mild learning difficulties and STI healthcare were recruited through various community-based organisations (CBOs), co-production networks and personal contacts. PPIE informed the refinement of the study website, co-production of simple-read website text, and development of consent forms, interview materials, demographic questionnaires, topic guides, case scenarios and clinical pathway diagrams.ConclusionCo-production of the PPIE strategy supported early, flexible and anonymised contributions to STI research while minimising the time, financial and opportunity costs to the public, CBOs and service users. Commitment (of research time and funds) to involve diverse contributors facilitated a participant-centric, culturally appropriate and inclusive study website and materials. These tools supported recruitment of research participants, who less frequently participate in research, have broad lived experiences and varying sexual health needs, thus expanding the research relevance, quality and impact.Abstract P87 Table 1Patient and Public Involvement and Engagement (PPIE) within the SEQUENCE Digital research programme: Activity, Communication Mode & Modification & Impact MatrixNumber of contributorsPre-trial Qualitative Study Activity a, b, c Communication Mode Modification and Impact Emails Zoom meetings Mobile messages Face-toface Phone calls All studies Pre-trial qualitative study protocol 1 • Updated the narrative to make this more lay friendly• Clarified data collection process• Offered examples of barriers to accessing services Website content review (narrative & imagery) 3 • Updated and simple-read website option• Updated text throughout the website Demographic survey review 4 • Updated survey questions to be more inclusive of people with mild learning difficulties (MLD), and from minority ethnicities Access Study (A)Explores barriers and facilitators to engaging with online sexual health care among population groups who may struggle to use them and who have unmet sexual health needs. Visuals and demographics survey review 4 • Updated questions to be more inclusive of people from minority ethnicities and varying sexual orientations• Rephrased the questions to be more inclusive of people with disabilities and/or MLD Informed consent form and participant information sheet review 1* • Co-produced a simple-read informed consent form and participant information sheet to be more inclusive of people with disabilities and MLD Pilot interview and topic guide review 2 • Simplified the questions• Streamlined and rephrased questions for clarity• Rephrased the questions to be more inclusive of gender diverse communities• Streamlined and rephrased explanations of sexual health services• Prioritised the content to maximise the feasibility of conducting interviews within 60 minutes Contact Study (B)Explores the use of online sexual health care services for partner notification and accessing STI treatment. Fictional personas, visuals and document review 2 • Increased inclusivity and accessibility of questions to better represent a wider group of people Pathway Study (C)Explores the use of online sexual health care services to receive STI test results, access treatment and support partner notification. Pilot interview, and topic guide and visuals review 5 • Simplified visuals• Refined questions• Refined existing questions to be more inclusive of gender diverse people and people with disabilities• Added in additional questions to the topic guides to gather specific needs of people who identify as trans/who have a trans history and/or living with a disability a Community Contributors included Yesmin Begum, Tyrone Curtis, India Henry, Adam Nordin, Roeann Osman, Al Richards and six others, to whom the research team would like to extend a note of thanks. Some Community Contributors took part in more than one research activity.b Community Contributors had a wide range of lived experiences, and sexual health needs. The group included people who less frequently engage with research, including people with a trans history or who identify as trans/who have a trans history, people from black and minority ethnic groups, people with a disability, people with mild learning difficulties.c Community Contributors were identified with support from the Co-Production Collective and the Black Health Agency for Equalityv.* The research team also worked with community-based organisation, get2gether who work with adults with disabilities to co-produce a simple-read informed consent form and participant information sheet.

• Publisher: BMJ Publishing Group Ltd,BMJ Publishing Group LTD
• Subject: Abstracts / Communication / Disability / Ethnicity / Informed consent / Learning disabilities / Minority & ethnic groups / People with disabilities / Sexual health