Patient and Public Involvement in the development of an online intervention for young people with acne: novel approaches to reach underserved groups
Problem
Acne is very common and can substantially affect quality of life. The Acne Care Online program is developing an intervention for young people to improve acne-related outcomes. PPI is vital in ensuring that the range of experiences and perceptions of target users are included, so that their needs can be met. In previous acne research people aged under 18 and from ethnic minority backgrounds have been underserved. To ensure we involved public contributors in a meaningful way we aimed to recruit an advisory group of young people with acne in addition to including three experienced public contributors in an intervention development group.
Approach
To form an advisory group, young people were recruited through social media and school engagement. We used targeted social media advertising, and focused on areas of high ethnic and LGBTQIA+ diversity. In schools we delivered workshops and approached student leadership groups. We also attended in-person meetings of existing young people’s PPI groups. Invitations to optional activities such as completing online questionnaires or discussion groups are shared when they become available. The group are paid for their time in gift vouchers at the NIHR recommended rates.
Findings
Social media advertising was particularly successful, and attracted diverse interest from young people with acne. School engagement to date has allowed us to gain feedback from pupils during an example activity but has attracted little interest in joining the advisory group. The group includes 24 people (13 white, 18 female, 17 aged under 18, 7 LGBTQIA+). The group have contributed to decisions about the study design. For example, by giving detailed feedback on possible outcome measures, or providing insight into which issues relating to acne are most important to young people. Challenges encountered include; automated algorithms affecting social media advertising, members joining the group using false details, members providing minimal detail in feedback forms and little interest in attending group events. This has been mitigated by seeking in-person feedback from established groups, such as schools/colleges and existing young people’s PPI groups, and by engaging in more depth with members of our advisory panel who have already provided detailed feedback.
Consequences
Experienced public contributors provide longitudinal input to intervention development. Our advisory group has provided input from people who may not have the confidence to speak in an academic setting or be willing to commit to regular or long-term involvement. Reporting difficulties encountered can help inform strategies for future involvement of young people.