Project 807 | Hearing the voices of underserved patient populations with Hidradenitis Suppurativa

This project aims to establish a diverse patient and public involvement (PPI) group for Hidradenitis Suppurativa (HS) within the Centre of Evidence-Based Dermatology (CEBD) at the University of Nottingham (UoN). Patient groups underrepresented in HS research and clinical trials include adolescents, people with milder HS typically managed in primary care, those of lower socioeconomic backgrounds and with a range of skin tones (Elhage et al 2023).
Furthermore, there is evidence of health disparities, including delayed diagnosis and greater symptom severity, among racial and ethnic minority groups, highlighting barriers to engagement (Jaleel et al 2024). To improve inclusivity in evidence-based HS care, we must explore barriers to research participation.

Objectives:
1. Recruit a diverse PPI group from primary and secondary care HS populations.
2. Co-design recruitment resources with CEBD PPI members to encourage diverse recruitment.
3. Conduct online workshops with PPI members to prioritise and refine research questions addressing a research priority identified in a previous HS priority setting partnership (PSP) by the James Lind Alliance (JLA) in 2013.
4. Plan with PPI members how to reduce the barriers to participating in HS research for under-represented populations.
5. Build capacity for HS research at the CEBD by supporting early to mid-career researchers to develop doctoral and postdoctoral fellowship proposals with meaningful PPI input.