The guidance was developed as part of the SPCR 2024 Public Involvement-funded project, Working with Autistic Adults to Widen Research Participation, led by Dr Jane Vennik and Dr Sascha Miller at the University of Southampton.
The project aimed to address the underrepresentation of autistic adults in health research by working directly with autistic people to understand the barriers they face when participating in studies. Researchers identified challenges including complicated recruitment methods, inaccessible participant information, and instructions that can be difficult to follow.
Working collaboratively with autistic adults and community organisations, the team adapted Southampton’s “Listening Café” model — informal, relationship-focused sessions designed to create inclusive spaces for discussion and co-production. Insights gathered through these sessions informed the development of practical guidance for researchers on designing more accessible recruitment materials, communication methods, and participation processes.
The guidance provides practical recommendations for improving inclusivity across all stages of research participation, including study adverts, participant information sheets, consent processes, and researcher communication practices. The work has already informed materials used within the department and contributed to wider discussions around inclusive research practice.
The guidance was recently shared as part of the SPCR Masterclass, Designing Inclusive and Accessible Health Research (see link for recording below), which explored practical strategies for improving accessibility and inclusivity in primary care research.
Useful links
- Guidance Document: Creating inclusive research recruitment: guidelines from lived experience
- Project No: 733: NIHR SPCR – Working with Autistic Adults to Widen Research Participation
- Masterclass Recording: SPCR Masterclass – Designing Inclusive and Accessible Health Research