Building Momentum: Extending Inclusive Research Engagement in Primary Care

PI Title: Dr Jane Vennik & Dr Sascha Miller 

Lead member: University of Southampton 

Aims:

Our department wants to make sure everyone has a fair chance to be involved in health research. We already work with a wide range of people through initiatives like Listening Cafés and community groups. This funding will help us continue and extend that work, focusing on people with learning disabilities and neurodivergent people.

Many people from these communities want to help with research but don’t always get the chance. It can be hard to take part, or they may worry their ideas won’t be listened to. This project will help us learn how to make research more open and welcoming for everyone, and help our whole department do a better job of including people who are often left out.

What we plan to do:

We have already worked with two groups: an online autistic group and a local community group run by the National Autistic Society. They told us what would help them take part in research and what research topics matter to them. Their ideas helped us create guidelines for more accessible and inclusive recruitment materials. These are already being used within the department and have influenced university-wide templates.

This project will build on that work through two activities:

1. Set up a Community Panel of neurodivergent people.

We will invite 6–8 neurodivergent people from our existing groups to join a new Community Panel (pre-grant). Every two months, up to four members will meet online, with the group changing each time (Oct 25-Sep 26). This approach means:
• Everyone gets a better chance to speak
• No one is asked to do too much
• A wide range of voices are heard over time
• We can support members before and after meetings
Panel members may also take part through smaller group meetings, one-to-ones, or written feedback (Oct 25 – Sep 26).

The community panel will:
• Help plan research that matters to their community
• Give feedback on research before funding application
• Spot things that make it hard for people to take part in research
• Support new research projects once they’ve started

The panel will reflect diversity in age, background, and experience and be open to all researchers in the department. This builds on previous work and keeps up momentum across the department for more inclusive research.

2. Develop and deliver Listening Cafés with a Learning Disability Group (Oct 25-Apr 26)

We will work with a local learning disabilities group (e.g. MENCAP) to adapt our listening café model (Oct-Dec 25). This will extend the department’s engagement work and give people with learning disabilities and their carers a voice in research.

We will co-deliver three informal sessions (Feb-Apr 26) in a familiar setting to:
• Build trust and relationships
• Understand what makes research feel difficult
• Create new ways to help people get involved
• Identify problems getting health care

We will use creative, accessible tools (e.g. games, crafting, one-to-ones), co-designed with community leaders and PPIE collaborators. Carers and facilitators will support participation so everyone can take part if they want to.

Amount awarded: £5,000