Inclusive research - the 2024 Seattle Club Conference

Inclusive research is not just confined to doing research with people with intellectual disabilities – it is used in one form or another across health promotion as a way to collaborate with people that might otherwise be underrepresented in research (and society more generally). My colleagues Dr. Louise Warwick-Booth, Prof Anne-Marie Bagnall, and Susan Coan have written a book about doing inclusive research.

At the conference I presented some findings from a recently completed NIHR project about how voluntary sector organisations can use technology to deliver services to people with learning disabilities and/or people with autism. The research was a ‘participatory realist review’. We looked at published research about how community organisations use technology to provide services for adults with learning disabilities and autism. We held an event for community organisations and adults with learning disabilities and autism. We talked about what we had found out and heard peoples’ experiences of using technology. The main things we found were that:

• There is lots of research that includes community organisations using technology.
• Having a choice about whether to use technology is really important.
• Using technology can make it easier for people with learning disabilities and autism to join in if they have the right equipment, skills, and support.
• But there is no information about what community organisations need to use technology to delivery services for adults with learning disabilities and autism.

The keynote presentation on Day 2 was by Prof. Jane Walmsley, previously of the Open University and now an independent consultant. Jane talked about the history of inclusive research with people with intellectual disabilities and some of the current opportunities and challenges for doing research this way. Inclusive research is potentially a way of getting more insightful data from people, it can make research more accessible, and make the results more likely to lead to change. There is also a moral imperative to doing inclusive research summed up in the slogan ‘nothing about us, without us!’.

Some of the challenges are that it is more time consuming, requires more money, and can be more unpredictable than research that is just done by ‘professionals’. Involving people with more profound intellectual disabilities is also extremely difficult.

I’ve written previously about some of the challenges I experienced trying to do inclusive research for my PhD project about football fans with intellectual disabilities. There are also lots of things that can discourage people with intellectual disabilities from wanting to be involved in research, like a fear that it will affect any benefits received.

The main thing I took from the Jan’s presentation and the other research that was discussed was that doing inclusive research is about relationships. People with intellectual disabilities and (professional) researchers need to know and trust one another before any research can take place. It’s then about negotiating how the power to make decisions is shared. Some argue that inclusive research is not proper until the people that research is about have total control over the whole research process (and control the money!!). However, currently there are still lots of individual and structural barriers that mean this does not happen regularly.