No research about us, without us. Removing research barriers for people with learning disabilities

Start date: 1 June 2023
End date: 30 November 2025
Funder: National Institute for Health and Care Research (NIHR)
Value: £139,668
Partners and collaborators: East Suffolk and North Essex NHS Foundation Trust, National Development Team for Inclusion, Learning Disability England, Speak Up Self-Advocacy, Thinklusive, University of Glasgow, Cardiff University, University College London, University of Dundee, Health Innovation East
Primary investigator: Dr Amy M Russell
External co-investigators: Gary Bourlet, Learning Disability England (JOINT PI), Jyothika Kumar, Katharine Richardson, Rachel Royston, Susan Buell, Vaso Totsika, Victoria Shepherd, Geoff Doncaster, Maximilian Clark, Paul Charlton, Victoria Farnsworth, Jodie Bradley, Angela Henderson, Anna Marriott, Samantha Clark & Deborah Cairns

Description

The National Institute for Health and Care Research offered research teams, charity organisations and community groups funding to develop partnerships together. These research partnerships came together to tackle the barriers preventing research happening in certain communities.

Our community is the learning disability community. We have connected self-advocates with a learning disability, support workers, national learning disability organisations, accessible communication experts, professional researchers, and the National Health Service to examine the barriers stopping research from including people with a learning disability. We explored ways of overcoming some of those barriers and made recommendations for future research. We agreed how best to work together and then tested if our way of working together felt successful for everyone.

Downloads

How to Ethically Share Power

Project website

https://www.learningdisabilityengland.org.uk/no-research-about-us-without-us