Lived experience evidence in disability policy making

Welsh Government is committed to including lived experience evidence in policymaking wherever possible. This commitment was reinforced in disability policymaking following the publication of the in 2021.

This report – published in both a plain language and easy read format – considers the role of lived experience evidence and co-production in disability policymaking in Wales in practice, and addresses the following questions:

  • What role does evidence based on lived experience play in disability-related policymaking, as viewed by policymakers, knowledge-brokering organisations, and grassroots groups?
  • In what manner is evidence from lived experiences conceptualised and utilised?
  • How effectively are different types of evidence (research, professional, tacit, and lived experience) integrated in a collaborative and co-productive manner?

The findings are based on analysis of key documents and 7 interviews with individuals representing disability grassroots organisations (GROs) who had contributed to Welsh disability policymaking, knowledge brokering organisations (KBOs) who had provided evidence to inform Welsh disability policymaking, and officials within Welsh Government involved in the Welsh disability policymaking process.

The report finds that people have different understandings of what lived experience and coproduction mean in disability policymaking. For some, lived experience evidence can include the knowledge and experience of disabled people, as well as their parents or carers and professional organisations and service providers representing disabled people. In some documents and interviews, lived experience evidence was seen as synonymous with good qualitative research. This can lead to differences of opinion over what counts as lived experience evidence and expertise and who should be involved in co-producing policy; with research and professional knowledge often being substituted for or elevated above the knowledge and experience of disabled people. The report also finds barriers to inclusion of lived experience evidence in policymaking due to the mechanisms used to access evidence and experts, and a lack of trust in policymaking processes among disabled people. Finally, the report finds differences of opinion on what including lived experience and coproducing policy involves and should seek to achieve. Issues were raised regarding the time and resources required to coproduce policy, while others stressed the potential to save time and money by avoiding policy and implementation failure.

The research and reports were produced by during a 3-month PhD internship with the Wales Centre for Public Policy (WCPP). Kat is an Economic and Social Research Council (ESRC) funded PhD student in the School of Social Science at Cardiff University, as well as a non-executive director of a disabled people’s organisation and an individual who is openly neurodivergent. Kat concludes the report with a set of recommendations for policymakers and knowledge brokers to enhance the role of lived experience and coproduction in disability policymaking in Wales. You can read Kat’s blog about her experience as a PhD Intern at the WCPP here.

The Wales Centre for Public Policy is also currently hosting an ESRC Policy Innovation Fellow, Dr Rounaq Nayak, to enhance our skills, capability and knowledge in relation to involving experts by experience in our work. This project involves exploring current practice, drawing on insights from wider research and policy practice, experimenting through action research, and consolidating and sharing learning. The project will be completed in April 2025.