Co-production of Government Social Research: lessons learned from a Welsh Government and Disability Rights Taskforce prototype - Transformational value of lived experience

The literature review highlighted co-production as being part of a new methodological approach that combines emancipatory principles with participatory approaches, resulting in a human rights-based methodology (Implementing a Participatory Human Rights-Based Research Methodology: The Unfitness to Plead Project by Arnstein-Kerslake and others, 2019, available at Oxford Academic). Participatory methods treat knowledge production as a collaborative process and aims to address social issues by engaging with those directly affected by them. This builds on previous research by Stone and Priestley (Parasites, Pawns and Partners: Disability Research and the Role of Non-Disabled Researchers, 1996, available at JSTOR), who state that co-production methodologies can serve as ‘emancipatory practices’ with an emphasis on disabled people as research partners. Co-production, therefore, can be viewed through the lens of social activism and as a strategy which values difference, mutual response, and transparent, non-hierarchical networks. 

An important message arising from the interview evidence was that working together with people who have lived experience of being disabled by barriers in society or having an impairment was thought to have improved the overall quality and credibility of the research. It was thought that this was a core aspect of the added value of utilising a co-productive approach when delivering social research. 

For example, for the Disability Confident Employer Scheme research, the co-production team influenced the framing of the research questions and the identification of qualitative themes and interpretation of the research findings. This shared knowledge that was directly informed by lived experience strengthened the co-production team’s understanding of the research context and disabled people’s rights, supporting project planning and data analysis. Lived experiences of the Disability Confident Employer Scheme were also reflected in the research findings and conclusions. 

Similarly for the National Centre for Independent Living project, the research relevance and credibility were strengthened where the findings reflected lived experience through co-designing research questions. Insights from personal and professional experience from some members of the co-production team provided depth on specific issues relating to the theme of Independent Living in a Welsh context. Discussions amongst the co-production team about the appropriate methodology led to a deliberative workshop which was an approach that was deemed to be more feasible and meaningful for the research participants. 

From the outset of project scoping, the co-production team reflected they were keen to capture examples of lived experience of being disabled by barriers in society to bring the research outputs to life, create buy-in for the need for change, to make change happen and to communicate the impact of policy on disabled people’s lives. There are examples in the evidence where the incorporation of lived experience was considered to strengthen the overall policy impact. For example, it was felt the Disability Confident Employer Scheme research was published at the right time considering the DWP were simultaneously considering wider reforms to the scheme at a national UK level. Some members of the co-production team reflected on the sense of achievement having been directly involved with social research that was seen to have a direct policy impact. This aligns to one of the agreed project working assumptions for success which was “research needs to meet GSR standards so the findings can better inform policy and decision making”. 

It was reflected that one of the prototype’s main achievements was to have published 2 robust and useful research reports. For this prototype, lived experience was transformational as it provided a different lens to planning, organising and delivering the research. This was said to improve the typicality and trustworthiness of the final outputs. It was also reflected that the inclusion of lived experience of being disabled by barriers in society within the research was considered a more ethical approach to delivering social research and there should be more opportunities for this in the future. 

Questions were raised as to whether the prototype went far enough to embed diverse lived experiences and consider intersectionality. Suggestions from some members of the co-production project reflected on the need for greater representation in future research and how this will only strengthen the value of meaningful involvement by ensuring different perspectives are considered.

Interview evidence illustrates many positive examples of shared knowledge and learning from the combined expertise of the co-production team. Some interviewees reflected on the benefits gained individually and how the co-production prototype increased confidence and new pathways to participate in social research in the future for people who have lived experience of being disabled by barriers in society. 

For some members of the co-production team, the prototype was empowering and provided opportunities for personal development and growth. Some acknowledged they gained a deeper understanding of disability rights, particularly in the current policy context of issues relating to disability in Wales, as well as delivering research that is accessible and follows the social model of disability. Welsh Government social researchers within the co-production team reflected they felt they were better researchers as a result of this prototype and will apply the learning gained when designing future social research projects. 

Others reflected that they had gained practical insight into research skills and GSR processes and had since worked on other social research projects. These new learning opportunities were championed by some interviewees as one of the prototype’s main achievements. Others reflected on the value of the training opportunities and what they had gained from enjoyable sessions on the use of storytelling methods and learning more about ethical issues in social research. 

The prototype was said to have provided increased leadership opportunities for all co-production team members which was reflected as a positive outcome. Others reflected they had noticed an increase in their resilience, particularly when working on complex research projects that require diverse perspectives and collective solutions. Evidence showed that learning from the co-production resulted from the ongoing compromise and adaptation of co-production team members. This was seen as being part of the co-production process which was iterative and based on negotiation and re-negotiation. 

Some suggested that given the added value of embedding lived experience into social research for both the co-production team and individuals involved, there is a need for more dedicated resource at a strategic level to consider how co-production methodologies could be incorporated into social research in the future. It was suggested there could potentially be increased opportunities for social research advisory roles for people who have lived experience that were financially remunerated. This was viewed as a way to better incorporate diverse voices of those who have lived experience of being disabled by barriers in society in Wales.