Shared leadership and disrupting tokenistic involvement/co-production in academic research: a user led perspective on obstacles and opportunities

Background
There exists a long and arguably unethical history of doing research to disabled adults. In this paper, we reflect on our attempt to deliver a research project, focused on social care, in ways that disrupt tokenistic methods of involvement and instead seeks dialogical and egalitarian forms of collaboration.

Methods
Our intention is to share several reflections on delivering a project as people who share identities that span being disabled, academic, and users of social care. The project that is the focus of our discussion is funded by the NIHR Three Schools Prevention Programme and started in April 2025 running to March 2027.

Findings
Reflecting on our learnings so far, we outline what we believe are the necessary attributes for working in ways that are anti-oppressive and egalitarian. These include the work necessary to cultivate longstanding and trusting relationships, the importance of seeking and applying methodologies that move us beyond the descriptive, and the setting of research practice within user-led organisational agendas and campaigns. We give voice to the practices underpinning each theme, whilst framing our dialogue in the context of what William et al (2020) refer to as the principles of ‘New Public Management’ that have repeatedly presented challenges to this work.

Discussion
In presenting this paper, our intention is to speak openly and transparently about the lived realities of doing research that aims to disrupt tokenistic notions of involvement. Reflecting on what Jancovich and Stevenson (2021) call the 'production of uncritical stories of unconditional successes from which the sector fails to learn', we aim to do justice to the 'everydayness' of attempting to do co-production between user-led organisations, academic institutions and local authorities.