Collaboration with people with lived experience of prison: reflections on researching cancer care in custodial settings

Abstract

Plain English summary While patient and public involvement is increasingly considered important in health research, very few papers reflect on the process of collaborating with people with lived experience of prison in health research. This paper is based on written and verbal reflections of both the lived experience and academic researchers on the project that explored how cancer is diagnosed and treated in prison. For academics and lived experience researchers to collaborate successfully and meaningfully care needs to be taken to develop open, honest and equal working relationships. Skills development for academic and lived experience researchers is important. A commitment to building and maintaining relationships is crucial. Having a third party as a mediator can facilitate and foster these relationships. Particularly with people with lived experience of prison it is essential to put the ‘do no harm’ principle into practice and to have support in place to minimise this. The process of writing this paper provided additional opportunities to reflect on the collaboration which we all found vital. Involving lived experience researchers on all aspects of the research process can strengthen the design, relevancy and outcomes of studies. The process, however, can be emotionally challenging for lived experience and academic researchers, underscoring the need for space for open and honest reflection and learning. Particularly for people with lived experience of prison, being involved in research studies can be a great source of personal growth as it offers an opportunity to use and reframe their, often traumatic, lived experience in a positive way.

Keywords

• Peer research
• Co-production
• Cancer
• Prison
• Lived experience
• Experts by experience