Co-design of a systematic review: a shared reflection

Engaging people who have lived experience (LE) of a topic of enquiry increases the efficacy, integrity and robustness of research. This group bring improvements to all kinds of research, including systematic reviews. This paper is a shared reflection on the process of conducting a systematic literature review as a team including people living with mental and physical health concerns (with and without a research background) and researchers. We met several times to discuss the key aspects that made our shared work together successful, and identified key themes that we agreed were reflective of our shared experience. Reflecting on the process of the systematic review led the authors to identify the following themes as important areas of consideration when researchers and LE experts work in partnership: development and execution of meaningful partnership, skills development, decision making, academic guidelines, and history of gatekeeping of LE leadership. These themes speak to the necessity of power-sharing and interpersonal skills in the effective conduct of the co-designed systematic review. Academic guidelines regarding research methods (i.e. systematic literature reviews) may serve to replicate the existing power dynamics in research—prioritising research knowledge over lived experience perspectives. Researchers wanting to engage with people with lived experience must maintain reflexivity and flexibility in how they approach research, including in how decisions are made, to ensure that the engagement of lived experience experts is meaningful and transparent.