People with Lived Experience in Research

This article presents a scoping review of numerous articles highlighting research evidence and implementation gaps in the engagement of people with lived experience (defined as PWLE in this article) in mental health and substance use research. The engagement described goes beyond PWLE as research participants, instead focusing on roles such as research advisors and co-researchers. There were forty-nine literary articles chosen from an electronic system database and analyzed through a codebook thematic analysis, which is a practical method that involves organizing themes gathered from literature. Through their assessment of the literature, the authors of the article outline the current state of engagement of PWLE in research, while also addressing areas where further effort is needed for effective implementation of PWLE in the research field.

Existing literature indicates that engaging PWLE in mental health and substance use research creates stronger connections and collaborations between researchers and the community. Such collaborations increase the chance that implications of research outcomes will be implemented and sustained in practice and policy contexts. Despite some clear findings from the reviewed articles, evidence gaps remain that indicate the need for future research. These include better understanding of PWLE engagement in research, establishing resources for researchers to better develop practical methods in engaging PWLE in research, increasing the diversity of PWLE engagement in research teams and settings, and evaluating the impact that PWLE has on research. Regarding the implementation of PWLE within research roles, identified institutional gaps included lack of funding for such positions, lack of support for PWLE within research settings and lack of engagement of PWLE within everyday practices such as providing training, mentorship and leadership opportunities.