Scoping Review of Outcome Measures Used in Lived Experience-Led Mental Health Services

Service users have long advocated for alternative services led by people with firsthand or lived experience of mental health challenges. While several lived experience-led services, such as peer respites, are available, their evaluations rarely incorporate outcome measures to assess impact, thereby limiting evidence of their validity as alternatives to clinical services. The aim of this review was to identify and describe the outcome and experience measures used in lived experience-led services to better understand how evidence of their viability and acceptability is captured, and how this evidence supports these services as alternatives to traditional services.

A scoping review of peer-reviewed literature on lived experience-led services was conducted by searching four databases (PsycINFO, Ovid Medline, CINAHL and Embase). Eligibility criteria included studies describing services led and delivered by people with lived experience (LE) of mental health challenges that implemented outcome or experience measures, and that focused on services outside clinical settings and not co-delivered by traditional mental health professionals.

Thirteen studies were included that used a range of measures, including existing or adapted clinical and recovery survey outcomes. Results identify diversity in the outcomes measured and a lack of measures developed by the lived experience workforce.

While the results highlight positive outcomes of lived experience run services, they also reveal a reliance on traditional outcome measures and a critical need to develop LE-led outcome measures that align with lived-experience values and practice.

This manuscript was conceptualised and led by two researchers in designated lived experience research roles. These researchers identify as having lived/living experience of mental health challenges, service use and histories of trauma. The partnership between these two lived experience researchers (first and second authors) occurred through their shared interest in lived experience-led services and service evaluation. These authors use their lived experience to inform and guide this research, including the study's design, analysis and interpretation. The fourth author is also in a designated lived experience researcher role and contributed to the writing and revisions of the paper.