Towards conceptualizing patients as partners in health systems: a systematic review and descriptive synthesis

Abstract

Background With the sharp increase in the involvement of patients (including family and informal caregivers) as active participants, collaborators, advisors and decision-makers in health systems, a new role has emerged: the patient partner. The role of patient partner differs from other forms of patient engagement in its longitudinal and bidirectional nature. This systematic review describes extant work on how patient partners are conceptualized and engaged in health systems. In doing so, it furthers the understanding of the role and activities of patient partners, and best practices for future patient partnership activities. Methods A systematic review was conducted of peer-reviewed literature published in English or French that describes patient partner roles between 2000 and 2021 in any country or sector of the health system. We used a broad search strategy to capture descriptions of longitudinal patient engagement that may not have used words such as “partner” or “advisor”. Results A total of 506 eligible papers were identified, representing patient partnership activities in mostly high-income countries. These studies overwhelmingly described patient partnership in health research. We identified clusters of literature about patient partnership in cancer and mental health. The literature is saturated with single-site descriptive studies of patient partnership on individual projects or initiatives. There is a lack of work synthesizing impacts, facilitating factors and outcomes of patient partnership in healthcare. Conclusions There is not yet a consolidated understanding of the role, activities or impacts of patient partners. Advancement of the literature has been stymied by a lack of consistently used terminology. The literature is ready to move beyond single-site descriptions, and synthesis of existing pockets of high-quality theoretical work will be essential to this evolution.

A systematic scoping review exploring how people with lived experience have been involved in prison and forensic mental health research

“…This was particularly notable for forensic mental health patients with only two relevant papers published in 7 years out of the 675 originally retrieved papers (Abram et al, 2020;Tearle et al, 2020). Vanstone et al (2023) found 314 health research papers (published in peer reviewed journals between 2000 and 2021) where patients were cited as partners; of these 80 were research relating to mental health conditions. PPI in prison and particularly forensic mental health research appears behind general mental health in involving people with lived experience in research (Vanstone et al, 2023).…”

“…Vanstone et al. (2023) found 314 health research papers (published in peer reviewed journals between 2000 and 2021) where patients were cited as partners; of these 80 were research relating to mental health conditions. PPI in prison and particularly forensic mental health research appears behind general mental health in involving people with lived experience in research (Vanstone et al., 2023).…”

“…For these purposes, we defined lived experience as having been detained in prison and/or secure units and/or having been subject to probation/forensic mental health community services. As PPI activities have proliferated within general mental health research in recent years (Vanstone et al, 2023), we anticipated that our scoping review would produce much more information in this fast changing area. Our questions were based broadly upon the GRIPP2-SF tool (Staniszewska et al, 2017)…”

“…Advances in PPI policy have led to a ‘steep increase’ in mental health research citing service users as partners (Vanstone et al., 2023). The reporting of PPI has, however, been ‘inconsistent and partial, with little information about the context, process, and impact of public involvement’ (Staniszewska et al., 2017, p. 3).…”

“…For these purposes, we defined lived experience as having been detained in prison and/or secure units and/or having been subject to probation/forensic mental health community services. As PPI activities have proliferated within general mental health research in recent years (Vanstone et al., 2023), we anticipated that our scoping review would produce much more information in this fast changing area. Our questions were based broadly upon the GRIPP2‐SF tool (Staniszewska et al., 2017) which sets out guidance for reporting PPI inclusion in research activities. What is the context of the research studies in this area that include PPI? Were the aims of involving people with lived experience documented in the research article?…”