This blog post is the forth in a series of posts linked to the Evidence & Policy special issue (Volume 16, Issue 2) on Opening up evidence-based policy: exploring citizen and service user expertise. Guest Edited by Ellen Stewart, Jennifer Smith-Merry, and Marc Geddes.
Seventeen years ago, Diana Rose wrote that in mental health, user involvement was becoming ‘a technology of legitimation’ for reinforcing established powers. Seventeen years later, in examining some of the circuits and processors, Mazanderani and colleagues reveal how complex this ‘technology’ or machinery has become, and is still becoming. As though opening the doors of the machine room, the authors offer us a wealth of important insights and ideas. I’d like to share some thoughts on just a couple of them here.
I’m fascinated by the use of the term ‘lay’ when talking about patient and public involvement (PPI) in healthcare. I was brought up in the Catholic church, so my immediate association is with the ‘laity’, those who lack the religious authority and knowledge of the priestly class and cannot enter into their sacred space. The authors of the paper remind us that, in contemporary healthcare, ‘lay’ people are considered to be those ‘without academically-credentialised expertise in the topic at hand’, which is actually quite similar to what goes on in church. Medicine, like religion, has traditionally relied on boundaries and binaries that separate the doctor from the patient; the expert from the ignorant. In mental health at least, such boundaries are now being breached by those who have come to span them (such as service user/survivor researchers, peer support workers, therapists with lived experience and patient leaders), but efforts are still being made to rebalance the status quo.
Very recently, the National Institute for Health Research (NIHR) in England published a revealing information pack for ‘members of the public’ interested in joining health research funding committees. The document set out a number of eligibility criteria to distinguish between ‘patient and public’ and ‘professional.’ It stated that ‘to ensure we do not have an overlap of skills, knowledge and experience with our professional committee members, we exclude applications to public committee roles from people who have, or have had, a professional role in health or social care services or research.’
In outwardly responding to policy imperatives to include patients and the public in healthcare research, the NIHR seemed to be reasserting old binaries to permit this. The implied logic was that you cannot be both ‘patient’ and ‘professional.’ So, for the technology of legitimation to stay working, experiential knowledge and expert knowledge must remain separate and shouldn’t become cross-contaminated. Unsurprisingly, the document sparked some heated discussion among mental health service user and survivor researchers who have dual identities and possess compound knowledge and expertise. The authors of ‘Knowledge, evidence, expertise?’ ask us to consider how ‘hierarchies of knowledge, often associated with long-standing power differentials between experts and ‘lay’ people, continue to persist.’ They point to the need to focus on ‘how’ and ‘when’ ‘experience gets treated as knowledge’. In the case of NIHR funding committee member conditions, is the ‘how’ through the fortification of the fence between the knowledge classes and the ‘when’, when people understand their place on one side or the other?
While the NIHR’s intention to include ‘patient and public’ experience and expertise in their decision making was not an entirely bad one, the conceptualisation and execution was flawed. It’s possible that a similar situation could arise from the operation of ‘experts of experience’, that is, ‘experts of others’ experiences’, a new idea being brought to our attention in the paper. The authors describe ‘a growth of professionals specifically tasked with researching and managing people’s experiences’, and in this case, they point to conventional researchers, policy makers and health service workers. Of course, many such individuals will have sincere, personal motivations for doing so and share their power and influence equitably. But while remaining alert to the problems of ‘boundarising’, it might be useful to consider the emerging role of ‘allies’ in the context of mental health service user and survivor activism, particularly that led by survivor activists who Mazanderani and colleagues describe as ‘opinion leaders’ and who share their experiences in various ways, including ‘being active in online communities’ (some activists are becoming social media ‘influencers’, particularly on Twitter and other online platforms). While allies can play a vital role, such as supporting the foundation of the Mental Patients’ Union in 1973, we need to remain alert to some of the contemporary issues and complexities around solidarity and allyship. No matter how good their intention, there’s a risk that some allies will drift into becoming ‘experts of experience’ and speak on behalf of, or even over, those who they profess to support. Allies can be individuals or organisations, and we must remain conscious of types of individual and corporate allyship that can be described as ‘performative.’ In their thoughtful examination of being an ally to promote service user and survivor leadership, Happell and Scholz called for ‘allies to ensure their role is one of support and facilitation (doing what they can), rather than directing the content or speaking on behalf of the consumer [service user and survivor] movement (knowing their place).’ This is certainly something that I think ‘experts of experience’, ‘experts by experience’ and all those in between, should remain alert to as the technology of legitimation keeps evolving.
 Gilbert, D. (2019) The Patient Revolution: How can we come to heal the healthcare system? London: JKP
Dr Sarah Carr, Senior Fellow in Mental Health Policy, University of Birmingham, UK.
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