A paper published recently in the journal Research Involvement and Engagement overviews the current state of service user involvement in mental health research and practice in the UK. Peter Beresford, the author of the paper and self-described “writer, researcher, educator, activist, and (long term mental health) service user,” draws on his wide range of personal and professional experiences to summarize 40 years of public and service user involvement.
“I have been privileged to be part of the emerging psychiatric system survivor and disabled people’s movements over that period, as well as being involved in UK government developments at a high level, and in voluntary organizations, user-led and disabled people’s organizations (ULOs and DPULOs) and activities and also international schemes, as well as initiatives in other countries,” Beresford writes.
“This has offered me close-up insights into theory, policy, and practice developments over this period as well as opportunities to be part of them. It has introduced me to many people involved in such activities as policymakers, educators, practitioners, service users, and family carers.”
The psychiatric survivor’s movement and the disabled people’s movement have historically had a complicated relationship with one another, given that they have traditionally focused on different issues and proposed different tactics. And yet, both are premised on the importance of building networks of collective support within marginalized and disempowered groups.
Beresford outlines how such movements have gradually become institutionalized in the UK into a general notion of public, patient involvement (PPI). PPI, in this sense, might range from the development of scales that measure how professionals understand the rights of service users to more direct attempts to integrate user feedback, as with approaches like the Power Threat Meaning framework, for instance.
With a more progressive vision of user involvement in mind, Beresford calls for user activists to mobilize their collective action to address problems in the following five areas: broader ideology, politics and democracy, knowledge and research, diversity (and its equalization), and making change.
Problems he describes at the level of ideological relations reflect a broader shift towards a consumerist model of mental health, which started with earlier welfare reforms during the 1970s. Here, inclusion takes the form of market research participation as opposed to more direct democratization of services.
As Beresford describes, these approaches to PPI promise “public and service users a chance to be heard in public policy, but not a seat on the board.” Such an “involvement for information” mentality treats user input as valuable only insofar it generates more profit for those organizations that ask for it.
Building on these ideas further, when it comes to the importance of political relationships, Beresford points to how health care policies across Western Europe and America have moved towards an increasingly right-wing, neoliberal position.
Terms like “self-management,” “peer-support,” “peer-worker,” and “person-centered support” have thus been hollowed out and effectively rendered meaningless over the last ten years, as they have come to mean very different things across the various institutions involved.
Nowhere is the neoliberalization of health policy more evident, he suggests, than in areas related to research and knowledge development. Despite mounting claims that user feedback is essential, randomized controlled trials and systematic reviews—where users’ thoughts and feelings become overcoded largely in terms that are irrelevant to their lived-experiences—remain the ‘gold standard’ of research and policy setting. This enforces a premium on ‘value-neutral’ knowledge in ways that serve to devalue users’ feedback, often based on them being “too close to the problem” and thus not adequately objective or reliable sources.
Such examples of epistemic injustice underscore long-standing problems related to exclusion in psychiatry, with institutionalized forms of discrimination evident across categories like race, gender, sexuality, class, communication style, and non-ordinary experience. Going further, it is becoming increasingly apparent that ‘user-led’ research does not have the same importance across all areas of the globe, echoing calls for a regional approach to mental health that runs counter to impulses underpinning the global mental health movement.
Lastly, Beresford takes aim at the concept of “making change” itself. As he suggests, “not all change may be seen by service users as in their interests.” As a case in point, he describes how some users at the end of their life altruistically offer feedback to improve services for others later on, only for their feedback to be reframed according to the consumerist model outlined above.
In this sense, the very idea of changing the system can be appropriated to convince users to help only in ways that benefit the institutions that profit from providing services to users.
To redress these issues, Beresford proposes that user activists and professionals work collectively towards the following six concrete actions:
- More inclusive methods of involvement need to be employed that move beyond the continuing reliance on contribution through conventional meetings and written forms. Instead, organizations must reach out to people, their organizations, and communities, rather than relying on them responding to calls.
- Funders and the funding system need to improve and equalize the funding they offer user-led organizations. These provide crucial platforms for developing user involvement and co-production, co-learning, user-led services and support, and user-controlled research.
- The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) sets out a model for ‘independent living’ derived from the disabled people’s movement, which provides an invaluable and unifying philosophical base to underpin any effort to involve service users.
- Increasingly service user and their allies distinguish PPI and their calls for greater involvement and empowerment in research. Such a gap needs to be carefully examined and challenged.
- A thoroughgoing inquiry is needed into the practical and methodological implications of user involvement and experiential knowledge in research, teaching, and learning, developing participatory PhDs to ensure parity in research policy, institutions, and practice.
- Research careers for service user researchers need to be further resourced and developed, rather than them hived off and restricted to narrow roles of ‘peer researchers’
Beresford, P. PPI Or User Involvement: Taking stock from a service user perspective in the twenty-first century. Res Involv Engagem 6, 36 (2020). https://doi.org/10.1186/s40900-020-00211-8 (Link)
I agree, “experts by experience,” should be listened to, and our research findings should be respected.
But our research is largely dismissed because the psychiatric profession does not want to get out of the business of turning people into “bipolar”/“schizophrenics” with the psychiatric drugs.
It’s big business making people psychotic, with the anticholinergic drugs.