‘Widening cross-disciplinary research for mental health’: what is missing from the Research Councils UK mental health agenda?

Abstract

This current issues article is a brief critical examination of the recent Research Councils UK agenda and call for cross-disciplinary research in mental health. Our argument is based on the fact that patient and public involvement (PPI) is the only involvement and influencing strategy for service users and survivors in the agenda. Service user and survivor research as a discipline in itself remains unacknowledged. We conclude that service user and survivor research is distinct and is different to PPI, and should be recognised in any mental health research agenda.

Keywords:

• Mental health
• patient and public involvement
• service user research
• survivor research
• research agenda
• Research Councils UK

Introduction and background

During August 2017, Research Councils UK issued a press release announcing joint funding for mental health research, along with an outline agenda for ‘Widening cross-disciplinary research for mental health’ (Research Councils UK 2017a). The inclusion of the Arts and Humanities Research Council and the Economic and Social Research Council as partners held a promise that we would not see the bulk of funding going to clinical and scientific research such as genetics, digital and artificial intelligence applications and neuro-imaging, all overseen by a narrow messianic discipline of ‘neuroscience’ and the emerging enthusiasm for big data and machine learning in health. The documents make reference to the inclusion of a ‘user-led organisation’ and ‘service user organisations’ advising on the research agenda development. However, we have been unable to determine the identity of the service user and survivor organisations. From the nature and content of the agenda, we have also found it hard to detect the forms of influence service users, survivors and their organisations had on the conceptualisations of mental health research or on the proposed topics. Latterly, parallel omissions were evident in both the slide presentation and the attendee lists at the cross-councils’ mental health networking event held on 31 October 2017 (Research Councils UK 2017b).

We are concerned that an established, broad and multidisciplinary mental health research discipline which is ‘user or survivor-led’ is conspicuously absent from the cross-disciplinary funding agenda. We believe this absence may be due to inadequate recognition of service user and survivor research or to a lack of appreciation of equality issues regarding engagement and influence with organisations that are service user and survivor led and with service user and survivor researchers. The agenda and call explicitly outline an ambition to address the themes of inequalities and empowerment, ethics, confidentiality and trust. However, they currently restrict possible service user and survivor contributions to ‘patient and public involvement’ (PPI). In this article, we explore what is absent from the agenda and what the consequences could be.

Current user and survivor research and theory

Mental health service user and survivor research has a substantial documented history (Sweeney et al. 2009) and has developed its own ethical standards (Faulkner 2004) as well as building an international canon of work (Sweeney and Russo 2016). User and survivor researchers have developed evidence in collaboration both with other service user groups and with mainstream, academic researchers and practitioners (Tew et al. 2006). We have sought to develop participative research methods that support the inclusion of people experiencing distress, as well as exploring and advancing the role of research in knowledge production and change-making and advancing critiques of epistemology and epistemic justice.

To demonstrate that there is established and ongoing knowledge production from the collective experience by people who have used mental health services, let us first take some examples of current user-led work funded by major research bodies. Sweeney et al.’s (2016) National Institute for Health Research-funded research on access to assessment for psychological therapy is developing approaches to trauma-informed care from the perspective of survivors, while in another National Institute for Health Research-funded study Carr et al. (2017) examine the implications of English adult safeguarding reforms from the point of view of those who have experienced targeted violence and abuse in many settings, including mental health services. Funded by the Wellcome Trust, Rose (2017)’s ongoing user-led research has global reach, and seeks to track the history of activism and advocacy, where there has been resistance to the dominant discourses in mental health service provision.

These examples, and others, are located in universities, but all connect with user-led organisations, independent user and survivor researchers and knowledge generated outside the formal academic sphere. They are important because privileged knowledge is knowledge with power, institutional and epistemic, and directly engaging with these spaces creates a crucial arena for contestation. But, by the same token, knowledge created outside this ‘social apparatus’ has less credibility and little access to resources from formal research funding bodies, whilst at the same time allowing space for more engaged, grounded forms of research and thinking. The research interests go well beyond ‘mental illness’ agendas and constuctions of social normality determined by biomedical authorities (Crepaz-Keay 2016). Particularly significant is the work of people from marginalised communities, including Black, Asian and Minority Ethnic people and lesbian, gay, bisexual, transgender, queer and intersex people, who are much studied as subjects or populations in mainstream mental health research, but are rarely invited to speak for themselves or have access to resources to carry out their own independent investigations (Kalathil 2013; Carr 2015).

Neither is this an exclusively UK phenomenon. Significantly, since 2010 there has been an international ‘Service User Academia Symposium’ convened by service user researcher Dr Sarah Gordon of Otago University, New Zealand. This highlights service user and survivor research as a new discipline whilst perhaps rather narrowly focusing, in title if not in content, on academic rather than non-academic spaces of knowledge creation. Equally, there is a thriving Mad Studies course at Ryerson University in Ontario, Canada. This has influenced the Oor Mad History group in Edinburgh to gain university accreditation for the development and delivery of a course of that title at Queen Margaret University in Edinburgh, UK in two consecutive academic years. The Oor Mad History group is connected to a National Health Service Board-funded user-led advocacy organisation. This demonstrates that, with the appropriate networked support and cross-disciplinary investment, non-academic user-led organisations and initiatives can gain ground in the academy on their own terms and enhance and widen mental health knowledge and academic research practice.

The contention, then, is that there now exist distinct and established forms of research practice and an international body of work by and about those who have experienced mental distress and/or services first hand. This research asks different questions, approaches them with different methods and consequently has produced new thinking about the conditions on which so many clinical and other scientific experts have spoken for so long. It is in a very strong position to fulfil the UK Research Councils’ call for ‘novel and cross-disciplinary approaches to strengthen mental health research and to inform future cross-disciplinary research council investments’ (Research Councils UK 2017c, 1). While encouraging ‘collaboration and involvement with service users and people with lived experience of mental health problems’ (Research Councils UK 2017a, 9), the cross-disciplinary mental health research agenda does not appear to recognise service user and survivor research as being a separate and distinct form of mental health knowledge production. The call for cross-disciplinary network funding was issued in October 2017. The network funding criteria questions included: ‘does the Network include appropriate representation from non-academic users and stakeholders e.g. service user organisations, industry, policy organisations, and people with lived experience of mental health problems?’ (Research Councils UK 2017c, 4). In other words, service users, survivors and their organisations are pre-defined as consultants in research and knowledge-making and not positioned as leaders, knowledge-makers or researchers themselves. We do not appear to be permitted to enter the same terrain or space as ‘real’ researchers.

A structuring absence in the agenda?

England has spearheaded PPI in research and committed considerable funds and other resources to this. Whilst this has certainly facilitated work in this country, the empirical and conceptual research sketched out has taken a different and more critical turn. Thus whilst some governmental health research funders seem to rest on on their laurels regarding quantitative reports of the frequency of PPI in National Institute for Health Research-funded studies (Nasser et al. 2017), little is known about the power dynamics, impact or influence of PPI, with authors noting that although the approach holds promise, it is can be poorly understood and conceptualised (Rose 2017; Tritter 2009). Although PPI has a catalytic nature for clinical research studies, as demonstrated here, user and survivor-led research is an independent discipline in itself and should not be conflated with PPI. Some of the more limited practice and tokenistic approaches to PPI in clinical research can be restricted to ‘influencing’ through advisory roles, with resources and power remaining with non-user and survivor academic researchers. We argue that service user and survivor-led research is distinct and is different to PPI, and should be acknowledged as such in any mental health research agenda.

Conclusion

It may well be the case that those responsible for writing the Research Councils UK cross-disciplinary mental health research agenda and call were unaware of what we have summarised here. But if they were, they did not cast their nets very far. By not attending to this work, they have left certain key concepts and arguments unexamined and uninterrogated. Thus the language of diagnosis permeates and is taken for granted in the document, raising questions about how such a document could be written as if this was perfectly uncontentious. Similarly, ‘interventions’ are assumed to be clinical ‘treatments’ as if work on and investigations into peer support existed in some separate space. Also, in the rush to embrace ‘big data’ there is no critical interrogation of the categories by means of which these data are captured, meaning some things gain the status of ‘fact’ whilst others remain invisible, as they are not part of the epidemiological framework. Similarly, there is no reflection on the ethical implications of digital and big data, and the use of algorithms and genetics in mental health. So it is without question taken for granted in this announcement that what is wrong with us is an ‘illness’, a ‘mental illness’ to which this new funding call will deliver even better clinical ‘interventions’ or ‘treatments’. Instead, the call might have broken with the tireless focus on the isolated individual (brain) and recognised the established role of social determinants such as poverty, inequality, structural racism and austerity. These social conditions are tractable and this might have been a discourse where survivor research would be recognised, make a contribution, yet continue to push the boundaries. Mental illness may still be the routine term used, but in this model pharmaceuticals act as cover not cure and it is not hard in this framing for ‘illness’ to form a category waiting to be contested.

Such a discourse in fact is not absent everywhere. Research Councils UK should pay attention to epistemological and methodological challenges from the body of user-led and survivor research such that this work and what it represents is accorded the status of credible and legitimate knowledge; they might do well also to listen to the United Nations. We end with some quotations from the UN OCHR Special Rapporteur on Health (UNHRC 2017). In writing a forward view for mental health research and practice, he says:

Paternalistic and excessively medicalized concepts must give way to participatory, psychosocial care and support in the community. Cost-effective and inclusive options with successful outcomes do exist and are being used around the world today – they just need to be scaled up and maintained. (OHCHR 2017)

and:

Mental health policies and services are in crisis – not a crisis of chemical imbalances, but of power imbalances. (OHCHR 2017)

Disclosure statement

No potential conflict of interest was reported by the authors.