User-led Research
Towards a Radically Different Mental Health System

ALISON FAULKNER AND VICKY NICHOLLS
Mental Health Foundation, London, UK

So many people feel that research is done to them…[User-led research] is all part of the rising tide of empowerment really, people feeling more in control of what they do. [quoted in Nicholls, 2001]

The Mental Health Foundation’s Strategies for Living project started in the autumn of 1997, with the aim of documenting and disseminating people’s strategies for living with mental distress in all its forms (Faulkner, 2000). In order to do this, the original team both carried out a core research project and supported other service users and survivors to carry out smaller pieces of research (all listed at the end of this document). Throughout this work, we have encouraged and promoted user-led research in mental health, with the aim of enabling service users to begin to set the research agenda, and to carry out their own research. The central ethos of the project has always been about learning from each other; we have aimed to support and train people in a facilitative way, recognising our own and others’ periods of strength and distress.

The project is now into the second phase of its life, with the establishment of a UK-wide network of users and survivors interested in carrying out their own research, evaluation or monitoring projects. A new team of three Research Support Workers is in post: one for England, one for Wales and one for Scotland and Northern Ireland. We begin a new phase of the work, hoping to extend both the reach and the influence of user-led research.

With this chapter, we address the following questions:

• What is user-led research and why is it important?
• What role can it play in the development of the future of mental health services?

A crucial question in all of this concerns the nature of evidence in ‘evidence based medicine’, a concept currently playing a central role within the health service (Faulkner and Thomas, 2002). Evidence for effectiveness is indeed important when considering the merits of different treatment interventions. But, before implementing the results of the latest randomised control trial (RCT), all practitioners would do well to heed the evidence of service users. Our evidence should be a vital and central element in the move towards evidence-based practice.

How, then, can we best challenge conventional notions of evidence in order to place the service user (and user-defined strategies and outcomes) at the centre of mental health care?

User (or survivor)-led research is, essentially, research directed by, or led by, service users or survivors. ‘User-led research’ can be understood in different ways. The term ‘user’ here includes people who have used and who continue to use mental health services, and those who would describe themselves as survivors - either of the mental health system or of diagnoses or of particular experiences of distress or mental and emotional ill-health. For some people it has a narrower definition than this, and in terms of who becomes involved in research, ‘user’ may for example sometimes mean people who currently use a particular service such as a drop-in, and who are looking to give comments on their experience of that service.

What we mean by ‘user-led research’ is research in which service users get the opportunity to decide on the issues and questions to be looked at, as well as to design and carry out the research. It is our experience that getting involved can be liberating and can increase people’s self-confidence, and supporting research that is relevant to people who have experience of mental health problems can, we believe, help to shape services that are supportive and respectful.

Service users may not themselves be carrying out the research if they are active in steering it in some way, but they will be setting the agenda, designing the project and deciding on the questions and topics to be addressed by the research. Ideally service users will be interviewing people, since we believe that this can lead to better outcomes (see below), but they can also be taking part in analysing, writing up and disseminating the results. Let us not forget that service users may already be researchers (and vice versa!).

We believe that a key element of user-led research lies in questioning the research process. Research can – and often is – done to people rather than with them. Our work starts in a different place, recognising people as experts on their own experiences, valuing and respecting those experiences and their meanings to individuals, and attempting to involve people in research in ways which are sensitive to their strengths and needs.

As our work has progressed we have moved the boundaries of this, and have come to undertake research very much as a joint process, involving participants in commenting on the findings before they are published and sometimes in listening to or reading through their own interviews. We also believe in keeping people informed about the research whilst it progresses, as well as when it is published. Many of us have been interviewed for someone else’s research, and never heard any more about it. This can feel disrespectful and can be painful, particularly if the research involved revealing personal information. Throughout the main Strategies for Living research, we sent people updates and newsletters that kept people informed about our progress. This was particularly important when we fell behind in our deadlines! In similar ways, our supported researchers involved and informed their participants.

We have aimed to take a person-centred approach to research and to mental health, going beyond a narrow focus on mental health services to consider the context of people’s lives, and taking into account people’s mental, physical, emotional and spiritual needs. This includes building flexibility into the work of the project, in order to be able to meet people’s needs and strengths, and to allow for periods when people are having particular difficulties or are not able to cope – including ourselves.

The approach we have taken to research falls under the move within social and disability research context towards ‘emancipatory’ research.

Undertaking emancipatory research has been part of the survivor movement’s project of survivors speaking and acting for themselves; improving their lives and liberating themselves from an oppressive psychiatric system; of changing and equalizing relationships between researchers and researched, and developing survivors’ own knowledge collectively (Beresford and Wallcraft, 1997).

In the book, Doing Disability Research, Barnes and Mercer (1997) say that emancipatory research in the disability context should be enabling rather than disabling, and that it should be ‘reflexive’ and self-critical. For the research to be ‘reflexive’ we need to honestly examine the ways in which our identity as researchers affects the research we do and the interpretations we make of that research.

One way of potentially reducing the imbalance of the power relationship between the ‘researcher’ and the ‘researched’ is for key aspects of their identity to be shared. In these projects, all of the researchers, interviewers and interviewees shared one thing in common: their experience of mental distress and/or use of mental health services. Our research is as much about our own experiences as it is about the experiences of others, in that we too are living with, or have lived with, mental distress (Vernon, 1997, Beresford and Wallcraft, 1997). In this respect, disability research is following trends in social research where it has become commonplace to match interviewers to the interviewees’ culture, ethnicity and/or gender. This does not remove the power differential between two people where one is the interviewer and the other the interviewee, but it challenges the conventional ‘objective’ approach to research. It accepts that our identities, as interviewers, can have an effect on the interviewing process.

The way in which the core research project arose (out of the current concerns of mental health service users and survivors, but also within an established user-led framework at the Mental Health Foundation) also reflects our concern to challenge the social relations of research production, i.e. between the researchers and the researched, and, crucially, concerning who benefits from the research.

In addition, as users of mental health services, we and our interviewees may have had many difficult experiences of being ‘interviewed’ in the interests of mental health services, which add another potential layer of difficulty to the interview situation. In this project we wanted to know if we would be able to ameliorate this situation in any way, and enable people to open up about their experiences and views, by virtue of sharing some part of our interviewees’ experience. We identified ourselves as users/survivors of mental health services in the information sent to the people we interviewed, and reiterated it as we introduced ourselves in person.

Service users and survivors have for some time now expressed frustration with traditional research. Academic and clinical research is caught up with investigating the causes of disorder, or the effectiveness of drug treatments, and rarely with things that matter on a day to day basis to people experiencing mental health problems. So, one key concern is the preoccupation of traditional research with topics and interventions that hold little value for service users. Another is the methodology. The ‘gold standard’ of clinical research is the randomised controlled trial (RCT). This approach has a number of limitations, although it is the dominant model in health services research, and continues its ascendancy through such frameworks as the National Institute for Clinical Excellence (NICE) and evidence-based medicine (EBM). One limitation lies with its essentially fragmentary rather than holistic, approach. It assumes that effectiveness can be measured by symptom alleviation and has the potential to overlook issues of considerable importance to people.

A further concern is about the ethics of EBM and of related research. Evidence-based practice might not be contentious if we could all assess and measure the outcomes of an intervention in a similar way. However, this is rarely so in psychiatry, where the internal experiences inherent in mental health problems, such as voices or delusions, are not amenable to objective measurement. Diagnoses themselves are contentious and based solely on personal accounts and observation. Outcomes, such as quality of life, may defy definition.

Similarly, is it acceptable to ‘involve’ people in research as participants without fully informing them of the implications, the research purpose and/or the potential dangers of the intervention?. Many conventional research studies are carried out in this way, despite the existence of Ethics Committees – which tend to be dominated by clinical academics and professionals concerned also with the benefits of scientific research, and tend to take a paternalistic approach towards the involvement of service users in research rather than what could be a potentially empowering one.

The current emphasis on evidence-based medicine and the need to demonstrate measurable outcomes results in a narrow understanding of illness and treatments, one that frequently fragments experience and reduces the person to a disease or a cluster of symptoms. Our aim is to challenge the scientific emphasis of this approach and to assert that the evidence from service users is equally valid.

The evidence in ‘evidence-based practice’ is generally based on conventional understandings of scientific evidence: predominantly the results of randomised controlled trials (RCTs) of medical treatments and interventions. There are limitations to the over-reliance on this kind of evidence. It is based on the careful selection of patients for the experimental conditions of an RCT, conditions that do not reflect the true complexity of individuals. These may not be appropriate ethically for all forms of intervention and (usually) do not take service user concerns into account. In particular this form of evidence often does not take account of the cost to individuals of the impact of treatment.

This is an issue of particular concern in mental health where, for example, the unwanted effects of medication are the main cause of people ceasing to take their medication – yet treatment compliance is one of the primary themes of the Government’s current drive to reform the Mental Health Act (1983). (According to one Government minister, ‘non-compliance is not an option’). In a sense it demonstrates the potential shortcomings of some kinds of evidence, whilst at the same time proving policy fallible; if treatment compliance were that important an issue, would it not be more logical to seek a greater understanding of the reasons for non-compliance? This is a curious dilemma; on the one hand, the conventional collection of evidence in this case masks key issues that would lead to a greater understanding of people’s behaviour. On the other hand, do we – as service users – want to collect or provide better evidence to support a policy that will lead to further coercion? Nevertheless, it is important for the unwanted effects of medication to be accounted for and more widely acknowledged, if we are to put the case for greater understanding of, and a say in, our use of medication.

With the involvement of service users in a research study comes the ability to access others; and, in particular, to know how to access people from marginalised groups, such as homeless people, black and minority ethnic groups, and people who avoid services. There is substantial and growing evidence that a shared identity can have a beneficial effect on the willingness of people to respond to research, and their openness in interview situations. As stated by Diana Rose, in connection with her experience of user-focused monitoring of services:

We would argue that having users interview other users is conducive to an open and relaxed atmosphere. Another service user is independent and would not, for example, be perceived as having the power to alter the services a person receives should they voice criticisms (Rose et al, 1998).

This issue is touched on above, but it is worth emphasising that people are rarely prepared to criticise a service to someone they perceive to be providing that service if they fear losing it. Patient satisfaction surveys have frequently come under criticism for their tendency to report artificially positive views. The independence of the interviewer and the research, therefore, is crucial to developing a potential for change. Rose (2001) states that user interviewers gain a more valid picture of using community care and hospital services, and satisfaction with those services, than professional interviewers. She quotes from research that has demonstrated these differences by comparing professional and user/consumer interviewers. These studies show that users are more likely to make critical comments to client interviewers than they are to professional interviewers

The other issue about independence is perhaps a more interesting one. Research that is tied to services and treatment interventions may overlook some of the lifestyle elements that people value in living and coping with mental distress. The value therefore of this kind of independence is that it has the potential for broader issues to be taken into account, and for new directions to be discovered. In our own research, we enable people to talk about a wide range of different lifestyle issues as well as treatments, therapies and supports. As a result of discovering considerable interest amongst service users in religion and spirituality, we developed a whole strand of work around this theme and have continued to attract interest and enthusiasm from people in it (see, for example, Nicholls, 1999; Mental Health Foundation, 2000: Foskett et al, 2002).

User-led research enables us to re-assert the value and significance of the expertise we have gained through experience, and to place that as central to the research ideology. In the invalidation of people deemed to be mentally ill or mad, society loses a vital part of the language and meaning of madness and distress. In re-claiming this meaning, we validate ourselves along with our meanings and explanations of mental health, illness or distress.

Related to this is the opportunity user-led research affords us to explain and chart mental distress and strategies or supports from a user/survivor perspective, laying some of the groundwork for theoretical frameworks coming out of direct experience/from users and survivors (see, for example, Foskett et al, 2002).

We may ask different questions in user-led research, but do we obtain different answers?

Have we made new discoveries, found new strategies or new explanations? Do we obtain new answers to the same or similar questions asked by other people? These questions are not easy to answer. However there is some evidence to suggest that we do open up new ideas or different approaches – perhaps we have a greater openness to considering different or difficult themes (eg. religion and spirituality, a holistic approach). Secondly, we have found or placed a different emphasis on different things: less on drugs and /medical treatments, and more on the role and value of people and peer support (the importance of support from others with similar problems or in similar circumstances can be vital, even life-saving). Finally, the language we use opens up new understandings – is a diagnostic approach helpful? Or is it more relevant to think in terms of the lived experience of mental distress: managing difficulties or finding strategies, acknowledging the need for support and the stigma of services and diagnoses.