We need user-led research more now than ever before… Alison Faulkner Independent Service User Researcher & Trainer

We need user-led research more now than ever before… A few caveats… Research agenda of service users/survivors Changes taking place in the research world The role of the mental health charities What is the way forward for user/survivor research?

1. A few caveats… This is my own perspective Intended as a think-piece Based on my experience of the mental health research world Quite a lot of questions

A continuum of ‘involvement’ Consultation Collaboration Control Researcher-led User-led Joint Let us first remind ourselves of the involvement continuum – from consultation with the public/with service users on the left, through collaboration to user/public control on the right. Collaboration is what we are told we are doing when we become involved in research projects essentially designed or conceived of by clinical academic researchers. Control is not something that is common for service users, although it does happen and is happening. Consultation is all too common, in that it can be tokenistic and without any accountability.

Arnstein’s ladder of participation Citizen control Delegated power Partnerships Placation or tokenism Consultation Information Community development Arnstein, 1971. A ladder of citizen participation. Journal of the American Institute of Planners 69, 216-224. Community engagement

2. What is the service user/survivor research agenda? Research priorities Active participation in the process Asking different questions / getting different answers Methodology? Theoretical underpinnings Ethical practice Participation in the process Feedback to participants Change These priorities are based on a number of consultations I know about or have been involved with, the wide range of work I have been involved in and on research I conducted myself for the report ‘The Ethics of Survivor Research’. SLAM / SURE consultations The strategic review of mental health NHS R&D Leeds University seminars

2b The NHS R & D Strategic Review of Mental Health: priorities identified by service user panel support for full involvement of service users in the research process race equality user-defined outcomes holistic research approach research reviews to be more inclusive: to include ‘grey literature’ social approaches to mental health – moving beyond and outside of the medical model researching positive risk management self-management (as against ‘self-help interventions’ which do not redress the balance of power) evaluation of user-controlled services research into models of user involvement

3. Changes taking place in the research world ‘Best research for best health’: the new R&D strategy for England NIHR UKCRC, UKCRN The Research Networks Working with industry The Cooksey Review Review of RAE I am unable to speak with great authority on all of these developments, so have confined myself to the first few.

3a Best Research for Best Health: A new national health research strategy Our vision is to improve the health and wealth of the nation through research. We aim to create a health research system in which the NHS supports outstanding individuals, working in world-class facilities, conducting leading-edge research, focused on the needs of patients and the public.

3a. Best Research for Best Health: A new national health research strategy Objectives Expand and build a world-class NHS research infrastructure focused on delivering benefits to patients and the public Contribute to international excellence in experimental and translational medicine and innovation in healthcare Build on our reputation as a leading country for publicly funded research Become a leading country for conducting clinical research in partnership with and for industry Develop legislation and guidelines that create a vibrant and efficient research environment Respect ethical principles for health research. The main changes proposed by the strategy are: To alter the funding arrangements that have developed historically within the NHS where a large proportion of monies have ended up funding service provision To promote research amongst all clinical professions as a real alternative, creating incentives and a (virtual) National Institute for Health Research; To streamline some of the bureaucracy that has developed around getting research off the ground To promote relations with industry, ensuring that industry can make better use of NHS research facilities and NHS services and patients. NB the consultation stage did not mention user/public involvement at all, other than as participants in clinical trials. It was persuaded to do so in the final draft by the extent and nature, presumably, of responses to the consultation draft. With this clear commitment to public involvement in research, it is concerning that there is so little focus on the importance of public involvement and how this can assist in taking forward the aims and objectives of the research strategy. The emphasis is on the involvement of patients as participants in trials, rather than as partners with researchers in the design and planning of research. If the strategy is to achieve its’ aims, it is vital that service users and carers are actively involved in the research process. The strategy needs to provide a clear and strong lead on public involvement, to encourage researchers and research funders to recognise the importance of such involvement. if active public involvement in research were embedded into the mainstream of research practice it would contribute towards improving levels of public confidence and understanding of research as well as to the quality, relevance and acceptability of research. Research that is more relevant, appropriate and acceptable to participants is likely to encourage greater participation in research. Without greater public involvement, it will be difficult for the Department of Health to fully deliver in providing research for the benefit of patients and the wider public. Another telling piece of information includes the job descriptions for patient and public involvement reps throughout the research network, part of whose remit is to encourage patient involvement in clinical trials.

3b The UKCRC “A partnership working to establish the UK as a world leader in clinical research, by harnessing the power of the NHS” UKCRC's aim is to re-engineer the environment in which clinical research is conducted in the UK, to benefit the public and patients by improving national health and increasing national wealth. The UKCRC’s strength is that it brings together the major stakeholders that influence clinical research in the UK and particularly in the NHS. The UKCRC brings together the key organisations that shape the clinical research environment in the UK. This includes the main UK research funding bodies; academia; the NHS; regulatory bodies; the bioscience, healthcare and pharmaceutical industries; and patients… The UKCRC is also working to engage with patients and the public throughout its activities.

3c The UKCRN … Ensuring that patients and healthcare professionals from all parts of the country are able to participate in and benefit from clinical research 6 Topic Specific Research Networks & 29 Local Research Networks Putting pressure on the RNs to work with industry The role of the UKCRN is to develop a world-class infrastructure to ensure that high-quality research funded by both commercial and non-commercial orgs receives the support it needs to succeed… It offers a ‘rapid access, single point of access’ to the comprehensive healthcare research infrastructure within the UK. A dedicated ‘industry team’ to address the specific challenges and pressures faced by the healthcare industry in successfully delivering their research & d projects through the NHS. The industry team is ‘working closely with the healthcare industries, the DH and NHS Trusts in identifying barriers to the delivery of clinical research in the UK and formulating solutions and strategies to overcome these. Capacity to provide prompt and reliable assessment of study feasibility … Facilitation of study site activation thro the use of standardised agreements Rapid patient recruitment & delivery of high quality data for clinical studies across the full range of medical conditions Guided access for companies to the array of clinical & healthcare research expertise in the UK Accelerated product development…

3c The Mental Health Research Network (MHRN) “Providing the infrastructure to support large scale, high quality research in mental health and social care." 8 regional hubs Adoptions Committee SURGE (Service User Research Group England) Research interest groups To coordinate and facilitate the delivery of large-scale research projects that will inform policy and practice as it develops. To broaden the scope and capacity of research in mental health, including full involvement of service users and carers as well as frontline staff. To help identify the mental health research needs (particularly in health and social care) To develop research capacity through a range of initiatives at a local, regional and national level.

Patient & Public Involvement The new structure…? UKCRC ££ Work with Industry UKCRN This is my particular version of the new structure; my intention is to show the rather thin patient and public involvement lines of engagement compared to the pressures to work with industry. But, in any case, to clarify how each relates to each other. DRN DNDRN SRN NCRN MHRN MCRN Patient & Public Involvement

NHS patients for sale!? Large single funding body distant from patient and service user concerns Emphasis on (participation in) large scale clinical trials Funding follows the patient Networks are set up to encourage large scale trials Strong emphasis on working with industry (at the potential expense of user & carer involvement) A separate dedicated adoptions committee for industry trials Who is keeping an eye on ethics & good practice? Loss of service user research agenda - the emphasis on large scale trials is counter to the interests of most service users who wish to be involved in research as active participants. The methodology can be less conducive to real involvement, can be used to mystify and to dissuade people from involvement. However, the rational argument is hard to counter: certainly the conclusions we reach about the efficacy of drugs are bound to be more certain if based on larger trials. Involvement of service users may well serve to make these trials better, more relevant, more reality-based. The emphasis on working with industry, in the mental health field, is also counter to the interests of many service users who tend to see the pharmaceutical industry as making profits out of our distress. Trials have not, traditionally, taken into account serious concerns of service users taking these drugs in the real world – the unwanted effects of drugs, etc. They have often been poorly designed and not asked some key relevant questions. A separate adoptions committee aiming to fast-track drug company trials does not constitute a level playing field for other research, for example psychological treatments, as well as service user priorities. It is pandering to the drug companies, giving them the opportunity to market new drugs through the NHS. I am not sure who is keeping an eye on the ethics and good practice of this. Are there guidelines for adoptions committee on what sort of drug trials are ok, or are all assumed to be ok… are there guidelines for informed consent about the nature of these trials? Do the same ethical hoops have to be jumped through or not? Some of these are genuine questions, in that I do not know the answers. In our efforts to stay involved in this agenda and in these networks, are we in danger of losing touch with our own agenda and of losing touch with the grassroots of everyday experience that demands research that is meaningful, useful, applied to the lived experience of people at the receiving end of illnesses and services. Yes, there is ‘patient and public involvement’, and yes there is SURGE in the Mental Health RN… but how much more do we have to compromise to be involved? Our priorities do not contribute to the formation of research interest groups, our priorities are not high on this agenda at all.

4. The role of the (mental health) charities Historically important in supporting service user/survivor research – e.g. Mental Health Foundation, Sainsbury Centre for Mental Health; Loss of some strong initiatives (User Focused Monitoring, Strategies for Living); Funding shortages, pressures and biases affecting them too

5. We need user-led/survivor research! To: Stay in touch with and strengthen our agenda Stay in touch with the grassroots experience Ensure research is meaningful, relevant to people’s lived experience But: Who is doing it and where? Who is funding/ who will fund it? Politics vs. pragmatism Language of participation Capacity building Power and empowerment Why user-led research? To stay in touch with the grassroots experience To present and discuss alternative theoretical frameworks for what is going on To identify meaningful questions, meaningful outcomes To identify meaningful interventions To retain the whole person within the research, and not be fragmented into diagnoses and symptoms about which there is limited scientific agreement. It seems to me that we cannot count on this new strategy, this new structure and its motives and drivers to take us with it… How else are we to sustain the service user research agenda than to do our own research. The difficulty is that we need an infrastructure of our own, we need funding and we need capacity building. It is happening. I am fortunate in my work that I travel to many different places and find examples of service users and user groups doing their/our own research in all sorts of surprising places. The most recent being the forensic mental health services. But we still need more, we need to challenge the current language of participation, we still need more power and empowerment. I will leave you with a quotation from a survivor research and activist, Viv Lindow.

Arnstein’s ladder of participation Citizen control Delegated power Partnerships Placation or tokenism Consultation Information Community development Arnstein, 1971. A ladder of citizen participation. Journal of the American Institute of Planners 69, 216-224. Community engagement

Why research? “Research has its part to play in developing solidarity among psychiatric system survivors, and helping to raise the expectations of those who have been ‘educated’ to live with an unacceptable quality of life. Survival research can be a small but key part in the move to seize freedom within an oppressive and excluding society.” Viv Lindow, Survivor Researcher