Learning from Experience: involving service users in research

1. Learning from Experience: involving service users in research Alison Faulkner Survivor researcher

2. User involvement in research • Introduction: personal perspective • Why involve service users? • Barriers to involvement • Examples from practice • Some dilemmas

3. What do we mean by user involvement in research? Active involvement in research is different from simply taking part in a study. It is about research that is done with members of the public, not to, about or for them. (S. Buckland et al, 2007) For example: • identifying and prioritising research topics • being part of research advisory groups and steering groups • undertaking research projects • reporting and communicating research findings.

4. Why involve service users in research? • Making research more relevant to people & practice • Offering a different perspective • Frustration with traditional research • Recognising the value of ‘expertise by experience’ • Seeking change / improving services • Improving the quality of research • Skills, confidence and empowerment • Challenging models of understanding • Democratic/ethical provision of health care & use of public funds • Policy & funding requirements

5. “I am tired of being talked about, treated as a statistic, pushed to the margins of human conversation. I want someone who will have time for me, someone who will listen to me, someone who has not already judged who I am or what I have to offer… I am waiting to be taken seriously”

6. ‘I guess my hope is that they’d feel less “used” and might find the …research process increasingly answering and exploring things that felt useful to them’ • ‘I hope they could gain a genuine place in bringing about progressive change in service delivery. I would hope they would gain in terms of education, personal development, empowerment, moving into employment’

7. Some policy initiatives (UK) • Patient and Public Involvement in the NHS (DoH, 1999) • Research and Development for a First Class Service (DoH, 2000) • Research Governance Framework for Health and Social Care (DoH, 2005) • Best Research for Best Health (DH, 2006) • National Institute for Health Research (2006 - )

8. Barriers to involvement • Difficulties understanding the concept • Predominant notions of “active doctor - passive patient” • Control of the research agenda • Who and how to involve? • Practical issues: e.g. resources, training, payments • Lack of evidence for its value/impact • Questions about rationality • Questions about objectivity & bias

9. Examples from practice Refer to handout • ‘Strategies for Living’ Mental Health Foundation • SURE, Institute of Psychiatry • Learning the Lessons: evaluation of community services for people with PD • User-Focused Monitoring (UFM) • Rethink Recovery Narratives research

10. Features of good practice • Clarity and transparency • Training • Support • Payment & other incentives • Budget • Involvement from the beginning • Constructive negotiation • Accessible language & information

11. Dilemmas of user involvement • Power & empowerment… • Motives & incentives • Finding things out vs. making change • Medical model • Funding • Methodology • Capacity building

12. Keeping the space Support Respect Accessibility Resources Good service user involvement Flexibility Honesty, transparency Information and Communication Training Payment

13. Keeping the space DISSENT DIFFERENCE Good service user involvement DISTRESS

14. Keeping the space Empowerment New knowledge and theory Evidence – and what counts as evidence Good service user involvement Sharing the research gaze Making change happen Skills

15. “Helping with this work made me realise that my thoughts and ideas could be valuable. My self-esteem has returned and I am continuing to re-establish my identity once more. It has helped me to realise that I need to get back to work and that I am no longer a ‘lost cause’. “As a survivor with extensive experience of using mental health services I am committed to meaningful user involvement.This evaluation has been a way in which I can put my life experience to good use. The work has been an important part of my life for the last few months. I have developed skills in interviewing and research… It has helped my self-esteem and confidence enormously … The sense of safety I’ve found working with other survivors in this close-knit team has had positive effects in many other areas of my life and I feel much better equipped to continue this type of work in the future.”

16. Some references • Faulkner, A. (2004) The Ethics of Survivor Research: Guidelines for the ethical conduct of research carried out by mental health service users and survivors. Bristol: Policy Press on behalf of the Joseph Rowntree Foundation. • Service User Research Group England (2005) Guidance for Good Practice: Service user involvement in the UK Mental Health Research Network. London: UK MHRN. • Crawford, M et al (2007) Learning the lessons: A multi-method evaluation of dedicated community-based services for people with personality disorder. National Coordinating Centre for NHS Service Delivery and Organisation R&D, Department of Health. • Faulkner A, Gillespie S, Imlack S, Dhillon K & Crawford M (2008) Learning the lessons together. Mental Health Today Vol. 8 (1), February. • INVOLVE (2007) Public Information Pack. www.invo.org.uk • INVOLVE (2004) Involving the public in NHS, public health, and social care research: Briefing notes for researchers; as above. • Direct Impact Service User and Carer Research Group (2004) Involving Service Users and Carers in Audit, Evaluation and Research and Other Projects to Improve and Develop Services. South West Yorkshire Mental Health NHS Trust.