Research is a core part of the NHS and GMW aim to involve service users in our research studies.
We know from experience that the people who use our services are the true experts on how those services should be developed and delivered. We do all we can to ensure that those who use our services are made aware of the research opportunities that are of particular relevance to them.
We encourage people with personal experience of mental health problems to participate in our studies, so that the people who use our services can benefit from our treatments, give invaluable information to our researchers, make a genuine influence on the support service users receive and help shape the future of mental health services.
Involving service users in Recovery Programme Research
By Liz Pitt
The National Institute for Health Research (NIHR) Recovery Programme Research involves five research projects in Greater Manchester focusing on psychological approaches to understanding and promoting recovery from psychosis. It was inspired by a piece of user-led research looking at service users’ experiences of recovery from psychosis.
The research projects within the Programme were initiated by a group of academics and clinical psychologists led by Professor Tony Morrison, Associate Director for Early Intervention for GMW and School of Psychological Sciences, University of Manchester, including Professor Christine Barrowclough, Professor Richard Bentall, Professor Gillian Haddock, Professor Steven Jones and Professor Nick Tarrier.
Service user researchers Martina Kilbride and I were consulted about the plans for the research, and were invited to be grant applicants responsible for overseeing the service user involvement in the Programme. Additional consultation took place with other local service users.
The service user researchers were also able to collaborate on plans for service user involvement in the research. The experience indicates the benefits of involving service users as early as possible in the research process and the need to ensure that funding is available nationally to enable this to happen.
Plans for involving service users in the Recovery Programme Research were made at three levels. Firstly, the employment of three service user researchers who would be involved in all stages of the research including consultation, recruitment, interviewing and dissemination.
Secondly, the involvement of service user consultants at a project level, according to the needs of individual research projects. And thirdly, the establishment of a Service User Reference Group (SURG) to meet bi-monthly in order to provide on-going service user input into the Programme.
Service users were invited to a launch of the Recovery Programme Research in March 2008. They were identified through existing service user contacts and local service user groups. Efforts were made to ensure that the launch event was accessible to service users.
Fourteen service users were recruited at the launch to be involved as service user consultants. They are now involved in a diverse range of activities, including input into the development of a measure of symptom recovery; input into the development of a Recovery Guide; feedback on the measures being used in research; and feedback on interview schedules used for qualitative interviews.
Service users have also participated in staff recruitment; provided advice about participant recruitment; helped to design recruitment leaflets; and been involved in conducting some qualitative research on what research participants gain from being involved in research.
Experience indicates the benefits of involving service users as early as possible in the research process and the need to ensure that funding is available nationally to enable this to happen.
The SURG meets bi-monthly and provides input into management meetings for the Recovery Programme Research. Service users are reimbursed for their involvement at a rate of £10 per hour plus travel expenses. Service user involvement fees were costed into the budget from the outset.
Involving service users to this extent in a large research programme involves a learning curve for all involved. Advice and support from Tim Rawcliffe, the Service User Development Officer for the Mental Health Research Network (MHRN) North West Hub, has been invaluable.
Plans are in place to interview service user consultants about their motivation for getting involved in mental health research, and their experience of being involved in the Programme. Equal opportunities monitoring will also take place to measure whether the involvement reflects the diversity of service user experience.
The lack of representation from black and ethnic minority communities is already a cause for concern. It is hoped that we can learn from the experience of service user involvement in the Recovery Programme Research in order to extend and ensure more representative involvement in mental health research in the future.
Read Liz Pitt's' Biography (pg 4) and more research news in a Mental Health Research Network's 'People make mental health research possible' leaflet.