Service Users and carers Group Advising on Research
City University London
SUGAR (Service User and carer Group Advising on Research) was established in 2009 to support the engagement, involvement and collaboration of mental health service users and carers in a programme of mental health nursing research. The project sought to ensure public involvement through all stages of the research process and develop meaningful relationships over a five-year period. The user and carer group reflects the rich diversity of London in terms of age, gender, sexuality and ethnic mix and includes people with a range of mental and physical illness, service use and life experiences.
Working collaboratively from the beginning, asking members for suggestions about how to run the meetings and establishing ground rules, the operation and facilitation of the group was based on good practice guidelines on patient involvement, reports within the research literature and from previous personal experiences of the team working with and alongside service user and carer colleagues. On average, 11 SUGAR members and at least three members of the research team attend each meeting. Usually, two research topics are discussed and a range of methods are used to maximise service user and carer input, including presentations, large and small group work, written exercises, mind mapping and discussions.
After the first year, an evaluation survey was jointly designed and implemented and the results discussed and acted upon. After four years, the project jointly designed and undertook another evaluation that has been published in an international peer-reviewed journal. SUGAR members have reported positive experiences and cited involvement with SUGAR as a contributory factor in their personal development and confidence to seek employment. Academic and clinical researchers’ collaboration with SUGAR has seen changes and improvements in research funding applications, have helped address ethical issues and refine and test research methodologies, analyse and interpret findings and inform interventions, recommendations and dissemination.
SUGAR won the Health and Wellbeing category award at the NCCPE's Engage Competition 2014.
For a more in-depth look at this case study, click on the headings below.
- Target audience
- Mental health service users and their family and friends (carers) representing the rich diversity of London in terms of age, gender, sexuality and ethnic mix and includes people with a range of mental and physical illness, service use and life experiences.
- Setting up the advisory board
- The researchers who established the board had been working with service users on a project-by-project basis for a sustained period of time. Whilst this was working effectively, researchers observed that they were overly reliant on one or two services users and that by developing a formal board more could be achieved. Therefore, after reading around the subject, a decision was taken to develop and secure funding for a more sustained advisory board. The researchers began by drawing up a role description (what service users would be expected to do) and person specification (capabilities they needed to be effective). Knowledge of research was not required, but there was a general emphasis on a willingness to learn, capability to sit through meetings, make contributions and to consult with others. Having drawn up these documents they were circulated through the researcher’s networks and through the NHS trust. Sixteen people responded and attended an open day, which provided an opportunity for the researchers to clarify the expectations of the role, to get to know the applicants better and to explore the motivations of the service users who applied. The funding for the project came initially from a research grant and although the project budgeted for eight members, sixteen people attended the open day and all were recruited.
- Support for Advisory board members
- SUGAR members are remunerated for their collaboration and provided with honorary university contracts that allow them access to the library, computer systems and other university services. In addition, an ongoing programme of training and development has been delivered to SUGAR members using a variety of teaching and learning methods to maximise engagement and in recognition of different learning and participatory styles. This includes presentations, mind mapping, large and small group work, working in pairs and self-directed learning. Topics have included using information technology, searching and reviewing literature, communication skills, research methods, ethics and governance issues, research roles and responsibilities, writing, and preseniting results. Members also attend university and other research events. Outside speakers, including leading service user researchers and research network managers, have been invited to speak to members to explain the wider context of public and patient involvement in research. Researchers and SUGAR members share lunch together which provides the ‘social glue’ to the shared endeavours and provides an opportunity for people to get to know each other beyond the focus on research challenges.
- Benefits for research
- From the academic and clinical researchers’ perspective, collaboration with SUGAR has been a great success. Consultation with the service users and carers has seen changes and improvements in research funding applications, with the level of patient and public involvement and engagement (PPI/E) commended and described as ‘exemplary’ by reviewers. SUGAR members have helped researchers address ethical issues and applications to research ethics committees; develop, refine and test research instruments such as questionnaires and interview schedules; refine interventions; recruit staff; analyse and interpret findings; and help disseminate results. The group also provides a fantastic opportunity for PhD and Masters’ degree students to discuss their projects with people with experience of mental distress and service use. Researchers from the UK, Japan, USA, Turkey and Australia have attended SUGAR meetings and established links with members of the group and the academic team.
The model has also been adapted by a team of academics working with patients and carers in kidney care, including haemodialysis and transplants. In 2013, SUGAR received the Highly Commended Award for innovation in healthcare education and training from the Health Education North Central and East London (HENCEL) Quality Awards. Joint presentations and workshops have been given at a number of international and national mental health nursing research conferences and events including a workshop and poster presentation delivered to the International Network of Psychiatric Nursing Research (NPNR) conference in Oxford, England in 2012.
- After the first year, an evaluation survey was jointly designed and implemented and the results discussed and acted upon. This feedback was invaluable to improving the project for participants, in particular leading to firmer facilitation and implementation of the ground rules. After four years, SUGAR jointly designed and undertook another evaluation which has since been published in the USA Journal of Psychosocial Nursing and Mental Health Services. Three members of SUGAR have left to take up employment and cited involvement with SUGAR as a contributory factor in their personal development and confidence to seek employment. The softer benefits include the opportunity to get to know people from diverse backgrounds with diverse life experiences, whilst developing skills in collaboration, analysis and communication.
- Key to making it work
- The operation and facilitation of the group was based on good practice guidelines on patient involvement, reports within the research literature and from personal experience of working with and alongside service user and carer colleagues in earlier research and educational studies. It was important to recognise the different capacities and capabilities of the group and design meetings so that everyone could make a positive contribution. Some people work well in a large group, others don’t. Some people are better at writing and drawing, others at talking. Ensuring that there are different ways for people to contribute is an important part of making a board like this effective.
It was clear from the beginning that the researchers were looking for a long term commitment of up to five years. Contracts were reviewed every year and naturally people are entitled to leave at any point. The challenge is to get members to a stage where they can effectively contribute to research. This takes time. For a non-researcher it can come as a surprise to learn how research works, the timescales involved, the ethical issues, the partners required, the chances of bid success etc. Increasingly now, and particularly after the first 12-18 months, the group requires less pro-active facilitation and has developed it capacity to influence research.
The project is run on approximately £10k per annum, budget headings include: (i) training and development for members, conferences etc; (ii) payment for members and their expertise (based on good practice recommendations from Involve); (iii) room hire and refreshments. University staff time is contributed in-kind.