EQUIP: Building the skills of service users and carers to become involved in research
By Alison Faulkner
EQUIP: ‘Enhancing the quality and purpose of care planning in mental health services’, is an NIHR Programme Grants for Applied Research award led by Professor Karina Lovell and Dr John Baker at the University of Manchester in collaboration with Manchester Mental Health and Social Care NHS Trust, the University of Nottingham and Nottinghamshire Healthcare NHS Trust. The aim of the research programme is to improve service user and carer involvement in care planning in mental health services; it is currently seven months into the five-year award. This article is based on an interview with John Baker, lead researcher for public involvement and engagement on the project and Senior Lecturer in the School of Nursing, Midwifery and Social Work, University of Manchester.
The history of care planning in mental health is that, despite the policy imperatives to involve service users and carers in order to increase opportunities for choice and control over their own care, this frequently does not happen. Indeed, research has found that some service users do not even know that they have a care plan. Involvement in drawing up their care plan can be marginal at best.
From the start of this research, and to reflect the ethos of collaborative care planning, the research team wanted to ensure the meaningful involvement of service users and carers throughout. They applied for an NIHR Programme Development Grant to enable them to (amongst other things) design and run research training in order to give service users and carers the opportunity to collaborate from a more informed basis. The Programme Development Grant enabled the team to devise and run the training prior to commencement of the full Programme Grant, and to use this to develop strong service user and carer collaboration, increasing their capacity to get involved in the research itself.
The training, which has now been run three times, consists of six short days covering: study skills, the research process, qualitative and quantitative research methods, searching and critiquing the literature, statistics and health economics, ethics and governance, and dissemination. The team made it possible for the service users to have full student status, including library cards. However, the course currently holds no credits and is not assessed as it needed to be non-fee paying.
The experience of taking part in the training together created a different environment for researchers and service users to come together. John felt that it changed the relationships between the research team and the service users: it changed the mindset of both so that they could collaborate on the research on more of an equal footing. Service users and carers got to know each other and the research team with whom they might be working in the future. The course and content was very well received by those who attended. All participants reported learning about research, including improved understanding about research design, qualitative and quantitative methods and cost effectiveness.
John said that the training had a ‘massive impact’ on the whole Programme Grant. Two service users and one carer became co-applicants on the grant, two service users are employed as part time research assistants, and others sit on steering groups for the different cohorts, or comment on documents. An extra training day was arranged for the group to comment on the primary outcome measures to be used in the research. As a result of their feedback (that none of the measures was fit for purpose), the research is now developing its own PROM (Patient Reported Outcome Measure) as part of the programme. Other service users and carers who participated in the training course have become involved in other research projects within the Trust or the University.
There were a few challenges along the way. One was the discovery that they needed to make the training materials accessible to people with visual impairments, and with limited computer skills. They also encountered difficulties negotiating the University’s financial procedures for paying service users and carers in cash on the training days. One of the main learning points was to avoid raising people’s expectations about potential opportunities for involvement or employment. They found it was important to ensure that participants understood the long lead-in times and uncertainties involved in getting research projects off the ground, and to find other ways of sustaining people’s interest in the meantime.
The training has been publicised by the Mental Health Research Network (MHRN) and by NICE as an example of good practice, as a result of which subsequent courses attracted participants from further afield and were oversubscribed. A series of shortened two-day courses was commissioned by the MHRN. John feels that they have tapped into an unmet need: many people want to access this kind of training in research but there is no obvious funding stream to enable it to happen.
The team are hoping to make the training materials available online as an e-learning package and in book form.
The EQUIP project is funded by the NIHR under its Programme Grants for Applied Research Programme (RP-PG-1210-12007).