The Service User and Carer Participation theme works across the NIHR Maudsley BRC to provide input in five main ways. Our approach to Patient and Public Involvement (PPI) runs through each of these strands. In addition to public involvement in research and strategy, our reflection and evaluation activities are led and conducted by people with lived experience of mental health problems.
Service users are involved in developing our BRC's research strategy and future direction. This has occurred in the following ways:
- Setting priorities for future research through a service user led (and conducted) consultation. This involved consulting with 83 service users and carers across South London. The results are used to shape future research proposals.
- Redevelopment of the BRC website in 2016. Service users provided input on how they would like to read the site as well as its content.
- Service user representatives are full members of all strategy meetings and workshops.
- Leadership of the CRIS system (Clinical Records Interactive Search), via the chair of the oversight committee.
- Providing feedback into BRC funding applications; for example, training and preparatory fellowships.
- Judging award schemes for patient and public involvement.
- Building relationships with local service user-led organisations and providing assistance with the development of their evaluation strategies.
A panel of approximately 30 service users and carers are available to comment on research proposals. We have capacity to assist on approximately 60 research proposals per year.
- The BRC Service User Advisory Group (SUAG) has six meetings a year and can be consulted on research design, scope and methodology.
- The BRC Young People’s Mental Health advisory Group meets approximately every eight weeks and can be consulted for similar purposes, with a focus on issues affecting young people.
- The BRC Addiction Services User Research Group (SURG) is run at the Aurora Project, a local user-led organisation for people with experience of substance misuse. The group have been involved in research projects, teaching and public engagement activities, including film making and media contributions.
- The BRC FAST-R service allows researchers to gain feedback on proposals, information sheets and consent forms. Researchers can submit their work virtually and receive feedback within seven days.
- Researchers from the Service User Research Enterprise are available to provide 1:1 advice for researchers on all aspects of research, including helping them with involvement.
- Guidance (written in collaboration with service users) to help researchers in how to involve lay members in steering committees for clinical trials and other projects.
- Lectures and training on service user involvement to postgraduate students as part of their Research Methods course.
We conduct our own research into Patient & Public Involvement (PPI) which is published as open-access. Examples of service user-led research include:
- Testing the feasibility and usability of an electronic Patient Health Record for monitoring physical and mental health.
- Developing a research register based upon the information in the NHS clinical record, and conducting research on its acceptability and governance.
Our Service User and Carer Participation theme contributes to public engagement within the NIHR Maudsley BRC as do all the themes. We have conducted several public engagement activities:
- Showcasing research in collaboration with local service user organisations, such as the Dragon Café in Southwark.
- An annual NIHR ‘OK to ask’ campaign on International Clinical Trials Day with events in each of the four main hospital sites at which our BRC works.
- A BRC Youth Takeover Challenge, in which young people devised a plan for running the BRC for one day, and interviewed academics and clinicians about their work.
- #MeSearch event for children and young people’s mental health, held at Pop Brixton in February 2016
- Publishing reports of BRC and external events from the perspectives of service users on our website
It is essential to have continuous improvement of our PPI practices to ensure close involvement of service users in governance and research. Our programme of work includes:
- A service user led ethnographic evaluation of service user involvement within our own BRC. This is carried out independently of the BRC and involves observations and interviews. The results will inform present and future strategy.
- An annual online survey of our support infrastructure services (i.e., FAST-R, our Service User and Young People's Mental Health Advisory groups). For example in April 2016 we ran a follow-up survey with researchers who had used out service user research support services over the past two years. The annual survey results will be available in advance of International Clinical Trials Day.
- We will run an equivalent survey with service users and carers who have been involved in BRC projects and programmes, to map the benefits which people may get from being involved.
- Collaborating with PPI leads within other BRCs to share ideas, information and good practice.