To make research relevant, we involve service users and people who care for or support those with mental health disorders. Involvement is critical to improving research we carry out, and helps researchers consider the patient’s perspective. You don’t need any particular knowledge or skills to help shape our research, just a willingness to give your opinion from your own experiences.
There are many ways people can take an active role in the NIHR Maudsley Biomedical Research Centre (BRC), from helping to design research projects, to taking part in advisory groups or advising on research documents and procedures:
Setting BRC research priorities
From November 2014 to February 2016 we visited service user groups in South London and Maudsley NHS Foundation Trust (SLaM), compiling a list of priorities for biomedical research. This piece of work was co-led by service users throughout. It was written up as an editorial for the Journal of Mental Health, freely available online.
Service User Advisory Group (SUAG)
The NIHR Maudsley BRC Service User Advisory Group (SUAG) is a regular meeting of people with lived experience of mental illness, all of whom have an interest in mental health research. Researchers are invited to present their project / programmes to the group and get feedback. The group meets once every two months on Wednesday afternoons between 4 and 5.30pm at the Institute of Psychiatry, Psychology & Neuroscience in Denmark Hill, London.
If you are interested in presenting to the group or becoming a member, please contact Jo Evans on SUAG@kcl.ac.uk.
FAST-R stands for Feasibility and Acceptability Support Team for Researchers. This means researchers send the FAST-R service documents to review and we respond with our feedback within seven working days. The FAST-R service receives a wide range of documents from researchers; recently these have included research proposals, study protocols, patient information sheets, consent forms, leaflets, posters and questionnaires.
If you are a researcher and would like to know more, please read our guide to using the FAST-R service, which explains how to apply and how applications are processed.
Young People’s Mental Health Advisory Group - https://ypmhag.org/
The Young People’s Mental Health Advisory Group (@YPMHAG) is currently managed by SURE (Service User Research Enterprise) and the NIHR Maudsley BRC. The group consists of 16 - 25 year olds with personal experience of having used mental health services or caring for someone who has. The group meet every six to eight weeks on a Saturday in central London. We usually advise two or three researchers on their projects from a young person’s point of view during each meeting and also work on our own projects too to raise the importance of involving young people in mental health research.
If you are a researcher and would like to know more, please read our guide to accessing the Young People's Mental Health Advisory Group, which explains how to apply and how applications are processed. The group have also produced guidelines for researchers visiting them.
Adolescent Mental Health Research Advisory Group
This group is for young people aged 12 to 16 who have used mental health services or have an interest in mental health research. One meeting is organised during every school holiday, giving participants the opportunity to make their views heard and make a difference for other young people. The session always includes a fun educational activity and lunch. Participants can bring parents or care coordinators if they prefer.
Potential members of the group, as well as researchers who want to get feedback from the group, should contact firstname.lastname@example.org
Addiction Service User Research Group (SURG)
SURG is a collaboration between the Addictions Department at the Institute of Psychiatry, Psychology & Neuroscience and the Aurora Project which is a peer mentoring service for people who are drug and alcohol users in Lambeth. SURG has 11 core group members, all drug and alcohol service users, who meet monthly to provide advice and support to those undertaking studies relating to addiction.
Data Linkage Service User and Carer Advisory Group
‘Data linkage’ means joining two or more independent databases that share a variable at an individual record level – for example, someone’s GP record and their hospital record will share a unique ‘NHS number’. The Data Linkage Service User and Carer Advisory Group is a regular meeting of people with lived experience of mental illness, all of whom have an interest in mental health research involving data linkage.
The group meets on a quarterly basis and researchers are invited to present their project, where they will receive feedback and advice from the group. If you are interested in becoming a member of the group and would like some further information, please contact Amelia Jewell (email@example.com) or Megan Pritchard (firstname.lastname@example.org).
MALADY Dementia Service User & Carer Advisory Group
The Maudsley Dementia service user and carer group, MALADY, provides invaluable experience-led insight and advice to our researchers in a range of ways, including identifying research priorities, meeting researchers to improve study design and delivery, providing advice and troubleshooting for research studies underway in the BRU-D, and advising on the best ways to communicate about our research. For more information about the group, email Samantha Sharp at Samantha.email@example.com.
Members of the NIHR Maudsley BRC also link with the Service User Research Enterprise at King's.
Our strategy for patient and public involvement outlines our approach to involving people in shaping our research and development of our facilities and infrastructure. If you are a researcher and would like general advice on involving patients in your research, please read our guidelines on involving service users and carers in research.