If you are a researcher looking for help with patient involvement in your study, there are a number of services we offer which may help:
The NIHR Maudsley Biomedical Research Centre has launched a new Race and Ethnicity Advisory group as part of its commitment to keeping principles of Diversity, Inclusion and Equality at the heart of its activities.
What is the NIHR Maudsley BRC Race and Ethnicity Advisory Group?
The group offers researchers an opportunity to consult with individuals from under-represented ethnicities who are passionate about mental health research and race equality, to help make improvements in conducting their research.
How often does the READ group meet?
The group meets once every month at the Institute of Psychiatry, Psychology, & Neuroscience in Denmark Hill, London.
The READ group can:
The group can offer cultural and ethnic insights into all aspects of research. Examples of what the group could help with include, but are not limited to:
- Early-stage research – developing funding applications which consider the voices of under-represented ethnicities.
- Material preparation – reviewing participant-facing documents, questionnaires, fliers, websites, etc. and reviewing them for inclusivity, relevance and appropriateness.
- Research proposals - Assessing whether a research proposal may or may not be attractive to different ethnic groups, and why.
- Recruitment - Supporting recruitment strategies to reach out to minoritized communities.
- Promotion - Advising on the dissemination and sharing of findings with the wider community.
- Analysis - Providing context to unexpected findings, or accounting for ethnic differences in outcomes.
The READ group is available to assist on different levels of involvement, from providing feeedback over email to working in-person with the research team over a sustained period of time.
If you are interested in applying to work with the READ Group, please fill in the form at the page below:
Race and Ethnicity Advisory Group webpage and form
Email: Read-edi@kcl.ac.uk
The Service User Advisory Group (SUAG) is open to researchers from the NIHR Maudsley Biomedical Research Centre (BRC) only.
What is the NIHR Maudsley BRC Service User Advisory Group?
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.
How often does the SUAG meet?
The group meets once every two months on Wednesday afternoons at the Institute of Psychiatry, Psychology, & Neuroscience in Denmark Hill, London.
What sort of things does the SUAG review?
The SUAG is used to seeing research projects of all shapes and sizes, and at a variety of different stages. Most people tend to come to the SUAG before applying for funding, or before writing an ethics application in order to get advice on data collection procedures.
What is the remit of the SUAG?
The SUAG reviews any study which is linked (in some way) to the NIHR Maudsley BRC. We have made exceptions in the past, but we now have quite a lot of people wanting to present – so we have to prioritise BRC studies.
Why should I use the SUAG?
Using the SUAG can improve the rigour, quality and relevance of your research. It can also alert you to potential pitfalls which may hinder your project once it is underway (e.g., “I have developed a great intervention but no-one wants to use it!”). Most people who use the SUAG find it to be a rewarding, fun and interactive experience.
I am applying for funding and I need to put something about ‘Patient and Public Involvement’ – can you help?
The SUAG is an example of Patient and Public Involvement (PPI), which is a requirement for most funding bodies. We will always recommend using the SUAG as part of a wider PPI strategy. It will not satisfy all of your PPI demands, but linking with the SUAG early can help you build relationships that are useful in developing your PPI strategy.
How do I contact the SUAG? Jo Evans Email: SUAG@kcl.ac.uk Tel: 0207 848 0334
The Feasibility and Acceptability Support Team for Researchers (FAST-R) offers fast and easy access to people with experience of mental health problems and their carers who have been specially trained to advise on participant-facing documentation (e.g., information sheets, consent forms) and lay summaries of protocols). FAST-R reviewers spend one to two hours reviewing each project and will cover as much as possible in this time.
The FAST-R team can:
- Offer expert advice about patient information sheets, consent forms and recruitment strategies
- Help speed the regulatory approval process
- Flag up potential stumbling blocks to ethics, R&D approval or adoption to Clinical Research Network portfolios
- Give researchers enough time to make any necessary changes before the proposal is considered
- Provide feedback to researchers within seven working days of an application being made.
Using the FAST-R service is free of charge. But feedback is invaluable. The team asks users to let them know the outcome of funding or ethics applications to help ensure the service is effective. We also appreciate it when our contribution is acknowledged in publications.
How to apply
Researchers can apply to use the FAST-R service as soon as they have a patient facing documents ready to be reviewed. They can apply at any time, the earlier the better. There is no limit to the number of times the service is used, but priority is given to researchers whose documents we haven’t already seen.
All documents requiring feedback should be emailed to fast-r@kcl.ac.uk.
Please note, we are unable to review full-length protocols.
The ADO group is open to all researchers with an interest in the mental health of adolescents aged 12-17.
What is the ADO Group?
This is a meeting for young people aged 12 to 17 with experience of mental health conditions, who have cared for someone with mental health conditions, or has an interest in mental health research. The members take full opportunity to make their views heard and make a difference for other young people and research projects.
The session always includes a fun educational activity and lunch for the members. Participants can bring parents or care coordinators if they prefer.
How often does the ADO Group meet?
One meeting is organised during every three months coinciding with the school holidays. The groups in the Institute of Psychiatry, Psychology & Neuroscience in Denmark Hill.
What sort of things does the ADO Group review?
The ADO Group reviews research projects of all shapes and sizes, and at a variety of different stages. Most researchers come to the Ado Group before applying for funding, or before writing an ethics application in order to get advice on data collection procedures, but other examples of how the ADO Group can help include:
- Commenting on the feasibility of research projects
- Helping researchers with language and jargon
- Assessing whether a project will be attractive to young people or not (and why)
- Reviewing research documents for user-friendliness
- Testing websites, apps and computer games
- Developing a sustainable Patient and Public Involvement (PPI) strategy
- Advising on dissemination and sharing findings with young people
Why should I use the ADO Group?
Using the ADO Group can improve the rigour, quality and relevance of your research. It can also alert you to potential pitfalls which may hinder your project once it is underway (e.g., “I have developed a great intervention but no-one wants to use it!”). Most people who use the Ado Group find it to be a rewarding, fun and interactive experience.
I am applying for funding and I need to put something about ‘Patient and Public Involvement’ – can you help?
The ADO Group is an example of Patient and Public Involvement (PPI), which is a requirement for most funding bodies. We will always recommend using the ADO Group as part of a wider PPI strategy. It will not satisfy all your PPI demands, but linking with the ADO Group early can help you build relationships that are useful in developing your PPI strategy.
How do I contact the ADO Group?
Potential members of the group, as well as researchers who want to get feedback from the group, should contact ado-advisorygroup@kcl.ac.uk.
If you are young person who would like to join the group, please visit this webpage and fill in the form.
The YPMHAG is open to all researchers with an interest in young people’s mental health.
What is the Young Person’s Mental Health Advisory Group?
The YPMHAG is a regular meeting of young people aged 16-25 based across England, with lived experience of mental illness or caring for someone with 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.
How often does the YPMHAG meet?
The group meets every three months on a Saturday either online or in central London.
What sort of things does the YPMHAG review?
The YPMHAG reviews research projects of all shapes and sizes, and at a variety of different stages. Most researchers come to the YPMHAG before applying for funding, or before writing an ethics application in order to get advice on data collection procedures, but other examples of how the YPMHAG can help include:
- Commenting on the feasibility of research projects
- Helping researchers with language and jargon
- Assessing whether a project will be attractive to young people or not (and why)
- Reviewing research documents for user-friendliness
- Testing websites, apps and computer games
- Developing a sustainable Patient and Public Involvement (PPI) strategy
- Advising on dissemination and sharing findings with young people
Why should I use the YPMHAG?
Using the YPMHAG can improve the rigour, quality and relevance of your research. It can also alert you to potential pitfalls which may hinder your project once it is underway (e.g., “I have developed a great intervention but no-one wants to use it!”). Most people who use the YPMHAG find it to be a rewarding, fun and interactive experience.
You can also read our researcher guidelines for more information.
I am applying for funding and I need to put something about ‘Patient and Public Involvement’ – can you help?
The YPMHAG is an example of Patient and Public Involvement (PPI), which is a requirement for most funding bodies. We will always recommend using the YPMHAG as part of a wider PPI strategy. It will not satisfy all of your PPI demands, but linking with the YPMHAG early can help you build relationships that are useful in developing your PPI strategy.
How do I contact the YPMHAG
You can email us on YPMHAG@kcl.ac.uk or visit our webpage.
The Data Linkage Service User and Carer Advisory Group is open to researchers who are conducting data linkage projects using the Clinical Records Interactive Search (CRIS) system.
The 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 and receive feedback and advice from the group.
The group are happy to review projects at a variety of stages- from identifying research priorities and preparing grant applications, right through to disseminating findings. Using the Data Linkage Service User and Carer Advisory Group can help to promote the service user perspective in your mental health data linkage study, as well as improving the quality and relevance of your project. The group is also an example of Patient and Public Involvement (PPI), which can improve the rigour, quality and relevance of your research.
If you would like more information about the Data Linkage Service User and Carer Advisory Group or are interested in presenting at one of our meetings please contact Amelia Jewell (amelia.jewell@slam.nhs.uk).
The Consent for Contact (C4C) register allows patients at South London and Maudsley NHS Foundation Trust to consent to be contacted by researchers if they are a potential match for research studies taking place within the Trust.
We have a major BioResource project underway, collecting biological samples such as blood and urine for molecular analysis and linkage with other study areas.
