Use your experience to shape our research
Involvement of people with lived experience, shaping and guiding research, makes our research questions more relevant, participants have a better research experience, and research is more likely to be translated into effective practice.
One of the ways we can involve people with lived experience is by joining our lived experience advisory panels or research theme groups.
We call Patient, public and carer involvement 'PPI', and Professor Kathryn Greenwood talks to PPI coordinator, Lucy Walsh about the impact of 'PPI' in research and how it has improved the engagement in Early Intervention Services. To listen or view, please click here
Once a study or research clinic has funding, we may also set up a Lived Experience Advisory Panel (LEAP), made up of PPI Advisors with relevant lived experience, to inform the research throughout the study or clinic.
Some examples of the work we do at LEAPs include:
- Looking at patient information sheets
- Making suggestions about recruitment
- Looking at the wording of patient leaflets
You don’t need to be an expert on mental health or research to join a Lived Experience Theme Group or LEAP - it is your opinion and lived experience of mental health conditions that count. Researchers really value the contributions that PPI Advisors make and research is enriched by this process.
Research Theme Groups, which cover a range of mental health conditions and diagnoses, are attended by PPI Advisors with lived experience of that particular area of mental health.
Researchers attend at the early stage in their research to ensure PPI involvement from the beginning. The group may discuss the research broadly, for example, what PPI Advisors think of a study, or it may be more specific, for example the wording of a question. How often a theme group meets depends on the number of related research studies, but generally they are held every few months.
Our Youth PPI Cafes shaping research
Patient and Public Involvement (PPI) in research is about research being carried out ‘with’ patients and the public, rather than ‘for’ them. It seeks to improve research, by involving people with their own mental health lived experience. We have created the PPI Youth Café, to give young people a space to have a real input within current mental health research that affects them. We try to meet once a month with a research to discuss their project. We have two cafes:
- one for 16–25-year-olds and
- one for 11-15 year-olds.
How the cafes shape research
The sessions will focus on different studies of interest we would like to discuss as a group.
In the past we have explored topics such as
- the psychological impact of COVID-19 on young people
- using VR technology to combat school phobia
- the co-experience of anxiety and hypermobility
- ways to improve the CAMHS discharge process
Each session will involve anything from discussing the research question, looking at the resources used, to thinking about the phrasing and wording of questions/ handouts. You will be given the opportunity to share your opinions and make your own individual contributions to different research studies that are centred around young people. We will feedback any constructive comments and views to researchers, to help positively shape the way their studies are carried out.
Are you 11-15? We want to hear from you!
Join us for a session, on
Saturday 15th March,
11am-3pm,
Sussex Education Centre, Hove,
where you’ll have the chance to learn more about how you can impact mental health research...
We are holding an in person event for young people to start up our 11-15 Youth Café!
You’ll hear from a researcher and discuss your opinions on their research.
We’ll also have a session where you can shape what future sessions will look like with your opinions.
We will provide pizzas, snacks and refreshments and you will receive a £25 voucher for attending!
Who's Eligible?
Those aged 11-15
Live in Sussex
Have lived experience of mental health (this can be personal experience or through a friend or family member)
Contact:
E: spft.
Instagram: @theyouthppicafe
Do you have lived experience of mental health difficulties or experience of caring for someone who does?
Do you live in Sussex or do you have experience of using Sussex Partnership NHS Foundation Trust (SPFT) services?
Would you like to use your lived experience to shape mental health research in Sussex?
If so, we would love to hear from you!
The Patient and Public Involvement (PPI) Team are looking for people with lived experience of mental health difficulties to join our group of lived experience advisors.
- Research cannot be funded without lived experience input, so your role is vital.
- You will be paid for your time.
- Our areas of research include: Approaches to Involvement and Recovery | Brain and Body | Children, Young People and Parenting | Dementia | Mood and Anxiety | Psychosis | Eating disorder
If you would like to know more, please get in touch
with the PPI Team via email: InvolvementInResearch@
If you would like to learn more about how you can get involved and help shape research, get in touch:
- Email: spft.
involvementinresearch @nhs.net - Telephone: 0300 304 0088 (please leave a message for the PPI Team)