What is PPIEP?
Everyone benefits from research. Research provides evidence about what works best. Patients, carers, people who use social care services and health & social care professionals all use this evidence to make decisions about treatments and care.
When the public gets involved in research, they work alongside researchers to help shape:
- what research gets done
- how it’s carried out
- how the results are shared and applied in practice.
People with experience of a mental health condition, service users and members of the public can all help to improve research into mental health.
Involvement
Involvement is research done with or by patients and the public, not to, about or for them. It is about working collaboratively with patients and the public and sharing decision-making in the research process.
Examples of public involvement include:
- acting as members of a project advisory or steering group.
- acting as joint grant holders or co-applicants on a research project
- identifying research priorities
Engagement
Engagement focuses on raising awareness and sharing research knowledge and findings.
Examples of engagement include:
- contributing to academic reports and publications
- attending public science festivals with discussions on research
- raising awareness of research through giving interviews for television programme and newspapers, writing blog posts and taking part in videos that explain study involvement
Participation
Participation is about people giving formal consent and taking part in a trial or study.
Examples of participation include:
- completing a questionnaire online
- taking part in a clinical trial at a clinic
- trialling a new drug or treatment at home.
This video, produced by MQ Mental Health Research, features people with lived experience, and carer representatives from Liverpool. They speak about why they want to take part in mental health research and their hopes towards the future of this research.
Coproducing research: Experiences of researchers and public contributors
This video below, produced by MQ Mental Health Research, features researchers and PPIEP colleagues from our MH-TRC demonstrator site MHM MTC in Birmingham and their partner, the McPin Foundation. They speak about the EPIcare project, which seeks to improve treatments offered through Early Intervention in Psychosis services and how they involved a lived experience advisory group to help develop an app which supports people with psychosis. They also speak with a peer researcher working on the young people’s programme, describing how they bring lived experience into their work.
Why our researchers want your help
Feedback from our researchers about the importance of patient and public involvement include:
- gives them confidence and motivation
- stimulation of new ideas
- broadens their knowledge
- helps them rethink assumptions and reconsider what’s important
- helps them identify and mitigate problems not previously considered
- provides a better understanding of what’s significant for patients and the public
