Patient and Public Involvement and Engagement (PPIE) means involving and engaging people with research. Patients and the public have perspectives based on their experiences, lives, and expertise in their own conditions which may differ from researchers’. PPIE means that people can use their lived experience to influence research, helping to make sure that it’s relevant to people’s lives, health, and wider concerns.
It’s important for people to have a say in publicly funded research and be given the opportunity to make decisions, shape, and learn about research which might affect them; to work with research in a way that is done ‘for’ or ‘with’ them, rather than ‘to’ or ‘about’ them. Public involvement in research can make research stronger and more relevant.
Patient Advisor Andrea ShelleyI feel incredibly proud to have been involved with something I know will help other people starting out on their PPI journey and all I had to do was use my lived experience and put it to good use. Researchers and the public working together to make a difference.
What do we mean when we talk about involvement?
Involvement – The National Institute for Health and Care Research (NIHR) – who are the body that funds the BRC – defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. It is an active partnership between patients, carers and members of the public with researchers that influences and shapes research.
Engagement – Where information and knowledge about research is provided and disseminated.
Participation – Where people take part in a research study.
You can read our PPIE strategy to find out our goals and ambitions for PPIE within the BRC’s work[link].
PPIE representative Rebeka Sultana"I’m passionate about using my experiences to help both researchers and the patients/public and making people aware of research and encouraging them to take part. I want to work with researchers to make their research more inclusive and diverse. Inclusion and diversity in research are crucial to ensuring treatment and care are tailored to everyone’s needs.”
How can I get involved?
To get involved you don’t need any medical experience or specialist knowledge. All you need is an interest in health and care research, some time to spare and a willingness to share your thoughts and experiences with us.
We have different ways for you to get involved with the research of the Exeter BRC, and research across the South West.
Our core BRC PPIE group will meet several times a year, usually remotely via a video platform such as Zoom. This group provides important feedback and perspectives to our researchers and for our internal funding rounds. This group is for people over the age of 60, with any and all experiences of health conditions and experiences with involvement.
If you would like to hear about occasional opportunities across the South West from the BRC and other NIHR and community partners across a range of health and social care, you can sign up to our email database [link to form]. We will keep in regular contact with you, and share opportunities – there’s no commitment to get involved, but you will be offered opportunities and are very welcome to get involved in projects that you find interesting or relevant to your experience.
You can get in touch with our team at any time with questions or to get involved – involvement@exeter.ac.uk.
PPIE Representative Catherine Johns“I’m a passionate supporter of health research, innovation and evidence-based practice. I have a particular interest in biomedical research and experimental medicine – the essential building blocks for harnessing the scientific innovations that will lead to new and exciting treatments for patients – the “bench to bedside” approach that brings scientists and clinicians together to improve health and healthcare and that can bring about life-saving treatments."
In this video, public collaborators share the difference that involvement has meant to them:
Patient Advisor Lynne Wright“Working as a patient advisor kept my brain active – it kept me focused on other things as well as my husband’s condition. It’s helped me, and I hope I’ve helped others by being involved.”