What is Patient and Public Involvement (PPI) in Research?

Each year thousands of patients and volunteers take part in clinical trials and research studies. They volunteer their time, donate samples of blood/tissue or complete questionnaires about their lifestyle with the aim to better understand about how our bodies work or which treatments work best.

Increasingly patients and the public are becoming more involved in our research in a variety of ways:

  • By acting as expert consultants, for example, advising on patient information sheets and research protocols
  • Carrying out research work alongside research teams, collecting and analysing data
  • Providing advice and sharing their patient experience
  • Helping researchers with communicating to the public

All of these activities are described as ‘involvement’ in research by the NIHR, you can read more

on the NIHR website.

‘Involvement’ is important because it helps to improve our research. By working in partnership, blending a patients’ experience of their condition with the researchers’ knowledge and skills can deliver beneficial scientific research.

If you want to find out about how your research can benefit from PPI please contact Amanda Stranks

So what does involvement look like?

It can be a number of activities. Some can be completed at home, reviewing documents or taking part in telephone conferences, for others we will invite you to meetings to share your views with research teams. PPI representatives who are part of research study teams will meet regularly with researchers and often have the opportunity to speak at conferences and events.

We might want you to advise us on how to design a research study. Our PPI panel recently helped a team with a project to collect information about cancer diagnosis. The panel reviewed the questions and what the research team were going to measure. This provides helpful insight into what cancer patients might like to know before taking part in the project.

Who can be involved?

There are lots of opportunities to get involved with PPI:

  • Join the CUH PPI panel which already has over 70 people, aged over 18 from across the East of England. You don’t need to a patient at the moment, or in fact have ever been one. Your interest in helping us to shape our research agenda is what matters. We will provide support and informal training to help you participate fully just contact
  • The easiest way to get involved in health research in Cambridge is to join the Cambridge University Hospitals (CUH) Patient & Public Involvement (PPI) panel. For more information - visit the National Institute of Health Research (NIHR) Cambridge Biomedical Research Centre (BRC) pages.
  • CPFT have a very active Service Users & Carers Research Group, they get involved in focus groups, provide training to researchers to help them understand mental health issues from a patients point of view and organise networking events. If you have previously had or experienced mental health issues and are interested in research then you are welcome to join the group. Contact R& for more information.

You may have your own research question. We have recently set up a Patient Led Research Hub

Co-produce your own research

Do you live with a health condition and have a research idea that could help you or your healthcare providers? The Cambridge Patient Led Research Hub (PLRH) works in partnership with charities and patient groups to deliver clinical studies based on patients’ own questions. We accept research ideas on any healthcare topic, and if the idea is feasible, we’ll help you co-produce your research with the Cambridge Clinical Trials Unit and clinical experts. Find out more and submit your research idea on our website.

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