Research

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 Involve 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 joann.leeding@addenbrookes.nhs.uk

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 ppi@addenbrookes.nhs.uk
  • BioResource are looking for volunteers to join the 15,000 people who have already signed up to take part, for more details visit www.cambridgebioresource.org.uk
  • 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&D@cpft.nhs.uk for more information.

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

Our aim is to provide the resources, expertise and infrastructure to turn patients' own research ideas into high-quality clinical projects.

The team are currently working with the Polycystic Kidney Disease (PKD) charity to develop a trial that will assess whether high levels of water intake vs. normal water intake affect the growth of cysts in a condition known as Autosomal Dominant Polycystic Kidney Disease (ADPKD).

The research question was suggested by patients and the trial design is in partnership with them. Directed by lived experience within the PKD Charity, several features have been included to ensure trial participation is easy for patients. Home urine tests and smartphone applications allowing patients to enter information and complete questionnaires means that frequent clinic visits and cumbersome fluid diaries are not required. Ideally PKD Charity will be able to repurpose this smartphone technology for all patients to easily monitor their health status and fluid intake.

We welcome more ideas like this from all patient organisations and charities. Contact plrh@hermes.cam.ac.uk

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