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Patient and public involvement in research

What is it?

UH Bristol is a research active Trust, investigating underlying causes and new treatments for many acute and chronic conditions, and taking part in clinical trials. Our research strengths include: cardiovascular disease, cancer, rheumatoid arthritis, diabetes, surgery, emergency medicine, childhood illnesses and nutrition.

Most of our research is funded by the National Institute of Health Research (NIHR). We offer many people the opportunity to take part in research studies and clinical trials, and research could not take place without the participation and consent of our patients. But we, the NIHR, and charities who fund research recognise that there is another important role for our patients and the public to become involved at all stages of research from designing the study right through to implementation into clinical practice. For example, activities include identifying new areas for research, commenting on patient information leaflets, sitting on the management groups of clinical trials, and helping with dissemination of research findings. This type of activity is known as "patient and public involvement in research", or PPI.

Patient and Public Involvement (PPI) is "...research being carried out 'with' or 'by' members of the public rather than 'to', 'about' or 'for' them" - as defined by INVOLVE, a national advisory group to support greater public involvement in healthcare research: http://www.invo.org.uk/

Why do it?

Involving patients and the public ensures that the research is kept relevant and meaningful to patients; how a medical professional perceives a disease may be very different to the experience of someone living with it. So not only is the quality of the research improved, but also the likelihood of the study succeeding in terms of recruiting patient participants into the study.

All applications for research funding to the NIHR and most charities now require demonstration of PPI at the development stage. There are different levels of involvement, but at a minimum PPI representatives are:

  • asked to comment on the study
  • say whether it is relevant
  • suggest other areas that are important
  • comment on whether or not they would take part in the study if funded, and
  • what information they would want before agreeing to take part

Who can get involved?

People who take part in PPI activities, either by volunteering or by being asked to by a clinical research team, are usually those who have had experience of the disease or condition being investigated, or are parents or carers of someone who does. Some research groups at UH Bristol, especially those investigating illnesses that people live with for a long time, have patient reference groups or advisory panels. For example, the Academic Rheumatology Research Group (a collaboration between researchers at UH Bristol, University of the West of England and University of Bristol) has a very active PPI group, including patient research partners. The latter are people with experience of the disease, who actively contribute to the study at all levels, including being co-applicants on grant applications. Charities also have patient advisory groups that are often willing to comment on research proposals.

For examples of patients and the public who have got involved with research at UH Bristol visit our case studies page.

Local Initiatives

UH Bristol is one of the local organisations contributing to "People and Research West of England", a collaborative initiative between local NHS organisations and universities to support researchers to involve the public in health and social care research, and to support the public in getting involved. This includes training events for both researchers and members of the public. Visit the People and Research West of England website.

All of the NIHR research grants held at UH Bristol have some level of public involvement. The NIHR South West Medicines for Children Research Network (MCRN) Young Person's Advisory Group meets once a month (based in Bristol), and are also looking for parents/carers to inform future research studies. Visit the MCRN website.

PPI contacts for other local research networks and organisations can be found on the NIHR website

Where to go for further information

Resources and guidance for patients and the public:

People and Research West of England can advise members of the public wishing to become involved in research, and organise training events. Visit their website.

'Going the Extra Mile'  The final report and recommendations to the Director General Research and Development/Chief Medical Officer (CMO) Department of Health of the 'Breaking Boundaries' strategic review of public involvement in the NIHR.  Available to download at  http://www.nihr.ac.uk/get-involved/Extra%20Mile2.pdf  (March 2015)

INVOLVE also have guidance available to download, including case studies from patients who have been involved, and more information about what you might be expected to do. Visit the INVOLVE website.

MacMillan Cancer Support invites patients to "...use your cancer experience to help change the future of cancer care. Becoming a Cancer Voice is a unique and powerful way to make life better for everyone affected by cancer". Visit their website for more information.

And also, ask your clinician directly next time you see them.