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:
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
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
- what information they would want before agreeing to take
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
For examples of patients and the public who have got involved
with research at UH Bristol visit our case studies page.
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
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
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
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