Involving patients in our research ensures it is relevant to them.
Public and Patient Involvement (PPI) is about researchers working as partners with the people their research will affect.
When planning a study, researchers often have questions for patients, potential patients or members of the public.
For example, they might want to understand what’s important to patients, so they know what successful treatment looks like. Or they might ask people who have had treatment what could have been better.
Talking to people in the early stages of designing a clinical trial (study) could help researchers learn how to approach potential participants and what might put them off.
Who can get involved?
INVOLVE is an organisation which supports public involvement in research and is part of the National Institute for Health Research (NIHR). They say the ‘public’ could include ‘patients, potential patients, carers or people who use health and social care services as well as people from organisations that represent people who use services’
Researchers might try to involve people who:
- have an illness or condition
- have had treatment or an operation
- care for people with a condition
- represent anyone who uses or might use a service
See What is public involvement in research? on the INVOLVE website
How has Public and Patient Involvement made a difference at Bristol Trials Centre?
We changed the options we decided to compare
For one study, researchers originally planned to randomise patients to a specific treatment. However, the PPI group didn’t feel patients would be happy with this. Some of the treatments had a big impact on daily life and the size of this impact could vary from person to person.
The study was redesigned so that patients are assigned randomly to one of two groups.
One group is given a specific type of treatment. In the other group, patients can choose their treatment after a detailed discussion with their doctor.
The PPI group also helped make sure documents used in the study are easy to read and understand.
We learnt what was working well and what could be improved
We were surprised by how well people were participating in a study, attending follow-up meetings and taking their medication regularly. We had thought this would be challenging and we wanted to understand why it was so successful.
Unusually, we formed a PPI Group of existing study participants to ask them about their experience of taking part. From this group we learnt why they wanted to take part in the study, what they liked about it and what had been frustrating or not clear.
When we produced a results newsletter for participants, they told us which outcomes were important to them. These were different from the things we assumed they cared out. The feedback we gained will help when we set up future studies.
It helped us improve the information we give participants
On another study, we shared our draft Patient Information Leaflet with the PPI group.
They told us that it was too long and that patients with dyslexia could find the underlined sections hard to read. They also said the paragraphs explaining how long we keep patient identifiable data were confusing. They asked us to add a labelled diagram to explain how a piece of equipment we’re using works.
The PPI group also said our text message reminders should not be sent as often as we had planned.
How do I get involved?
There are several ways to get involved:
A specific study (trial)
Please look through our list of current studies to see if any of these are looking for PPI (Public and Patient Involvement)
Our Public and Patient Advisory Group (PAG)
Made up of members of the public who meet four times a year to discuss the Bristol Trial Centre’s research
- helps us make sure what we look at is important
- helps us decide what research to look at next
- contributed to the design of our PPI website and information leaflet
- tried out a survey for researchers
- advises on study design
Meetings take place in an informal, relaxed environment and are organised to fit around members’ other commitments.
To learn more about Public Patient Involvement or to meet the Patient Advisory Group, please email us at firstname.lastname@example.org
Take a look at opportunities to get involved