Involving patients and the public in our research ensures it is relevant to them.
When planning a study, researchers often have questions for patients, potential patients or members of the public. These can include:
- Wanting to understand what is important to patients, so they know what successful treatment looks like.
- Asking people who have had treatment what could have been better.
- Finding the best ways to approach potential participants and what might put them off participating in a study.
Who can get involved?
At times researchers might want to involve particular 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 an NHS service
They may also want to involve:
- Potential patients
- Previous patients
- People who use health and social care services
- People from organisations that represent people who use services
You can find more information on What is public involvement in research? on the NIHR INVOLVE website.
How has Public and Patient Involvement (PPI) made a difference at Bristol Trials Centre?
You can make a direct difference to research by getting involved.
In the PURSUIT Study, during the application stage, the study team engaged with the PPI group and directly with patients who have recurrent stress urinary incontinence, the condition being studied.
Key messages from these discussions were fundamental in designing a study which is acceptable to patients, namely randomisation between endoscopic bulking injections and a surgical treatment. This design strongly contrasted with the original intention, which was to randomise between surgical procedures. The PPI advice was unanimous and unequivocal; such an approach would not be acceptable.
You can also make a difference by reviewing documents, such as patient information leaflets and study results documents. Through discussion with members of the public, changes have been made to the focus of the documents, as well as the length and layout.
You can also find out more about the impact of PPI work by viewing this presentation.
How do I get involved?
A specific study/trial
Please look through our list of current studies to find any PPI opportunities.
Our Public and Patient Advisory Group (PAG)
Our Patient Advisory Group (PAG) aims to increase the public and patient involvement in our research studies. PAG members include those who have experienced NHS treatment and wish to use their experience to improve research. It also includes members of the public who have an interest in research.
Members of the PAG:
- help us make sure what we look at is important
- help us decide what research to look at next
- contribute to the design of our PPI website and information leaflets
- try out surveys for researchers
- advise on study design
Meetings take place in an informal environment and timings are flexible to fit around members’ other commitments.
We are always looking for patients and carers from all backgrounds to get involved. Please email firstname.lastname@example.org to find out more.
Bristol Biomedical Research Centre
Take a look at opportunities to get involved