Many of our clinical trials actively involve patients and members of the public, whose input is vital in helping us successfully design and deliver our research.
We are able to draw on the expertise of five patient and public involvement (PPI) groups who help us shape our clinical trials. These groups are specific to certain disease areas, as some people like to get involved with research within an area to which they have a connection; however they are increasingly contributing to a broad portfolio of research.
- Musculoskeletal
- Cancer, covering both solid tumours (oncology) and cancers of the blood (haematology)
- Cardiology
- Oral and dental health ; Smile Aiders
- Paediatrics: Leeds Young Research Owls
Involving non-medical people in our research is very important and we’re always looking for new members to join our PPI groups.
Many members are people who have personal experience of these diseases, either as patients or carers, and this enables them to provide very relevant input to our research. But other members are simply people with a range of different life experiences, who understand how important clinical research is to improving healthcare, and want to help where they can. Whatever people’s background or motivation, their support and input directly and positively benefits our trials.
Our PPI groups work with us in lots of different ways:
- Taking part in focus groups, to discuss research questions and help us decide our research priorities
- Joining research steering groups, to help us develop a specific trial or series of trials
- Taking part in writing trial protocols – which set the parameters for a trial
- Working with us on grant applications to support new trials
- Providing advice on trials that are underway, for example, identifying elements of a trial that patients might find off-putting and which might be affecting recruitment
- Supporting our outreach work to raise awareness of research amongst patients, including the NIHR’s ‘be part of research’ campaign
The PPI groups meet either quarterly or every six weeks, though we are sometimes in touch with members at other times to ask for their help on a specific question. We also sometimes have meetings that bring members from the different disease area groups together.
Involvement in a PPI group is voluntary and people give as much or as little time as they are able. No medical expertise is needed to join a PPI group – the value of the support they provide is that it brings a different perspective to our own.
If you’d like to join one of our groups, or simply find out a bit more about what might be involved,
please contact:
Dr Hanif Ismail, Research & Innovation PPI Manager
Email: hanif.ismail@nhs.net
For more information about our PPI strategy, please see our strategy document here or download our PPI booklet here.