Patient and Public Involvement
Here you can find out more about how the public get involved in research. Health research needs participants for trials, healthy volunteers for a range of studies, and individuals willing to share their views and life experiences to help shape our research agenda. We hope to inspire you to get involved too.
Your opinion matters
Members of the public and patients offer our researchers valuable new perspectives. When health researchers and people who aren’t scientists talk together, the design and course of a research study can be improved. This has many potential benefits for research participants and patients.
- We bring people together with researchers to develop health research
- We do this by organising meetings, discussions and online document reviews so that people can ask questions and provide input
- We do this to improve research and make sure it is relevant to participants and benefits patients now and in the future.
If you are interested in finding out more about the amazing research taking place on the Cambridge Biomedical Campus, and can give a little of your time, please consider volunteering with us and joining the CUH Patient and Public Involvement Panel.
- Give a little of your time to make a worthwhile contribution to health research
- Gain new skills and take part in (optional) training
- Meet new people
- Be part of the world-renowned research happening on the Cambridge Biomedical campus
- Receive information about talks and other local events.
We have three roles currently available:
Research Reader If you are interested in research and enjoy reading, this flexible role (with no travel required) could be for you. Please see our guide for more information.
Focus group, Steering group or Advisory Panel member If you enjoy meeting people and discussing a wide variety of research work, you may enjoy this role. See our guide for more information.
Panel Representative Our Panel Representatives join staff to support patient and public involvement at public events, as well as help shape the agenda for engagement. See our Role Description for details.
Professor Rebecca Fitzgerald and team have developed a new diagnostic tool for Barrett’s Oesophagus called the cytosponge. (add link) Barrett’s oesophagus is linked with the occurrence of oesophageal cancer. The cytosponge has been extensively tested in studies with patients and healthy volunteers at the Cambridge Clinical Research Facility. The team now want to find out if the tool can be used effectively in GPs surgeries, and prove if it can be used to diagnose Barrett’s oesophagus early and therefore detect patients who might be at risk of developing this cancer.
The CUH PPI Panel volunteers were involved in reviewing the study design and protocol, patient information sheets and summaries, and have received feedback and updates on trial progress.
They met as a focus group to hear a presentation from the study data coordinator and research nurse and to provide feedback on study documents. There have been subsequent meetings to update the group on progress. The panel asked many questions including how GP surgeries were chosen and why not all GP surgeries. The team explained that GP surgeries close to endoscopy units were chosen in case of any emergencies, for example, swallowing of the capsule and string. They also need to have some GP surgeries as control groups to assess the normal level of diagnosis in the community.
As a result of the focus group, patient information sheets were simplified and the ethical considerations and selection choices explained. The public group are now informed of progress and hope to retain a role in oversight for further research. The research team were hugely appreciative of the support they have received and are now advocates for the early involvement of patients and the public in the research process.
The CUH Patient and Public Involvement (PPI) Panel Coordinators are available to give advice and support for researchers engaging with PPI. We can also assist you with access to the Panel who will review documents, attend focus groups and help you to incorporate the views of the public into your proposals and on-going research. Here’s what colleagues have said:
‘I went through all the suggestions one by one and systematically applied changes to the documents. The documents read a lot better after the edits.’
Dr Gaby Captur Clinical Lecturer and NIHR Rare Diseases Transitional Research Fellow
‘Your comments have been incredibly useful – in particular pointing out parts of the summary that are confusing. I have now extensively revised this based on your advice, and the advice of other groups. Many thanks to all of you.’
Mr Stephen Price Consultant Neurosurgeon NIHR CLAHRC Fellow
‘All the feedback was very helpful and I expect it to impact positively on the study.’
Dr Audrey Melvin Clinical Research Fellow University of Cambridge