Our Research Involvement Network (RIN) is a group of people who each have a personal connection to pancreatic cancer, through being patients, carers, loved ones or survivors.
Being a part of our RIN gives you the opportunity to help shape pancreatic cancer research. It connects you to the exciting and important changes happening in pancreatic cancer research, gives you the opportunity to meet researchers and help us determine which research we should support with the funds raised by our supporters.
Within our RIN, each member has unique experiences of pancreatic cancer diagnosis, treatment and care and this is your lived experience. These diverse insights can help pancreatic cancer researchers shape their work to ensure it is relevant to people affected by pancreatic cancer.
I became involved with the Research Involvement Network to help Pancreatic Cancer UK to both find a way to detect this insidious disease early and to also find a way to cure it. If I can help in this small way, I will do it in memory of the man I loved and lost to pancreatic cancer, in the hope that others don’t suffer in the same way.
Involving people with lived experience at all stages of the research process ensures that the research being conducted is relevant to the needs of people affected by pancreatic cancer.
This means moving beyond thinking of people with lived experience as participants in a study, but as partners in setting research priorities, recommending the research that should be funded and guiding researchers with their work.
As a member of our RIN, you can share your experiences to inform and influence research projects. Research ideas which have been informed by lived experience are not only more likely to be more relevant to clinical practice; they are also more likely to be awarded funding.
To join our RIN, you will need to complete a short application form which will ensure you receive our monthly RIN email bulletin.
At the beginning of each month the Research Team will send the bulletin to RIN members which includes the latest opportunities to get involved in pancreatic cancer research. This can include any researcher who is undertaking a project in pancreatic cancer research, not just our current grant holders or researchers applying to our funding schemes.
The bulletin may also contain news and research updates as well as examples of ways our RIN are shaping pancreatic cancer research.
You are welcome to sign-up to any opportunities which you are interested in, and you can choose the time and opportunity which works best for you.
All these opportunities draw upon your unique experiences as someone affected by pancreatic cancer.
You can share as much or as little of your personal experience as you feel comfortable doing. You do not need to have a research or scientific background to be a member of RIN.
Researchers may ask you to comment on documents to ensure that they can be understood by their intended audience. These documents can range from project summaries in a grant application to information leaflets for a clinical trial.
Pancreatic Cancer UK run various grant funding rounds and we ask our Research Involvement Network to review the applications received from researchers to ensure they are relevant to people affected by pancreatic cancer.
Focus groups consist of a small group of individuals with lived experience along with a researcher. They are opportunities to find out more about a project, ask questions of the researcher and for the researcher to hear what you think about their project based on your personal experiences. They are a great way to stimulate discussion on a research project and can be virtual or in person.
Researchers may want the voice of lived experience to be involved for the duration of their project. This would involve attending meetings to discuss the progress of the project and commenting on the next steps.
Researchers may want opinions or answers to specific questions to help shape their research.
Researchers may want to share their research results with people affected by pancreatic cancer and invite individuals to their research facilities.
Dr Leonid Nikitenko, Professor Anthony Maraveyas and Dr Darragh O’Brien plan to test pancreas cyst fluid and blood to find a protein ‘signature’ which can help to assess the risk of a cyst becoming cancerous and develop a less invasive test for early diagnosis of pancreatic cancer.
Professor Sheraz Markar is a surgeon aiming to investigate whether GLP-1 given before surgery can reduce complications after surgery. GLP-1 is a natural hormone released in the intestine in response to eating.
Our policy team seeks volunteers affected by pancreatic cancer to share what matters most about research and clinical trials.
Pancreatic tumours are very acidic, which blocks treatment from working. Professor Pawel Swietach from the University of Oxford is looking to develop targeted drug particles to kill the cells that cause this resistance to chemo-, immuno- and radiotherapies.
Dr Christiana Kartsonaki at the University of Oxford is aiming to investigate the best way to identify individuals at a higher risk of developing pancreatic cancer, over the next year, and over a longer time period, across populations.
A virtual Interview project where patients who have had pancreatic cancer and unintentional weight loss called cachexia (or their carers) can share their experience and provide feedback on a proposed clinical study.
If you have any questions about our Research Involvement Network, please get in touch.
The Research Team
