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.
Statistical models can be used to predict how long patients can be expected to survive following a diagnosis for pancreatic cancer. Dr Richard Jackson, a biostatistician, at the University of Liverpool would like you to join a focus group to understand if or how these models should be communicated to patients.
Dr Grigorios Kotronoulas and a team of researchers from the University of Glasgow and the European Oncology Nursing Society want to understand what a good day is for someone living with pancreatic cancer. They would like to interview individuals living with pancreatic cancer to understand what activities or actions make “ a good day” and what might change it into a bad day.
Mr Andrew Smith from Leeds Teaching Hospital NHS Trust would like your input to advise and shape the design of his study. The study aims to find out whether a novel method of treating jaundice by using endoscopic ultrasound is better than current methods and as a result shorten the time to active treatment.
Siti Aisyah Suhadi & Tharny Ramesh are postgraduate students from the University of Surrey are conducting an interview study to explore the views among individuals living with or beyond cancer and with obesity on the use of weight-loss injectables plus the perceived support available to manage weight.
Dr Patrick Kierkegaard, Dr Shayan Bahadori and Dr Bowen Su from Imperial College London and the Institute of Cancer Research would like your input on a toolkit they are developing to help GP surgeries get ready to use new pancreatic cancer tests.
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
