Cancer patients have joined NIHR Leicester BRC researchers to share their experiences, and talk about shaping the future of cancer research in Leicester.
Leah, who was diagnosed with Hodgkins Lymphoma at the age of 28 and is currently in remission, was one of around 30 people who came along to the first Leicester and Leicestershire Cancer Patient and Public Involvement and Engagement (PPIE) Group.
Leah came along to share her experiences of the difficulties younger people living with cancer experience. She said: “I was curious to see if I could get any information or input my experiences and help anybody. Speaking to the researchers I hope they can use this group to make sure everyone’s voices are heard, and the needs of all cancer sufferers in the community are met.”
The event took place on 26 October at the University of Leicester’s George Davies building. It was a chance for members of public with experiences of the condition to meet with leading cancer researchers and clinicians from the NIHR Leicester BRC, the University of Leicester and University Hospitals of Leicester NHS Trust.
The event featured an opening address from Dr Harriet Walter, an Associate Professor of Oncology at the University of Leicester and a phase one oncology lead for Leicester Hospitals. Dr Walter stressed the importance of patient involvement in developing effective research and treatments for cancer.
There were also presentations by two of Leicester’s leading cancer researchers. Professor Karen Brown gave a presentation about patient involvement in shaping research into cancer prevention trails such as Colo-Prevent, which focuses on detecting and preventing bowel cancers. She was followed by Dr Esther Moss, a consultant gynaecological oncologist who spoke about the role of patient participation in her research on womb cancer.
In her address Dr Moss stressed how important public involvement is to cancer research: “Patient and Public involvement reminds researchers what they are doing is not just an academic exercise, it needs to make a real-world difference and be relevant to the communities we work with.”
Dr Walters added: “We all bring different experiences and perspectives to research; we can’t do the work without a team of people with different expertise. This helps us ensure we are meeting patient needs with our work and that it is relevant. To do that effectively groups like this are essential.”
All the speakers emphasised the number of ways members of the public could get involved in research beyond simply taking part in trials. This included attending focus groups, volunteering at public events and helping to produce printed material and videos about cancer research in Leicester for the wider non-scientific audiences.
Anne Shickluna a former eosophageal cancer patient and a volunteer at the Hope Cancer Trials Centre for past nine years explained why she was attending and why events like this are important to patients and researchers a like: She saidL; “I’m always keen to support in any way I can. Evenings like this bring together people with different ideas and opinions and it’s also interesting for members of the public to listen to the professionals. There is a lot to be done.”