The first Sunday of June each year marks Cancer Survivor’s Day, a celebration of life held in countries across the world, where people come together to celebrate those that have survived, inspire those recently diagnosed and support families and communities affected by cancer.
Patients and their families are central to the research agenda. We spoke to two of our patient advocates – themselves cancer survivors – to find out what it means to them to be part of research taking place across Guy’s and St Thomas’ that is helping improve the future diagnosis and treatment of cancer.
Clive Moore is a member and Lay Chair of our National Institute for Health and Care Research (NIHR) Biomedical Research Centre’s (BRC) Research Advisory Group (RAG). Clive was diagnosed with prostate cancer in 2016, and decided to volunteer as a patient expert for Macmillan Cancer Support as a way to payback the care and support he had received. His involvement inspired him to take part in a clinical trial for high blood pressure at St Thomas’ Hospital. Whilst there he came across a leaflet for our NIHR BRCs RAG and became a member.
Clive said: “I now serve on many different panels and have become a co-applicant on a couple of research projects as well as doing other charity work and plain English reading. Some of the panels at Guy’s and St Thomas’ include the palliative care steering committee, the Electronic Records Research Interface data access committee and the appointments and co-production committees. I also contribute to committees at Cancer Research UK and Prostate Cancer UK. So you can see there are many opportunities to express your views.”
He added: “When you sit there amongst surgeons, anaesthetists, dieticians, researchers and academics you feel a very small fish in a very big pond. When someone comes over to you after a meeting and says you opened another perspective to them, then you know you are doing something right. We all have an opinion and a voice but it can only be heard if you are willing to stand up and speak.”
Alan Quarterman has been a patient advocate for 15 years. He is currently a member of the Guy’s and St Thomas’ NHS Foundation Trust Patient and Public Involvement (PPI) group helping deliver our NIHR BRC’s training to research staff on how to involve patients in research design and participation He is also part of the King’s Health Partners and Inspirata’s steering committee and project team, evaluating how oncology Artificial Intelligence (AI) can improve matching patients to clinical trials.. Reflecting on his time volunteering as part of various research initiatives he said:
“In practical terms, this sees me serve as a patient sounding board by evaluating new reforms, innovations, research programs or cancer services being considered as part of care delivery, and then speaking out and sometimes posing puzzling questions whenever I feel that the patients’ voice is at risk of going unheard or being marginalised.”
“It is imperative that patient buy-in becomes a key tenet in how all patient experiences are designed. Moreover, as we look ahead and start to entertain the benefits exciting new AI technologies might introduce to cancer research and patient care, that we also do so with our eyes fully open as to both the need, and indeed the opportunity, to bring the patient with us.”
You can read more about our recent research looking at how exercise could improve cancer treatment outcomes at https://www.guysandstthomasbrc.nihr.ac.uk/2022/02/02/exercise-programme-could-improve-cancer-treatment-outcomes/, our work on investigating AI for breast cancer diagnosis at https://www.guysandstthomasbrc.nihr.ac.uk/2022/02/01/ai-technology-investigated-for-breast-cancer-diagnosis/ and about our cancer data team being