From Science to Real-Life Oncology
PPG Members Barbara Hibbert and Alan Clarke at the ECCO Summit
My name is Barbara Hibbert and I am a member of the Patient-Public Group (PPG) for BCI UK. I am a bowel cancer patient and chose to become involved with the PPG when my recurrence was found to be incurable and inoperable. I am keen to be involved with any initiatives which will improve the diagnosis and treatment of bowel cancer.
As a member of the PPG, I was given the opportunity to attend the ECCO European Cancer Summit in Vienna from 7th-9th September 2018 as a patient advocate. I was joined by fellow BCI UK PPG member Alan Clarke and Programme Manager Paul Affleck, as well as clinicians, researchers, pharma companies, other patient advocates, politicians and stakeholders, to discuss the future for cancer treatment in Europe in the face of the expected rise in incidence of cancer over the coming decades. Using the USA ‘moonshot’ as inspiration, the summit focused on the challenges of improving outcomes and care for cancer patients at a time of constrained public finances.
The summit also highlighted issues around policy and how to ensure continued structured co-operation between European countries. This was especially interesting to us as Brexit negotiations continue.
While cancer outcomes in the UK lag behind some of the other European countries, it was clear that our structures did also have something to teach others. It was interesting to note that not all countries have the tradition of charitable giving and support that exists in the UK. Much also depended on what was being counted and how it was interpreted, showing the need for the availability of accurate and relevant data. It was clear that there is a particular need to focus on Central and Eastern Europe where outcomes are particularly poor and which are also areas with a less-developed civil society.
The University of Leeds was well-represented at the summit with Professor Eva Morris contributing to a session on Big Data, where it was recognised that the full realisation of the benefits of big data needs leadership and strategy to ensure implementation. Should this come from governments? One particularly apposite comment was that silos are for farms not pharma! The silos need to be broken down so that there is rapid sharing, consolidation and learning from data as no single institution can go it alone. The challenge is to reassure the public that their data is safe – and to ensure that this is the case.
The good news came from the scientific advances which are leading to novel treatments such as immunotherapy, targeted therapy and precision medicine, although these bring challenges of how to meet their cost.
The need to put patients at the centre of research was clearly recognised and the final session focused on survivorship and in particular the financial discrimination faced by many cancer survivors.
Throughout the conference resolutions were voted on and future actions were agreed. The next summit will be in Brussels in September 2019.