Data: our secret weapon in the war on cancer (Guest blog)
05.12.18
Those of us in the oncology world have been hearing words of optimism for a while now: patient data will transform how we diagnose and treat cancer. It will make cancer care more personalised, more outcomes-focused, and dramatically improve survival rates and quality of life. It may even remove the fear factor that accompanies the Big C.
For the public, talk of cancer breakthroughs and big data have been slow to translate into the new era promised by the headlines. However, as I listened to leading experts – in cancer, data and health policy – address The Economist’s War on Cancer conference in London, I had the sense that we are now truly on the cusp of a radical shift.
But there is a caveat. We have the tools needed to collect, analyse and apply the power of big data to oncology but there are still barriers to unleashing a data revolution. Our task is to systematically identify and dismantle these barriers – just as scientists have unpicked the mechanisms underlying cancers to deliver game-changing therapies such as PD-1 inhibitors and CAR-T therapies.
Science vs Cancer
Listening to industry speakers at the War on Cancer, I was struck not only by the central role that data will play in future – as articulated by Liz Barrett, CEO of Novartis Oncology – but also by Markus Kosch of Pfizer Oncology who spoke of companies’ willingness to play an active part in ensuring greater digitization around the world.
Mark Lee, Head of Personalised Healthcare at Roche put patient outcomes in the spotlight, highlighting the need to define, measure and collect standard datasets. This chimed with a fascinating address by Neil Bacon, the new CEO of the International Consortium on Healthcare Outcome Measurement (ICHOM). He spelled out how wasteful it is to collect different data or to store it in ways that make it difficult to compare datasets. Interoperability is not a new problem, but it is a persistent one.
These sentiments were echoed in the words of Giske Ursin, Director of the Norwegian Cancer Registry, and Sam Simpson, Co-founder of the CODE Initiative. They cited political will and investment in data infrastructure as major hurdles to be cleared on the road to beating cancer.
Our pledge
Still, the prize for getting this right is immense. That is why the EFPIA Oncology Platform has invested in an initiative designed to map oncology health data in Europe. Our goal is to identify initiatives across Europe that are collecting and using oncology data. This is helping us to spot trends, challenges and opportunities that will unlock the potential of this field.
Working with independent researchers, we have published an overview of the oncology data landscape, along with 10 countries profiles and summaries of data sources and initiatives.
Detailed reports are freely available through the links above but let me leave you with highlights of the solutions identified through this initiative. To make data-driven oncology care a reality, public awareness and acceptance is vital. That is why we need an oncology summit to increase public engagement on the hot topic of real-world data.
This could be supported by the creation of an open real-world data catalogue and the development of a quality framework and accreditation system for data collection. In addition, a best practice playbook for data handling could help clinicians and researchers to collect and use data in the years to come.
We won’t rest until the War on Cancer is won. Data is our deadliest weapon. Let’s use it.
