Transforming oncology with a pan-European approach to data sharing
Between genomic data, electronic health records and digital health tools, we have all the information we need to transform the fortunes of people living with cancer – but how do we ensure improved outcomes don’t fall through the cracks of siloed working?
With masses of data at our fingertips, we have never been in a better position to move the dial on cancer care and treatment. From state-of-the-art genomic screening that categorises malignancies by phenotype to patient-reported outcomes collected via wearables and apps, we’ve never had more to work with.
But just having the information isn’t enough to seize the opportunity it presents. Because despite huge leaps forward in the collection of relevant and useful cancer health data, the research community faces major challenges.
Data sources are disparate and complex, creating a general fragmentation in terms of access and quality. Siloed working, inconsistent collection methods and a lack of patient trust all inhibit researchers and healthcare professionals as they seek to ring every drop of landscape-changing insight from datasets.
Overcoming these challenges is ‘mission critical’ in the fight against cancer, according to the European Federation of Pharmaceutical Industries and Associations (EFPIA), which held an Oncology Data Summit over the summer.
It was the latest in a long line of events and projects aimed at building a pan-European approach to oncology data sharing, and it placed a heavy emphasis on providing practical solutions.
“In 2017, EFPIA initiated the Oncology Data Landscape in Europe project, which identified the need for a clearer shared understanding of the fragmented, rapidly evolving landscape of oncology data,” said a report on the day.
“Using the information coming from new sources is a key challenge as the potential of data remains, to a large degree, untapped in a broad societal sense.”
The event built upon the work of the EFPIA Oncology Platform which has, in recent years, joined forces with a variety of stakeholders to understand how to improve cancer care in Europe.
“From these exchanges, the more effective use of oncology data emerged as a key horizontal enabler for many different aspects of prevention and treatment,” said the report.
Europe versus cancer
The summit, which included stage presentations as well as round table discussions, continued this collaborative approach.
Delegates included leading data experts, oncology stakeholders and patient representatives. They were joined by policymakers including Roberto Viola, the director general of European Commission’s Directorate-General for Communications Networks, Content and Technology, and Dr Vera Katalinić-Janković, Croatia’s assistant minister of health.
“Presenters noted the need for policy action to deliver on the potential of health data – and a European Cancer Plan could help provide this,” said the report, adding that the idea of bringing all European Union member states together under a common cancer eradication goal had garnered much attention during the European elections.
Among the recommendations is the creation of a Pan-European Data Commons, or Cancer Knowledge Network. This, it is hoped, would help tackle siloes and overcome restrictions on access to certain datasets, such as those that are publicly funded.
GDPR requirements around health research should be harmonised across the continent and European projects aimed at “ensuring consistency and uniformity in data conventions including dataset structures, standards, definitions and terminology” encouraged.
Delegates also agreed there was a need to link all health system data sources, such as electronic health records, across Europe.
“The current situation is fragmented. Standardising and harmonising cancer data types is important for providing timely, comparable data on cancer epidemiology and care,” said the report.
“In turn, establishing database partnerships or federated networks can ensure we have the necessary infrastructure to access necessary health data.”
Keeping it private
Linking data sources and enabling the seamless sharing of information across institutions, healthcare systems and even borders is problematic, however, when patients do not understand the risks, benefits and processes involved.
“Enhanced access to data depends on the confidence of patients to securely share their sensitive data, but also on increased interoperability, which needs appropriate infrastructure and data standardisation,” said the report.
The summit delegates saw patient empowerment, improving health literacy and transparency as “essential” to increasing people’s trust in any new system.