Looking for a “simple solution” to improve cancer care? Share data. That was one of the five recommendations put forward by POLITICO Europe’s Sarah Wheaton in April, at the close of the six-month long Global Policy Lab on Decoding Cancer.

This is a simple request, but also a big challenge. Patients, health professionals, policymakers, industry — all health care stakeholders want to get more from cancer data. We know this because, as part of the innovative pharmaceutical industry association EFPIA, we have been talking to them. In October 2018, EFPIA launched the Taking Action on Cancer Together paper, which draws on a series of roundtables around Europe involving over 150 cancer experts. The paper sets out a strategic vision for delivering better cancer care in Europe — and one of the critical enabling factors is more effective use of cancer data. It’s no surprise that Sarah reached the same conclusion.

Specifically, the paper identified the need for a clearer shared understanding of the fragmented, rapidly evolving landscape of oncology data in Europe. EFPIA has addressed this through the Oncology Data Landscape in Europe project, a suite of materials developed together with AT Kearney and IQVIA, and available to all.

The Landscape materials offer an unprecedented overview of how cancer data is currently being collected and used across Europe, identify blockages and emerging trends, and recommend solutions. First among these is the need to keep building awareness of the current situation and future potential of oncology data — and this is why EFPIA is hosting the Oncology Data Summit in Brussels on June 18.

From understanding to action

Cancer data can be found in more than 1,100 different sources in Europe. The Landscape report highlights the breadth of oncology data currently collected by various stakeholders. It outlines a fast-changing ecosystem that goes beyond traditional sources of information on medicines: claims data, electronic health records and -omics data offer valuable insights not available from clinical trial or pharmacovigilance data alone. These sources are further enriched by information from mobile apps and sensors, social media and discussion forums, and techniques for social and behavioral insight.

From facilitating smarter R&D to providing information on real-world usage of medicines that can be used by decision makers, the report offers examples of oncology data in action. Of course, data about something as personal as cancer needs to be used sensitively, with full respect for privacy. For example, long-term cancer survivors should not be discriminated against when trying to apply for a loan. Responsible data governance is essential, and will be one focus of the discussions at the Oncology Data Summit.

Variation in how we collect, store and use health data across Europe are a drag on progress. In some countries, electronic health records are in their infancy; in others, data systems are patchy or fragmented. Most European data sources lack the scale and robustness to support decisions. The data is there, but its potential is untapped.

There are, however, reasons for optimism. The Landscape reports has identified a range of initiatives designed to improve access to existing datasets, improve collection, standardize data, and collect new data: some of these will be presented live at the Summit.

If we can crack long-standing issues like interoperability, the need for standardized data coding structures, and improve our health data infrastructure, we could unlock the potential of hundreds of isolated sources across Europe.

And if this is to improve health outcomes that matter to patients, we’ll also need to empower frontline health professionals with the skills and support to convert data into action in the clinical setting. That is why health professionals and patients are also an important part of the conversation on data.

Join the conversation

As part of his campaign to be President of the European Commission, Manfred Weber has also highlighted the need to improve in this area. A “European Digital Cancer Centre to Harness Big Data” is the first item in his proposed European “master plan” on cancer.

With Europe on the verge of a concerted push to improve the way we tackle cancer across the continent, then the Oncology Data Summit on June 18 will be a catalyst for this process. By bringing together data thought leaders, oncology stakeholders and decision-makers, we can accelerate the more effective collection and use of cancer data across Europe. You can make your voice heard by joining us there.

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The Oncology Data Summit will take place from 9.30 a.m. to 5 p.m. on June 18 at the Concert Noble in Brussels. You can find out more information here or register by contacting [email protected].

The Oncology Data Landscape re­port is available here.

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