Unlocking the potential of cancer data: Announcing the Oncology Data Summit

Patients, health professionals, payers, policymakers, industry – all healthcare stakeholders want to get more from cancer data. We know this because we have been talking to them: the Taking Action on Cancer Together paper, launched at the European Health Forum Gastein in October 2018, 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.

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 amongst 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 18 June.

From understanding to action

Cancer data are 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 paints a picture of 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 behavioural insight.

Using this data well is a key challenge. 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.

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. We have identified a range of initiatives designed to improve access to existing datasets, improve collection, standardise data, and collect new data.

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

If this is to improve 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 an important part of the conversation on data.

Join the conversation

The Oncology Data Summit will be a catalyst for this process. By bringing together data thought leaders on data, oncology stakeholders, and decision-makers, we can accelerate the more effective collection and use of cancer data across Europe.

The Summit will build on the Oncology Data Landscape work, helping to build a common understanding of the challenges and opportunities we collectively face.

Alongside the main programme, a poster exhibition – which is open for submissions* – will help facilitate networking and bringing together the players willing to act on specific issues. And because benefits for cancer patients must always be the goal of this work, we are offering travel and accommodation reimbursement to patient representatives* to ensure they are at the centre of the debate.

We all stand to benefit from better use of data in oncology. Join us at the European Oncology Data Summit and play your part in delivering better cancer care.

Further reading
* For information on submissions to the poster exhibition, and reimbursement for patient representatives, please contact Mihai Rotaru at

Vincent Clay

Vincent Clay is vice-chair of the EFPIA Oncology Platform and Senior Manager, International Policy at Pfizer. Vincent...
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