COVID, cancer and other chronic diseases: urgency is needed for the European Health Data Space to boost research and care

Trustworthy e-health systems will mean improved early prevention, enhanced quality of life for all, and an unprecedented level of collaboration that can yield ground-breaking research and outstanding health products. However, innovation is only as impactful as the number of people using it; no dataspace can truly make a difference without earning European citizens’ trust.

DIGITALEUROPE’s new report A digital health decade: from ambition to action. 4 pillars for a trusted and collaborative health data space shows that trustworthiness is not likely to be achieved, unless several steps are taken:

1. Clearly demonstrating how all everyone involved in healthcare – patients, healthcare professionals and providers, innovators – will benefit from using health data.
2. Ensuring secure privacy-protecting digital health technologies and infrastructure.
3. Strengthening and scaling up existing health data sharing successes.
4. Collaborating with and among national and European policymakers to ensure the roll-out of patient-centric services in each Member State and across borders.

 Cecilia Bonefeld-Dahl, Director-General of DIGITALEUROPE, said:

”Everyone should have access to the health services they need, and as COVID sadly proved, we are nowhere near guaranteeing digital and remote health for all. The European Health Data Space can be the key tool to unlock this data – vital for research, new treatment and vaccines – both in Member States and across borders.” 

“We must prepare ourselves now, as 4 million Europeans are diagnosed with cancer every year. We hope that our recommendations on easy-to-use e-ID services; simple common consent forms; and on single access point for the secondary use of data; as well as our concrete case studies can help policymakers get the framework right from the start.” 

Francesco Buonarroti, Chair of DIGITALEUROPE’s Executive Council for Health and VP & CIO Business Technology Pharm Commercial EMEA, Johnson & Johnson, said:

“Data helps the global healthcare community to unlock insights that ultimately save lives. For instance, international collaboration and data sharing made it possible to understand the COVID-19 pandemic and develop vaccines and treatments in record time.”

30% of the world’s stored data is generated by the health sector. Now, such data – highly valuable prevention, treatments and vaccines development – is often inaccessible, even to the patient, and nationally siloed and shielded. The European Health Data Space (EHDS) proposal has the potential to facilitate access to and use of multiple types of health data, not only to support healthcare delivery (known as primary use of data) but also for health research, innovation, and health policy making purposes (known as secondary use of data).

In a world of data abundance, public concern over privacy violations, cyberattack threats and misuse of private data, has been understandably heightened. For instance, throughout the pandemic, we witnessed an all-time high of cyberattacks disrupting care in hospitals and healthcare facilities. Although many surveys point out that citizens are willing to share their data, it remains an open question in which way and to what terms.

Beyond mere words of reassurance, European citizens need to see robust standards and protocols ensuring that any access to their private health data is carried out in the most secure and privacy-proof manner.

If we want to turn the tide, we should collaborate and leverage the existing successes of the General Data Protection Regulation (GDPR) and initiatives in some Member States such as Finland and France.