Collaboration equals innovation: how can the EU get the European Health Data Space right?


By Cecilia Bonefeld-Dahl

Cecilia Bonefeld-Dahl is the Director General of DIGITALEUROPE and a member of the European Commission’s Industrial Forum and NATO’s high-level Advisory Group for Emerging and Disruptive Technologies

02 Dec 2021

There cannot be a Digital Decade for Europe without health innovation. A European health data space, where data is securely processed and shared, can only be promising news for healthcare workers and their patients. However, what the EU does now will shape healthcare professionals’ and researchers’ work for decades to come. We have an unmissable chance to get it right from the start.


Why is data sharing beneficial?

By unlocking health data, we can empower citizens to make better decisions about their own health situation. We can support them to break barriers to personalised health services. We can empower researchers to find lifesaving treatments and most importantly we can champion innovation as the cornerstone of human progress.

The EU is producing more and more data. Over 30% of the world’s stored data is generated by the health sector. But more data does not automatically mean better decisions nor ground-breaking inventions. If data remains siloed and shielded in national data banks, we don’t only risk to turn our back on innovation, and potentially life-saving treatments, but we also choose to perpetuate barriers to rewarding collaboration.

COVID-19 has pushed us to become more collaborative and trusting of digital tools. Just look at the success of the COVID ‘green pass’. We must build on this momentum.


The elephant in the room: Trust

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.

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 on building IT security, for instance in hospitals, and harmonise member state implementation of the General Data Protection Regulation (GDPR). 

We don’t have to travel far to find inspiration. In Finland, Findata is an independent central agency that can grant permits to researchers and health innovators to access secondary data. It is supervised by the Data Protection Ombudsman to ensure compliance with data protection legislations. In France, The Health Data Hub is set up as the single-entry point for health data providing access for all researchers to collaborate. A similar set-up on an EU level is within our reach.

Agreeing on governance is one thing; community support and uptake is another. But what can the European Health Data Space do to instill trust?” That is the central question of our recent report, A digital health decade: from ambition to action. 4 pillars for a trusted and collaborative health data space.


Communication is key

You don’t know what you don’t know.

Companies, Member States and the EU all play a part in demonstrating to citizens how health data flows can result in tangible benefits.

Health data can help expose inequalities, reveal disparities among underserved communities and address them with efficient measures. It can also empower researchers to find solutions for rare diseases and improve remote healthcare everywhere in Europe.

Health care providers should also play their role in raising their patients’ awareness about the perks of data sharing in helping them make informed decisions about their own health.


Good intentions are not enough

We need to build a transparent and trustworthy network for health data to be processed and shared across the EU. We need to offer patients the legal certainty that their data would remain protected, secure, and would be handled in an ethical way.

We do not have to start from scratch. All the technology needed to achieve this is there. The next goal is to set up a common well-defined governance framework, across Europe, to facilitate consistent and secure use and re-use of health data.

The GDPR already provides a solid framework for data protection that needs to be further harmonised to enable health data sharing. Any digital infrastructure must be required to be GDPR-compliant. From its very design, the European Health Data Space must build in privacy preserving features and rules. 


No one should be left behind, data quality is key

Health data sharing infrastructure should include patients, healthcare providers, payers, researchers, and industry. Involving all healthcare communities and setting clear standards from the beginning will ensure the necessary quality for health data to be usable. Elements like accuracy, transparency and consistency are key to ensuring a high-quality data that can benefit all.

We should make use of the wealth of good practices that already exist across the health industry such as compliance requirements and transparency data practices.


Putting the patient front and centre

In the same way financial and marketing services are becoming increasingly customer-centric, health services should be no exception. Patients should be at the centre of e-health services across Europe. They should be able to easily access those services, communicate with their healthcare providers, receive information in an accessible language and give feedback.

Digital technologies provide solutions for governments that are investing in patient-centric healthcare systems. But in our digital age, we cannot build digital health infrastructure in 27 different national siloes.

As the world is at greater risk than ever of experiencing frequent large-scale outbreaks and global pandemics, we need to act fast to marry the needs of the health sector with the concerns of citizens. The EU cannot afford to get this wrong.

This article reflects the views of the author and not the views of The Parliament Magazine or of the Dods Group

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