The EU Health Data Space race A bold vision for healthcare in Europe

The European Union is drafting a new set of strategies for the next decade, including the creation of an EU Health Data Space. This coordinated effort would advance the exchange of health data – electronic health records, genomics and disease registries – across Europe, while ensuring privacy over that data.

A robust and secure EU Health Data Space is long overdue. Consider two scenarios of a child growing up in the European Union, and the impact such a data space would have on her health over the next 30 years:

Scenario 1: Sophie just turned seven. She loves math, playing football, riding horses and is fluent in four languages. She arrives at her doctor for a regular checkup. Before the appointment, her doctor reviewed her heart rate, blood pressure, height, weight and sleep efficiency stats for the past months, thanks to wearable technology, a secure electronic health record and a virtual pre-consultation with Sophie’s dad, who works at a local bank. A traveling nurse came by the family’s home the day before the appointment to draw a blood sample. The doctor notes a history of diabetes on her father’s side and orders diagnostic tests. Sophie is healthy, but this will be something to watch in years ahead. Similarly, there’s a history of cancer on her mother’s side.

“No need to worry,” the doctor tells her parents. “Thanks to personalised medicine and genomic data, we can diagnose disease earlier than ever.” He explains that because we share a wealth of secure data on diseases like these all across the EU, we know more about them than ever, so we can often prevent disease before it happens.

Fast forward 30 years. Sophie is the VP of a multinational bank. She has two children and still rides and competes recreationally in stadium jumping. Thanks to regular testing, her doctor noticed small changes in Sophie’s insulin levels just before her 14th birthday. Through innovations in personalised healthcare and monitoring, doctors were able to prevent her from developing diabetes. Sophie’s mom was diagnosed and treated for breast cancer when Sophie turned 18. With early diagnosis, a secure and robust EU data system, and precision therapies based on genomic insights, her mom is cancer-free and now a grandmother. Sophie has yearly tests to detect even the smallest changes at a genomic level.

Scenario 2: Sophie just turned seven. She loves math, playing football, riding horses and is fluent in four languages. She arrives at her doctor for a regular checkup. The doctor is running behind schedule and somehow Sophie’s file was misplaced when the medical office moved locations. Her dad, who took time off from his job at the local bank to take Sophie for her appointment, will need to complete a new medical history form by hand. He can’t reach Sophie’s mom to help recall their family disease history, so he fills the form out as best he can.

He grumbles that if banks can safely move money around the world electronically, there surely must be a way to do it with medical records and data. Later, a nurse comes to weigh Sophie, measure her height, take her vitals and then scribble them into the new file. When Sophie finally sees the doctor, he notes a family history of diabetes in the form her dad completed. Sophie is healthy, but this will be something to watch in years ahead, he says. He apologises for the delay, and as he heads out to see his next patient, Sophie and her dad rush off, late to her language class.

Fast forward 30 years. Sophie is the VP of a multinational bank. She has two children. She still dreams of riding horses, but gave it up in her teens. Just before her 16th birthday she was diagnosed with diabetes. Juggling riding lessons and school, with intense monitoring of her blood sugar, meals and regular insulin shots, was too much for the family to manage.

Sophie’s mom was diagnosed with late-stage breast cancer when Sophie turned 23; she passed away the following year. Sophie promised her mom she would get a yearly mammogram, and she follows a strict diet and exercise plan to manage her diabetes. But between her job, a family relocation, and the kids, it’s been two years since her last mammogram. When she calls her doctor, the next available appointment is three months out. She asks her previous doctor in a different country to send her medical records to her new doctor, but they use different electronic medical records systems, so her doctor can’t read the data. A diligent person pulls the file and mails it. Three months later, following Sophie’s mammogram, a radiologist orders an immediate biopsy.

These scenarios are imagined, but the stakes are very real

The EU Health Data Space system would support primary care as well as the development of new treatments, medicines, medical devices and services. Roche, the world’s largest biotech company, shares and supports this mission, which could ultimately improve patient care and access for all, and lower costs to society. A crucial part of achieving this bold vision hinges on harnessing the power of data for the greater good.

Why data matters

Personalised healthcare has the potential to revolutionise patient care in the next few decades. To a great degree, it already has, but a truly transformative healthcare system needs a robust, unified and secure bank of data. A wealth of data is already out there, but the public and private sector will need to work together to seize the opportunity to create an EU Health Data Space.

“The challenges we face today – affordability, sustainability and access – are not new,” says André Trottier, Global Head for Personalized Healthcare Policy. “Creating this system will accelerate our ability to pioneer a process that securely leverages data across the EU member states.”

And the benefits to transformation are enormous. The EU Health Data Space would give European countries many opportunities to advance health care. A large, secure data set makes precision, evidence-based, personalised care a reality. This also allows the EU to remain at the forefront of innovation, attracting the brightest minds and staying competitive as the world evolves towards more data-driven ecosystems. It is a chance to act collectively to protect and improve health and wellbeing, while ultimately lowering costs to society.

But we’re falling behind

The pandemic revealed how decentralised and disconnected the EU member states are from one another when it comes to healthcare. The limitations of the current system became clear. Only about half of the countries in Europe have a national electronic health record, and in many cases the fundamentals of modern, robust data infrastructure are missing.

During the first months of the COVID-19 crisis, for instance, the use of fax machines to report and count national cases was common. That created a lag in reporting, because total case numbers were updated in batches, rather than instantly. In Italy, an EU country hit hard by the first wave of the pandemic, data sharing among hospitals and provinces could have helped hospitals and governments identify and track the rapid spread of the disease earlier.

Andre Trottier, Head Personalised Healthcare Policy Strategy

"COVID-19 is tragic, but one silver lining is that it’s shown the obvious gap in data and the problems that creates,” André says. “Our global response to the pandemic has been completely stifled by questions of sharing of data – the availability of it, whether it's good quality, and even testing and diagnosis. Governments can't ignore this gap anymore.” He acknowledges that “on the positive side, the crisis has been a catalyst for more acceptance to building this data infrastructure, and acceleration of acceptance of digital tools.” This data infrastructure will require government investment, André explains. “There is a cost, but there's so much potential for much better patient benefit, which in the end reduces costs. A healthier population is a less costly population.”

Even beyond the pandemic, a connected system would help eliminate inefficiencies and reduce waste by making healthcare much more targeted. “We’ll reduce much of the second-guessing or trial-and-error approach to healthcare, where it’s often a process of elimination – trying one thing, and if it doesn’t work you try a different route,” André says. “This system will make personalised healthcare a reality.”

Imagine a pilot of a big jumbo jet who doesn’t have all the instruments and real-time data that tell him where the wind is coming from, where he’s supposed to land, where he’s currently flying, and where other planes are in relation to him. Doctors today are a little like pilots flying without the benefit of all that data. Their ability to provide the true, full benefit to the patient is compromised. For a patient, the more data that exists about them and about people like them, the better. That data provides insights about treatments and the path forward, and it increases the likelihood that decisions made on their behalf will be right. Europe, with about 450 million people, has the scale to actually derive these insights and help personalized healthcare really take off.
André Trottier
Global Head for Personalized Healthcare Policy

How it would work

The European Health Data Space proposal by the EU Commission would promote health data exchange across Europe for better healthcare, better policy making and better research and innovation. There would be clear governance, rules, and quality standards while ensuring strict protection of the privacy of citizens.

André says electronic banking is an example of how, and why, a shared EU health data program can also work.

“You don’t have to worry every time you do your banking; it just works,” Andre says. “Think about the amount of money in these accounts. Banks found a way to keep the information hyper-secure. You don't have to fill out a form every time you go to a different branch. So it's technically completely doable with health data, and has obvious benefits.”

Long overdue opportunities

“We have a stated mission to deliver more patient benefits at less cost to society,” André says. “Information exists in the form of data that can help people. We need to translate that data into actionable information. Making this a reality is an obligation for anybody who works in healthcare, and we all have a role to play in making that possible.”

Roche supports data sharing for the greater good

  • An ecosystem approach; data shared for broad patient benefit across the care continuum

  • Access to and insight from health data to enable personalised healthcare and improved outcomes across the EU

  • Strict rules ensure data is secure, individual rights to privacy are protected

  • Equal and consistent rules across private and public sectors, and academia

  • Broad, inclusive rules and governance to improve interoperability, define quality data standards and ensure transparency

  • Sustainable growth, more patient benefits and less cost to society

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