Initiatives like the European Health Data Space (EHDS) can help to open up a new frontier on the journey to an ecosystem powered by global data. If the value of healthcare data is to be fully realised on the scale and at the pace required, stakeholders across the spectrum will need to adjust their perceptions about the value of data and the ways in which it is shared.

Data silos are still commonplace in healthcare, at macro and micro levels: unconnected repositories of fragmented, locally aggregated information that is not only inaccessible across borders, between organisations or facility departments, but can also impede individual patients trying to share data with their own physician.

“The silos in healthcare right now represent a stifling of innovation,” says Jennifer Pougnet, Data Policy Strategy Leader, Personalised Healthcare at Roche. “Research is a global activity in the context of healthcare but sharing data can be very challenging, whether it’s between countries or even across the road.”

Information freedom

Enabling global data flows will liberate information across healthcare systems, advancing care for patients and serving every stakeholder. Pougnet says the key is to see data as a different kind of resource: not as ‘the new oil’, a resource that generally powers the rise of an individual stakeholder, but as a resource that grows in value through being shared.

“The data economy is actually dependent on our collaboration and co-operation with each other in order to fuel innovation,” she says. “The value of data increases in its re-use and its continued use. It is not a resource that depletes. But it needs all the parties to come together in a health data ecosystem, in a way we previously haven’t.”

The benefits of data exchange can be significant across the healthcare spectrum:

• Improved care delivery, stripping out redundant testing, facilitating diagnosis and treatment and, and building a more holistic picture of the individual patient without the need for them to repeat their story at every new touchpoint
• More efficient resource and budget allocation, leading to more sustainable healthcare systems
• Faster, more efficient research, focused on bringing more innovative care solutions for disease prevention, diagnosis, treatment and monitoring to market earlier, with lower development costs.

“Across the continuum, data sharing can enable innovation and progress healthcare to a more sustainable, healthier place,” says Pougnet. “There are so many vulnerabilities in our current processes that could be improved just by enabling some of that connectivity. Empowering people along the stakeholder spectrum with more data will make them more informed – and that’s the biggest benefit of all.”

The price of not proceeding at pace with a new mind-set around data sharing will leave healthcare counting the cost of data as an overhead rather than realising its value and short-change stakeholders throughout the spectrum, from patients and society to facilities, institutions, health systems and governments.

“We’re all in this together, for the long play,” says Pougnet. “It’s a process that will continue at an exponential pace in other industries.”

She suggests that even if change is slow, a threshold will eventually be reached where a data-enabled generation will simply not tolerate their data not being exchanged for the purposes of care delivery. And they will be joined by healthcare professionals, administrators and pharmacists who will question the unconnected information-sharing models that they inherit.

Pougnet points to the Open Data Institute’s theory of change as a pathway for understanding how healthcare stakeholders can begin to shift their perspective to the point at which data becomes a resource that – like farmland - becomes “a resource that is stewarded and used in ways that lead to the best social and economic outcomes for everyone.”

Discovering how to harness the value of data through sharing is an exciting opportunity, but it will also involve embracing the unknown, forging the policy making and business models of the future, and moving away from the rigidity of the linear pathways that healthcare has always seen as best serving patient safety.

Pougnet concedes that agile policy-making creates unease for everyone in the healthcare ecosystem, but suggests that change can happen if data sharing is approached at the level of principles, helping stakeholders come to terms with the ambiguity of such a fast moving space.

Data spectrum

“There is a data spectrum,” she says. “Not all data needs to be open, each set needs to be considered from that level. It should not be an all-or-nothing discussion. The value of data is not lost if you give it away – everyone can win from sharing it.”

“Legal frameworks like the European Commission’s proposed AI regulation acknowledge that by the time that legislation is put in place there will probably be new technologies; we can’t have regulation being a barrier every time we want to innovate and progress.”

Part of the solution will come from well-informed data governance and transparency about how data is aggregated, and how and with whom health data is shared.

“This is about defining expectations,” says Pougnet, “so that when patients consent to their data being exchanged, it is not vulnerable, it is protected, that everyone understands what anonymised, pseudonymized or aggregated data actually means. At the end of the day, it is all about trust and transparency: what are we actually doing with the data?”

If we can find ways to enable seamless global data flows, it will help us to build more advanced clinical research models, address population health issues more comprehensively and, most important of all, enhance patient care.

By harnessing the combined power of data, technology and analytics we can transform healthcare, but our success will depend on our capacity to be flexible. The COVID-19 pandemic has provided a platform for the benefits of sharing health data. However, it is just the latest staging post on a never-ending journey.

“New technologies change context,” says Pougnet. “If we’re doing data sharing right, we should always be interrogating it and asking if this is the right thing for patients and for healthcare delivery. We must be prepared to work with the unintended consequences to achieve greater agility and benefits for all our citizens.”