Do data dilemmas impede digital health?

Effective use of health data is vital but the practicalities are mired in problems, according to experts speaking at an event held in Brussels yesterday.
10:06 AM

Photo: Soumil Kumar

The launch of a proposal on the EU Health Data Space, expected in early May, forms the cornerstone of wider European ambitions on digital health, and marks the fruition of efforts invested by policy-makers over the course of several years.

At an event in Brussels, organised by Politico, some participants wondered what this would look like in practice. They said that funding gaps, a skills shortage and inadequate interoperability prevent data from being shared and used.   

WHY IT MATTERS

Speakers at yesterday's event included Rachel Dunscombe, visiting professor and director of the digital health leadership programme at Imperial College London, Christian Lovis, professor and chairman of medical information sciences at the University Hospitals of Geneva, Edouard Duchesnay, research director in data science at CEA, a French research organisation, and Saila Rinne, head of eHealth, Well-being and Ageing at the European Commission’s DG Connect.

Rinne outlined how Europe’s investment in health data forms part of a wider strategy that builds on the Data Governance Act and Data Act, filling in remaining gaps. It aims to make patient information digital and interoperable across systems, regions and borders, she said.

“Of course, it’s a huge challenge but if we succeed, the benefits are also huge,” she said. “We are talking about better prevention, prediction, better diagnostics, making treatments more equal across different regions, and so on.”

ON THE RECORD

The ability to use data in healthcare is now a moral imperative, Dunscombe suggested. Not only does it improve accessibility and quality of treatment but it also allows providers to deliver world-leading care. “What we have seen during the pandemic is that data can save lives and improve lives,” she said.

But hurdles in areas like financing and recruitment impede the industry’s ability to take advantage of data. Rinne pointed out that data scientists cannot necessarily join a hospital and get quickly to work; their expertise must be embedded into systems so that solutions meet providers’ needs. In the UK, Dunscombe said a dearth of 32,000 data science, AI and digital health workers is expected by 2030.

Duchesnay pointed out that academic salaries cannot compete with those offered by the private sector, making it hard to fill research positions. “It’s really complicated to hire people with adequate skills,” he said.

THEIR TAKE

Nor are these the only challenges to digitising health. For Christian Lovis, interoperability is key. During the pandemic, Switzerland was inundated with data—too much of it, and of varying quality, which made it difficult to interpret, he said.

A draft text of the EHDS proposal acknowledges “significant deficiencies” in interoperability, which the EHDS will gradually address. In the meantime, “If the data are interoperable it may be complicated to share them,” Lovis says. “But if the data are not interoperable, even if it’s easy to share them, it’s useless.”

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