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Explainer: The European Health Data Space

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European Health Data Space

On Tuesday, the European Commission launched the European Health Data Space (EHDS). The proposed legislation promises to improve data access for patients, doctors, researchers and policymakers.

The EHDS is the first of its kind worldwide and ‘a milestone for our digital transformation and a real revolution in the European medical history,’ according to EC vice president, Margaritis Schinas.

The EC claims that the EHDS will save the EU around €11 billion over ten years.

The proposal will now need to be approved by the European Parliament and national governments.

Background

The healthcare industry generates huge volumes of data every year and the Covid-19 pandemic saw a massive uptake in the use of digital health tools which have generated an unprecedented volume of information.

But complex obstacles have hindered clinicians and stakeholders from leveraging this information.

The EHDS will provide a health-specific data sharing network establishing common rules, standards, practices and infrastructure for the use of this data.

What it means for patients

Patients will be able to access their health records wherever they are and will have greater control of this information, in line with EU data protection law.

Doctors will also be able to access their patients’ medical history across borders to help support treatment decisions and diagnosis.

Sharing information across borders will minimise the risk of tests being duplicated, speeding up treatment and saving on healthcare costs.

What it means for research

Researchers will have access to masses of high-quality data. They will also be able to utilise it more easily and with fewer cost considerations.

A data access body will ensure that patient privacy is protected.

What it means for regulation and policy

Easier access to health data will support more evidence-based policymaking across healthcare systems.

Industry reaction

Hamish Grierson, Co-founder & CEO of digital health company Thriva, told Health Tech World:

“This is a critical initiative.

“As we move away from a reactive model of healthcare and unlock new models that utilise new technologies designed to empower individuals to proactively manage their health, ease of data sharing will be integral.

“The move to person-centric models of care won’t work if vital data lives in silos.”

Dr Patrick Short, CEO and co-founder of genetic disease research healthtech startup, Sano Genetics, told Health Tech World:

“The European Health Data Space is a great step forward.

“Patients will have easier access to their own data, and a more seamless healthcare journey too.

“It’ll also benefit researchers, who will be able to make discoveries by accessing data at a larger scale and across borders.

“For rare disease patients, communities, and researchers in particular, pooling data across borders will mean that, for many diseases, it’ll be the first time enough data has been available to make discoveries and develop new treatments.”

Johannes Schildt, CEO of digital healthcare provider Kry, said:

“Cooperating on the EHDS means better data and earlier insights into chronic diseases such as cancer at a population level.

“If we choose to ignore the benefits of technology and of working together, then it’s patients that lose out.

“The EHDS proposal has the potential to positively impact the lives of hundreds of millions of people – that’s the prize, and the ambition that Kry would like to contribute to.”

Arthur Dauphin, a digital project manager at consumer organisation France Assos Health, told Euronews:

“Health users are very inclined to share their health data, but not just anyhow.

“And so it is true that ultimately this new proposal is how this European health area can create a space of trust in which we could share its health data for the benefit of all because it is really the benefit for the greatest number.

“There is also a strong expectation on the part of citizens and so this is how this space can contribute to it, whether it is on questions of security, on questions of redistribution or the value of this data.”

Kimmo Rissanen, lead product owner at Kanta Services, told Politico:

“There is a lot of expertise in all European countries, and it’s not only in Brussels,.

“We need to work together. It’s not Brussels alone that makes this thing work.”

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  1. Pingback: Why it’s time to bring digital transformation down to earth

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