Trust, ethics lie at heart of health data sharing, health professionals say

Health data is a valuable resource and a more efficient sharing of it could improve our health systems significantly. On the other hand it requires proper consideration of trust, ethics and security. [Shutterstock/PopTika]

A more efficient sharing of valuable health data could improve our health systems significantly. But according to health professionals, this requires proper consideration of trust, ethics, and security.

To make the health sector stronger and more effective, health data is being pushed as a tool to aid innovation and allow better treatments for diseases. One big hurdle is the protection of data and ways to make sure it is being used for the common good.

That was part of the discussion at an event organised by the French Conseil National de l’Ordre des Médecins (CNOM) and the Standing Committee of European Doctors (CPME) in the context of the French EU Council Presidency, which initiated the European ethical principles for digital health, adopted in February.

In this regard, the European Commission will soon propose a new governance framework for data – the European Health Data Space, and a leaked draft of the proposal was reported by EURACTIV in March.

The main goals of the new framework are to make the healthcare sector more efficient and advance scientific research in the telehealth area, and “unleash the health data economy”, fostering the development of new digital health services and products.

“We want to ensure that the ethical principles that are vital for eHealth are respected,” Dominique Pon, representing the French Ministerial eHealth Delegation, said in his opening statement.

“Our ambition in France is to develop a humanist digital health framework. France and Europe have a humanist tradition. At the very heart, health is a sector where humans are looking after other humans,” he said, adding that ethics should be at “the very forefront of our efforts”, with the principles of doing good and avoiding harm.

“Sovereignty is also important. (…) We won’t be in charge of our own destiny [in terms of] health in Europe if we don’t have these major health platforms under control, and there’s only one way of managing these eHealth platforms and that is building our own infrastructure. That is the only way to remain in control,” Pon said.

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How to put trust at the centre?

Gérard Raymond, president of France Assos Santé, an organisation representing patients’ interests in France, said “patients in France must always be invited to discuss these issues very close to their heart, and that is their health data, which reflects the state of their health”.

Raymond highlighted that in order to build trust between digital tools, digital strategies, health professionals and patients, there must be respect for ethical principles, humanist principles, transparency and simplification.

“Generally what is very important for [patients] is that they are reassured that they have trust in how their data is being stored and used,” he said.

In that context, it is important to be able to trust that collection and storage happen anonymously to help promote research for improving healthcare systems.

“[They] will only have that trust if we are partners in creating and implementing these tools and in developing the rules that govern,” Raymond said.

There are many challenges to building trust, according to Jessy Pollux, data protection officer at CNOM, whose job is to navigate between interests, protection of patients’ data and the increasing amount of laws ensuring the safe use of data.

“In the current context, there are [also] cyber threats… Our data is very vulnerable and can be very valuable for cybercriminals,” Pollux said.

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Getting platforms under control

Ignacio Alamillo-Domingo, digital transformation director at the Spanish Medical Council, said that during the pandemic “we’ve seen a massive, massive emergence of health platforms”.

Many of these health platforms are unregulated and do not ensure proper safety. For them, Alamillo-Domingo set out the main risks factors identified in different member states for digital health.

“Firstly, the risk of insufficient identity assurance or even identity theft, both for doctors and patients… We have been observing that today, in many of these platforms, if there is not really any assurance that a medical doctor actually is a medical doctor. And this is a problem because in many cases, these digital platforms are being used to issue prescriptions,” he said.

He also highlighted the lack of validity of medical certificates and other legal medical documents, as some of those platforms “are adopting different types of electronic signatures”. By not having qualified electronic signatures “we face the risk of producing medical documents that are not legally sound”.

The third risk is not being able to share electronic health records securely in the EU “due to the limitations of the current approach we have for the connection of these platforms”.

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[Edited by Zoran Radosavljevic]

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