EDITORIAL - Health data: taking a step back

The editorial team at SIH Solutions magazine would certainly agree: data is the future of healthcare.

Demanded by researchers, enriched by publishers, scrutinized by healthcare professionals, and encouraged by national programs, health data is receiving intense attention. For the past fifteen years, the progress it has enabled has been immense. It is the raw material for numerous new tools, particularly those stemming from artificial intelligence, which have revolutionized precision medicine.

While invaluable, its personal and sensitive nature must not be overlooked. Therefore, it must be protected and regulated. The Ségur du Numérique (a major French government initiative), the Health Data Hub, and other government initiatives are all working to encourage its use and coordinate practices, but now is the time for reflection.

This is why the National Consultative Ethics Committee (CCNE) and the National Steering Committee for Digital Ethics (CNPEN) took it upon themselves to develop an opinion entitled “Health Data Platforms: Ethical Issues,” published on May 9.

Organized around three sections (the platforms, the concept of sovereignty, and consent), this document provides an overview and submits 21 recommendations on the subject. Among them, the committees call on public authorities to “become more involved in the development of standards and norms for formatting and structuring health data.” Recommendation No. 10 aims to ensure that “international partnership contracts involving health data include clauses guaranteeing that non-European actors respect the fundamental principles of the GDPR,” in particular.

On the monetary aspect, the non-commercial nature of the data is strongly reaffirmed. On the other hand, the report’s authors suggest that “funding for health data platforms based on their investment and operating costs, and pricing adapted to different users, particularly for scientific research of public interest,” should be studied. This could include, perhaps, the possibility of requiring companies that have achieved economic success through the use of this data to share a portion of their profits with the platforms, “by voluntarily signing a charter guaranteeing their reputation.” Finally, regarding consent, the report recommends “developing information for individuals about the use of their health data and existing platforms, tailored to their digital literacy, through various channels and in the places they frequent.”

While the 21 recommendations do not raise entirely new issues, they have the advantage of clarifying and referencing sensitive questions surrounding health data. They thus highlight areas of concern that must remain on the radar of policymakers. It should be noted, however, that as its name indicates, the CCNE (National Consultative Ethics Committee) issues advisory opinions. The report is therefore not legally binding.

Furthermore, the timing of this opinion is questionable. Some will argue that the discussion surrounding data needed time to mature. Some fifteen years after interest in it first arose, we now have the necessary perspective to assess the opportunities and potential pitfalls of this resource. But things are moving quickly, and the CCNE and the CNPEN risk arriving a little too late on certain points…

Marion BOIS