Logo
Thématique
Economie, emploi et travail
Politiques, institutions et démocratie
Libertés publiques et éthique
Inclusion numérique et solidarité

rapport

Health data: Getting citizens onboard

  • Politiques, institutions et démocratie

Health data: Getting citizens onboard

  • Politiques, institutions et démocratie

DOWNLOAD THE REPORT [English version]

TÉLÉCHARGER LE RAPPORT [version française]

DOWNLOAD THE INFOGRAPHIC [English version]

TÉLÉCHARGER L’INFOGRAPHIE [version française]

 

Amplify acculturation efforts in terms of health data, and more generally in terms of digital health 

Digital health data remains a relatively poorly understood asset, and this difficulty does not only affect uninformed citizens. As shown in this study, when it comes to health data, there are also large acculturation gaps among healthcare professionals, associations in the sector and decision-makers. While this difficulty can be partly explained by a lack of equipment or literacy in terms of eHealth, it is also due to the inherent complexity of this data: health data is extremely heterogeneous and its use raises numerous legal, technical and ethical questions. 

In order to overcome these difficulties, Renaissance Numérique makes four recommendations:

Recommendation n°1 — Engage in massive efforts to acculturate all the players in the healthcare chain.

Recommendation n°2 — Give certain healthcare professionals, such as pharmacists, nurses and doctors, a role in the dissemination of this health data culture. 

Recommendation n°3 — Encourage the stepping up of patient, user and consumer associations on the topic of health data.

Recommendation n°4 — Massify the digital mediation policy.

 

Clarify the governance of health data

Despite the efforts made, particularly as part of the digital component of the French "Ma Santé 2022" (“My Health 2022”) national strategy, the governance of health data remains unclear. Many actors are involved in the steering of public policy in this area, with missions that sometimes overlap. Clarifying the governance of this data means, on the one hand, clarifying the role of the various actors involved in its production, collection, sharing and use, and on the other hand, clarifying the (technical and legal) conditions of production, collection, sharing and use of this data. 

The think tank makes four recommendations in this respect:

Recommendation n°5 — Clarify the roles and strengthen collaboration between the various players involved in steering the public policy on health data.

Recommendation n°6 — Give incentives to the various stakeholders in the healthcare value chain to share their data more widely.

Recommendation n°7 — Encourage a better application of the requirements related to technical interoperability and security standards.

Recommendation n°8 — Move towards a framework that is both protective and more conducive to innovation in the healthcare sector.

 

Put citizens at the heart of health data governance

Redefining the governance of health data should be an opportunity to put citizens at the heart of the process. The growing use of health data for medical care and research affects the entire population, young and old, people suffering from diseases and those in good health. However, patients' associations are very often recognised as the only entities able to represent the population with sufficient legitimacy to be heard by health authorities. Beyond patients and patient associations, right defenders and citizens in general should have a greater say in the development and implementation of public health policy. To this end, Renaissance numérique makes three recommendations:

Recommendation n°9 — Invite citizens to play a greater role in the collective decisions that need to be made on health data.

Recommendation n°10 — Strengthen the representation of citizens in certain governance bodies related to health data (Public Healthcare Insurance System, Health Data Hub), through patient, consumer, user and advocacy associations. 

Recommendation n°11 — Allow citizens to share their data directly to better assess the quality of healthcare and regulate the healthcare system through data.

 

DOWNLOAD THE REPORT [English version]

TÉLÉCHARGER LE RAPPORT [version française]

DOWNLOAD THE INFOGRAPHIC [English version]

TÉLÉCHARGER L’INFOGRAPHIE [version française]