Creating a Digital Culture with Health Data (FR0120)

What is the issue that the commitment will address?

Digital technology and data are controversial issues at the moment because people do not fully understand what they cover and lack information and awareness. There are also problems with tracking and using data, and how it is made available to the community, i.e. civil society. These problems are partly due to the fact that each sector – healthcare, environment, transport, digital technology, etc. – has their own way of dealing with the issues, or the focus is on a particular aspect of digital technology, i.e. open data, digital inclusion, etc. When citizens are involved, there is often an emphasis on the digital divide or digital inclusion.

What is the commitment?

Title: Strengthen participation, government–civil society dialogue and information to create a digital/AI culture

How will the commitment contribute to solving the public problem?

To address the situation, the Health Data Hub aims to work collaboratively with local and regional authorities and civil society organisations to design and promote a shared digital culture. This initiative builds on the Health Data Hub’s actions during the third National Action Plan, in particular the consensus-based meeting with France Assos Santé which was designed to collect citizen feedback on raising society’s awareness of sharing health data. By launching a digital awareness campaign for large sectors of the population, the aim is to reduce existing tensions in digital technology and health data.

Why is this commitment relevant to OGP values?

The commitment helps to boost participation because it includes citizens and will encourage citizen-led projects for citizens. It also contributes to transparency by promoting open data and open source.

What are the expected impacts?

The expected impacts include: • Increasing citizens’ knowledge of digital technology and health data, and building their trust in government-led initiatives. • Increasing citizen participation in government-led initiatives. On a national level, this could translate into the number of interactions on a citizen’s digital health record, a project led by the Ministerial eHealth Delegation. • Increasing the number of digital and data projects led by local and regional authorities in line with citizens’ expectations.

Milestones

● Set up a patient information portal on health data to make it easier for users to exercise their privacy rights

● Run an awareness campaign aimed at the general public and patient organisations about the reuse of health data for research