Training and learning tools for health data use (FR0083)

What is the public problem that the commitment will address? Health data plays an important role in shaping a more effective, tailored and human-centric healthcare system. This involves creating public-interest projects intended to improve public health as well as ensuring citizen uptake. Citizens, associations of healthcare system users, and more broadly all stakeholders within the ecosystem must be given a more active role in understanding and using health data. Adopting a transparent approach is the most effective method for providing the necessary skills to those in the health data field. This transparency is primarily the result of the entry into force of the GDPR, which makes this principle mandatory, and sets out its guidelines in Articles 12, 13 and 14. A transparent approach consists in particular of providing information on research projects and individuals’ data rights in a clear and easily accessible manner. However, being informed is not enough for people to feel the information directly affects them, understand it or get involved. This is why the next step to providing information is helping people to understand it with special training. The co-development and the dissemination of learning tools to introduce people to data is a further step in allowing individuals to play an active role in their data. It not only lets people stay informed, but also gives citizens and associations of healthcare system users the opportunity to get involved in health data. This involvement could lead to citizens embracing this matter and developing citizen-specific uses: for example, they themselves may submit research 123 projects, or put in place initiatives much like the CovidTracker tool.

What is the commitment? The Health Data Hub is committed to contributing to forming a health data culture that allows citizens to assume a proactive role if they so wish. This entails the provision of learning tools that let all stakeholders, depending on their level of understanding and expertise, get to grips with health data (in terms of the related issues and uses) and locate the information required for their projects. There are various resources that are designed to share the initial information for using the national health data system (SNDS), to make it understandable to everyone and to facilitate its use. A collaborative strategy with civil society will be put in place. A partnership with France Assos Santé, and its 85 member associations, the Ministry for Primary and Secondary Education, the French Association of Pharmacy Students and the Renaissance Numérique think tank will mean 150,000 people per year will be involved in this initiative.

How will the commitment contribute to solving the public problem? SNDS data is currently restricted to experts, and the goal is to make this data available for citizen use. To do this, the plan is to support civil society in reusing this data (patient associations, journalists, citizens etc.). Several training sessions will be organised. 1. Training sessions for the general public for a better understanding of the framework and issues relating to health data, and in particular the SNDS. This training is based mainly on the questions citizens have about their health data and the uses of this data for research. An SNDS training session for citizens will last 30 minutes for each module of this training course. Start of preparation stage: January 2021 End of preparation stage: December 2022 Start of online launch (first resources made available on a continuous basis): October 2021 2. Training sessions for people familiar with using health data and with an interest in submitting a research study. This training will primarily provide information on SNDS data (including open SNDS data) and on regulatory procedures for accessing the SNDS. 124 -> information sessions on the SNDS and the access procedure will last two and a half hours (in a single session) Start of preparation stage: March 2021 End of preparation stage: October 2021 Start of testing phase for training: June 2021 3. Training sessions for future contributors to open source tools. This training is for any individuals wishing to contribute, via Gitlab, to the SNDS’s collaborative document repository either by proposing new content or by flagging up errors for example. Collaborative editing days are also organised to support contributors -> Use Gitlab to contribute to the SNDS's document repository - Length: 3 hours (in a single session); Collaborative editing of the document repository - Length: one day Start of preparation stage: September 2021 End of preparation stage: October 2021 Start of testing phase for training: October 2021 4. Training sessions exclusively for internal and external HDH users responsible for processing SNDS data as part of the project launched on the HDH tech platform. The operability of this training is enhanced, with: a presentation of this system’s structure, the organisation of its main databases and the corresponding login details; a description of the main solutions and concepts for performing an extraction; application via use cases on the basis of summary data sets. A training session can then be made available externally on the HDH. -> HDH technical operator training - Length: one day 5. Training provision strategy: Civic training provision strategy: - Support for accessing the HDH website - Talks under way with the Ministry for Primary and Secondary Education to bring training to upper secondary schools - Presentation to be given on the request of structures - Incorporation into university degrees (talks under way) 125 Provision strategy for other training: - At dedicated events

Why is this commitment relevant to OGP values? Given the draft decree relating to the SNDS, that sets out the minimum basis of information that the HDH is required to provide, one of the HDH’s goals is to publicise and make people understand the HDH’s work and research projects, reach out to data users (research project leaders), data controllers (database holders) and citizens (including patient associations). Another goal is to inform people of their rights. The existing resources on data are not freely accessible, and are restricted to experts. The aim of our initiative is to release and adapt information.

Milestone activity with a verifiable deliverable Start date End date Training for the general public: training modules January 2021 December 2022 Training sessions for people familiar with using health data and with an interest in submitting a research study March 2021 October 2021 Training sessions for future contributors to open source tools September 2021 October 2021 Training sessions exclusively for internal and external HDH users responsible for processing SNDS data as part of the project launched on the HDH tech platform

Action Plan Review

Commitment 33. Develop a health data culture

● Verifiable: Yes

● Does it have an open government lens? Yes

● Potential for results: Unclear