Promote open source and open science in health (FR0084)

What is the public problem that the commitment will address? The use of health data is currently restricted to a small number of experts because of its compartmentalisation, but also its complexity. Understanding data, its organisation, as well as its biases, potential and limitations, requires considerable efforts from project leaders, which is why HDH offers a way to pool knowledge.

What is the commitment? In 2019, the HDH and its partners ( Directorate of Research, Studies, Assessment and Statistics, Santé Publique France, the National Health Insurance Fund, the National Agency for the Safety of Medicines and Health Products, the Regional Health Agency, the Technical Agency for Information on Hospital Care, etc.) made an open collaborative document repository publicly available, comprising notebooks for learning how to use the SNDS, a summary data generator, a number of subject-specific factsheets that together detail the specific features of the SNDS, an open data section listing all the accessible health data resources and the programmes used by data scientists and statisticians. Rounding off the document repository are an interactive dictionary allowing users to view data schemas in graph form and a help forum. The objective is to democratise access to knowledge and increase the number of 128 contributors and users taking up this initiative.

How will the commitment contribute to solving the public problem? In the last six months, the number of page views (8,474 in May 2021, 4,485 in December 2020) and of visits (6,259 in May 2021, 3,146 in December 2020) doubled, with currently about 400 views per day. The document repository created in early 2020 comprised 37 subject-specific factsheets at end2020, half of which were updated during the year. The source code for the dashboard displaying the access keys for health data in France available on the HDH website can also be found. These tools, the source codes of which are publicly available in the Gitlab repositories and are maintained on a daily basis by the HDH team, are also enriched by HDH’s partners and users. The Health Data Hub hosts and maintains a help forum for new health data users and experts who would like to have a discussion with other members. Anyone can join this forum, and 539 posts were published in 2020, and 149 since early 2021. The tools and the initiative are regularly presented to the Meetup community totalling 1,350 members in June 2021, with more than 300 new members joining in the last six months. Since 2019, 26 Meetups have been organised. These events draw in an average of 120 attendees, and the presentations can be viewed later on the Health Data Hub’s YouTube channel. To step up the take-up and rollout of this approach, the following actions will be carried out: 1. The online publication of a map of SNDS experts to help users get in touch. September 2021. 2. The launch of a call for expressions of interest for funding the development of algorithms designed to facilitate data use, which will be open source, a condition for their dissemination. Launch in July, projects between October 2021 and early 2023. 3. Sharing of data in a more reusable, international format by end-2021, relating to 129 initial work carried out during the health crisis to promote the interaction of various data sources at national and international level.

Why is this commitment relevant to OGP values? The implementation of this commitment and these various projects will ensure that anyone can access the knowledge contained in the databases, which is currently only available to certain experts. This commitment has been the subject of a collaboration with the Renaissance Numérique think tank. Further information Funding the open source algorithm library: €400,000. Two people employed for the open science initiative, one in the process of being hired, and ten or so HDH members also involved The open source team is regularly in contact with Etalab, the French government’s task force for data policy.

Milestone activity with a verifiable deliverable Start date End date Online publication of a map of SNDS experts January 2021 September 2021 Launch of a call for expressions of interest for funding the development of algorithms designed to facilitate data use October 2021 January 2023 Sharing of data in a reusable format relating to work carried out during the health crisis January 2021 December 2021

Action Plan Review

Commitment 34. Expand the practice of using open source code and data, and promote open science in health

● Verifiable: Yes

● Does it have an open government lens? Yes

● Potential for results: Unclear