Citizen feedback on health data governance (FR0080)

What is the public problem that the commitment will address? Healthcare is a sector in which personal data collection and use raises sensitive issues for several reasons. Significant efforts are made by public authorities to promote an open and innovative use of this data, all the while increasing the opportunities for data processing by means of cross-referencing different types of databases. This holds great promise in terms of prevention, diagnosis and the follow-up of diseases, as well as in streamlining innovative treatment and services for patients. However, it also raises the question of data security and privacy. One of the issues with respect to civil society is the ability of individuals to effectively use their health data and assume an active role in this area. One way to achieve this is to give them regular and varied opportunities to give feedback.

What is the commitment? The commitment entails the regular organisation of platforms for discussion in various formats (surveys, open-ended interviews, vox pop, working groups, focus groups, consultation or consensus workshops etc.). These feedback sessions are one of the stages that lets citizens play an active role in health data. This feedback will help: - produce targeted and adapted information on project studies, data-related issues etc. - adjust data governance by factoring in the needs and expectations expressed 115 The findings from these feedback sessions are systematically made available to the public in a variety of appropriate formats: Health Data Hub website, brochures, videos, etc.

How will the commitment contribute to solving the public problem? The Health Data Hub will develop a citizen feedback programme for every year, in close cooperation with a citizens’ committee. 1. A Europe-wide online consultation with citizens involving several countries, as part of a joint initiative of the European Commission to collect respondents’ views on data and identify expectations relating to civic engagement in relation to a European e-Health area 2. A working group comprising patients and members of civil society (e.g. journalists) to draft the Health Data Hub’s commitments in relation to health data 3. A working group comprising students to draft an information note sent to data controllers and the extension of the range of services to everyone 4. Three focus groups to gather opinions on secondary use initiatives for health data 5. A preliminary study conducted by means of individual one-hour interviews with ecosystem stakeholders to survey their views and expectations for a European e-Health area

Why is this commitment relevant to OGP values? These feedback sessions will help to produce targeted and adapted information on project studies, datarelated issues etc. By understanding respondents' views, needs and expectations, and by taking on board misunderstandings, it is possible to produce transparent, universally accessible, clear and readable information. 116 These feedback sessions will shape data governance by factoring in the needs and expectations expressed.

Milestone activity with a verifiable deliverable Start date End date A working group comprising patients and members of civil society July 2019 July 2020 Three focus groups to gather opinions on secondary use initiatives for health data January 2021 December 2021 A working group comprising students to draft an information note sent to data controllers and the extension of the range of services to everyone April 2021 November 2021 Preliminary study conducted by means of individual one-hour interviews June 2021 July 2021 Europe-wide online consultation with citizens November 2021 March 2022

Action Plan Review

Commitment 30. Launch of a citizen feedback initiative

● Verifiable: Yes

● Does it have an open government lens? Yes

● Potential for results: Unclear