Guest article by Arthur Dauphin, France Assos Santé
Health data has always been a topic of interest for patients’ associations. As an organisation representing and defending the interests of patients and health system users, France Assos Santé advocates for better care through research, and for better health systems through data driven governance. In this sense, it comes with no surprise that the proposal for a European Health Data Space (EHDS) has caught our attention.
As complex and technical as it may seem, we have a responsibility to address the impacts of this proposal. While our reflections and positions are still under construction, we view the EHDS as an opportunity for all EU members and citizens to benefit from a robust framework. Establishing ground rules for health data use and ensuring health system users’ access and control over their own data is in line with our advocacy.
However, the European Health Data Space will be quite demanding for governments and public institutions. The level of digitalisation of health systems will be a challenge in itself, as the standards expected in practice are high, albeit necessary. Implementation at the national level is likely to be one of the main difficulties of the proposal.
As a civil society stakeholder, we have been involved with the French Health Data Hub to pursue commitments under the Open Government Partnership. We have found through these common goals and associated projects a new way to cooperate for creating a health data culture and promoting open data. We urge future stakeholders, and in particular the Health Data Access Bodies as described in the proposal, to adopt strong commitments, to include civil society, and to ensure genuine participation of health user representatives as ubiquitous and independent stakeholders.
Ultimately, health system users and citizens expect this new system to be trustworthy. In a world where malicious interests in our health data are on the rise, and fears of digitalisation persist, this trust will have to be earned by public actors. Therefore, the endpoint of the proposal should not be underrated: providing every user with free access to and control over their health data for healthcare purposes is a major issue and potentially life-changing for many. When it comes to health data re-use, this is an opportunity to create a transparent and shared system where the contribution of users as data providers, is recognised and justifies sustainable investments by data users in sharing and publicising what has been achieved.
The alignment of shared European ethical values with the implementation and technical requirements of the European common data market may be the missing link to fully harness the potential of health data for the greater good, alongside indispensable and ambitious digital health literacy policies and investments.
Disclaimer: the opinions – including possible policy recommendations – expressed in the article are those of the author and do not necessarily represent the views or opinions of EPHA. The mere appearance of the articles on the EPHA website does not mean an endorsement by EPHA.