What if Geneva became a global centre for health data governance?

Données Foraus, Sensor Advice ¦ Visualisation: Heidi.News, nor/mir

Throughout the course of this year, the foreign policy think tank foraus and Sensor Advice , a Zurich consultancy specialising in discourse analysis, conducted workshops on the use of health data and digital technologies with citizens and key health actors in Switzerland. Their new study “ Health Data Governance: What's in it for Switzerland? ”, which will be presented on today makes twelve recommendations for better governance of health data. The authors have shared the results of their work.

Digital technologies promise to profoundly transform the health sector, both in Switzerland and in the rest of the world. They have the potential to improve access to health services and make them more efficient. We can clearly see the importance of better use of health data to carry out targeted health policies during a global health crisis such as that caused by Covid-19. In this transformation process, health data plays a central role. But the highly sensitive nature of the latter generates challenges and risks that call for governance at the global level.

Twelve recommendations for action for better governance of health data. In 2020, we organised discussions taking the form of various participatory formats - ( PoliTisch and Policy Kitchen ) on the theme of the use of health data and digital technologies with citizens and key players in the field of health in Switzerland. On the basis of the results obtained, we have formulated twelve action recommendations for better governance of health data. Here is an excerpt:

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Extracts of the twelve recommendations, Foraus data, Sensor Advice ¦ Visualization: Heidi.News, nor / mir
The topic of governance is complex and does not stop at data protection regulations. It has many dimensions. We have identified five: political, societal, ethical-legal, financial and technical. We will focus here on the potential role of international Geneva as a future centre for global governance of health data and on the need for citizen participation in this area.

International Geneva as a center of global digital governance. Our discussions have shown that International Geneva has the potential to become the centre of global governance in health data. In particular thanks to the large number of actors active around global health issues and digital technologies already established in Geneva. The Confederation has also recognised this potential and identified the development of digital governance in Geneva as a strategic pillar in its Digital Foreign Policy Strategy 2021-2024 published last November. The International Digital Health & AI Research Collaborative initiative (I-DAIR), recently launched in Geneva and aimed at serving as a platform for international collaboration in digital health research is an excellent example of initiatives to be supported to position Geneva as a global hub for health data governance.

Read: I-DAIR promises responsible solutions from new health technology

From this perspective, Switzerland should also participate in the development of a legal framework for the use of health data. All the more so since the idea of ​​an international treaty negotiated within the framework of the WHO ( International Health Data Regulation ) is gaining ground in Geneva. The participants in our discussion workshops expressed the wish that Switzerland would support this process.

In a context of uninterrupted technological innovation, the stakes are high for Switzerland. How we frame our use of health data in the future will also determine our relationship to our health and to digital technology at large. Switzerland and Geneva can and must play a major role in this regard.

A citizen-centric health data ecosystem.   Covid-19 has shown the general public the vital role that accessible and qualitative health data can play in improving public health and potentially saving lives. Nevertheless, it also exposed the skepticism of a certain part of the population regarding the use of personal health data.

To counter this skepticism, it is necessary to promote digital competence and health data literacy and include the population in discussions around the governance of health data. Citizens should be able to use and manage their health data more autonomously in the future. Ultimately, the objective should be the establishment of a health data ecosystem centered on citizens through the promotion of participatory data exchange platforms, from which the field of health could benefit in particular. research.

Moritz Fegert is International Digital Health project manager at foraus, Isabel Knobel is project manager at Sensor Advice.

To find out more about the other recommendations of the study and to continue the discussion, the forum, Sensor Advice and the parliamentary intergroup "global health" invite you to their online launch event on Wednesday December 16, 2020 (19:30 to 21:00) : “Health, data, digitization: Is Switzerland missing the big opportunity?”.

This article was originally published in French on Heidi.news