Data Saves Lives

This multi-stakeholder initiative, established 5 years ago, seeks to raise awareness about the importance of health data, invests in improving the general understanding of its use, to foster a trusted environment for dialogues on responsible data practices across Europe. You can learn more about this initiative by visiting: https://datasaveslives.eu/aboutdsl.

Hosted by the European Patients’ Forum (EPF), the two-day event brought together a diverse range of voices for dynamic panel sessions on vital topics for the future of healthcare, including the importance of key stakeholder dialogue in enhancing trust, the role that patients play in all steps of the digitalization of health and care, the meanings and pathway toward empowered patients, and how Health Technology Assessment (HTA) can shape the future of patient-centered care. Participants underscored that health data has the power to save lives, with patients leading the way, so that their values get heard and incorporated. While digital tools and technologies are essential enablers, the ultimate aim is clear: to improve health and care for all.

Complementing these discussions, highly interactive and hands-on workshop sessions focused on the European Health Data Space (EHDS), ensuring data protection in data reuse, the effectivity of patient registries, and role of education in earning trust - an elephant in many rooms, but not this one. A key takeaway from these discussions was the recognition that trust cannot be controlled, imposed, or expected build through full transparency. Rather, one must become trustworthy through engagement in structural ways, allowing patients a say in the decision-making. Moreover, there is much work ahead in shifting from passive to active patient involvement—a responsibility that rests on all of us, and one that the VPH Institute is proud to actively pursue.

Through engaging workshops, thought-provoking panels, and poster sessions, the event provided valuable opportunities for learning, collaboration, and networking. These conversations have laid the foundation for an even stronger, more interconnected Digital and Healthy Europe.

Take away for the VPHi Community:

• The VPH community must stay informed about initiatives like Data Save Lives, as they offer a platform for deepening our understanding of the social implications of the use of health data and the hows of facilitating stakeholder dialogue.
• This is of particular importance especially because the scientific community looks forward to the upcoming European Health Data saves legislation and rollout.