DiCE acknowledges the importance for patients and patient advocacy groups to better understand the opportunities and challenges associated with sharing health data across borders. To this end, we are exploring the topic with a first step being gaining an in-depth understanding of the European policy environment and running a session on the topic to share with Members at our Masterclass on Friday, July 30.

For research, healthcare data holds tremendous potential for transforming our knowledge of health, disease risks and personalising treatments, by collectively assessing information from electronic health records, national healthcare databases and information created and shared by patients (for example, monitoring illnesses and symptoms, health data from apps and smart devices).

Earlier this year, the European Commission presented a draft of regulations for stakeholders across the European Health Data Space (EHDS) Act to promote safe exchange of patients’ data and citizens’ control over their health data. DiCE attended the Health Data Innovation Conference on June 21, 2022, organized by the Healthcare Data Innovation Council. This is a partnership of healthcare actors – Clinical, Patients, Researchers, Pharma and Medtech companies – with the mission of progressing regulatory frameworks and advancing privacy preserving technologies for data sharing and possible research use.

We are pleased to share that Petra Wilson from FTI Consulting and Lisa Rice Duek from HIMSS, will moderate a session titled “What can the European Health Data Space (EHDS) do for cancer patients” an introduction on EHDS and relevant E.U. level legislation, followed by a workshop addressing the patient perspective on data donation/altruism at our Annual Master Class in Barcelona, on July 2nd, 9:15-11:15. We hope you can join us!