My health data and me: 4 webinars to understand everything
Institut Curie's SIRIC invited you to a series of webinars on health data throughout the month of October 2021.
These meetings, which are independent but form a whole, aimed to give you the keys to understanding the complexity of the questions and issues surrounding the use of health data.
The aim is to enable you to better understand what is at stake around health data and to make informed decisions for you and your loved ones.
1. WHAT ARE WE TALKING ABOUT?
The 1st meeting showed the wide variety of health data and their specificities, especially when they are constitutive, such as genomic data.
We discussed the process of digitization and the bringing together of data to go from individual data to Big Data. We insisted on the importance of technical issues such as quality, storage, circulation and interoperability or anonymisation as well as the question of costs and their impact on decisions.
► Alain Livartowski, oncologist and member of the Data Department at Institut Curie
2. WHAT IS MY DATA FOR ?
This 2nd meeting illustrated the uses developed from health data. We focused on care and then on research and beyond. We saw how the aggregation of data creates new objects of study. These scale changes will project us towards national platforms but also European and international platforms.
We addressed the issue of big data, the playground of artificial intelligence, taking care not to have a simplistic vision of data that solves everything.
►Catherine Bourgain, geneticist and sociologist, Inserm research director, director of Cermes3
3. WHAT PROTECTION FOR ME AND MY DATA ?
The 3rd meeting led us to question ethics and law. We first tried to understand the ethical choices underlying the legislative measures, then we approached these measures from the point of view of care and then research, as the rules are different depending on the context.
We looked at the key issues of consent and the right to be forgotten. Finally, we discussed the major infrastructures and the European scheme as well as the supervisory bodies.
► Emmanuelle Rial-Sebbag, jurist, Inserm research director, associate professor in health law and bioethics, Toulouse Faculty of Medicine
4. WHAT VALUE DO MY DATA HAVE?
The last meeting, rooted in the previous ones, dealt with the value of data for individuals but also for society at large with the notion of common good.
We looked at the issues at stake for research and care, but also more broadly at the economic issues and national sovereignty. Finally we asked ourselves the question of the levers of action to act as an individual or within an association.
► Pierre Lombrail, university professor, hospital practitioner, Sorbonne Paris Nord University
Organizing Committee for this series of seminars: Xosé Fernandez; Catherine Bourgain; Dominique Stoppa-Lyonnet; Astrid Lang; Elisabeth Hess; Amber Anirah