Data to citizens: the variants of trust for health data sharing

“Data to citizens: the variants of trust for health data sharing” was the name given for the closing keynote speech of the 31st Medical Informatics Europe Conference (MIE2021) on 31 May.

Carina Dantas, Senior Project Manager at the ECHAlliance discussed with a lively audience the challenges and enablers to enhance citizen participation and ownership of the digital revolution, essential for further developments in the data sharing landscape, in a session hosted by the former EFMI President, Lăcrămioara Stoicu-Tivadar.

Between the highlights of the session, it was referred that encouraging citizens to share their data may not require a huge effort, but one essential factor seems to be getting results returned to them, as this is seen as highly motivating, based on the results gathered by the ECHAlliance within the DigitalHealthEurope project.

The challenges that get in the way of citizen involvement in health data sharing are still broad and many, and require a holistic approach to data sharing governance but also to the organisation of health and care systems. Initiatives such as the European Health Data Space, the Digital Health Society, the Stakeholders Network on SHAFE and NET4Age-Friendly are paving the way to this multidisciplinary vision that will pave the way for the next few years.

The European Federation for Medical Informatics Association (EFMI) is the leading organisation in medical informatics in Europe, founded in 1976, and representing 30 countries through their respective national health informatics associations. EFMI is organised as a not-for-profit organisation concerned with the theory and practice of Information Science and Technology within Healthcare and Health Sciences in a European context.