What is Data Saves Lives?

Data Saves Lives is a multi-stakeholder initiative with the aim of raising wider patient and public awareness about the importance of health data, improving understanding of how it is used and establishing a trusted environment for multi-stakeholder dialogue about responsible use and good practices across Europe.

Led by the European Patients’ Forum (EPF) and the European Institute for Innovation through Health Data (i~HD) Data Saves Lives has launched this web portal, sharing relevant information and best practice examples about the use of health data and generating easy-to-use materials about the basic concept related to data sharing, the data journey and the safeguards in place.  

All content is reviewed by an independent editorial board and user group, to ensure accuracy, neutrality, usability and accessibility.

Our materials are developed in English and our aim is that these can be easily translated and adapted for local contexts across Europe. 

Data Saves Lives has a crucial role in exploring societal questions about the uses of health data and supporting stakeholder dialogue, with a view to enhancing trust and cooperation. 

We aim to stimulate a structured and meaningful discourse within the health data community about responsible use of data and to capture, share and discuss views on other data related issues. 

Our vision is “A Europe where trustworthy data sharing supports health and scientific research to meet the needs of patients and address the challenges faced by our healthcare systems”

Our mission is to create a European Health Data Portal that will build awareness and understanding on:

1. why data is important

2. how it is used

3. provide a trusted environment for dialogue about the use of health data in Europe

The initiative is being led by a multi-stakeholder core group. EPF chairs this group and hosts the secretariat. i~HD leads on content development. 

An advisory board is currently being established, comprising a wide range of health data community stakeholders. They will help to guide us on the different perspectives we need to convey when explaining the uses of health data. 

Start-up funding for the initiative has been provided by the European Federation of Pharmaceutical Industries and Associations (EFPIA) and EIT Health as an unrestricted educational grant. The funders have no control over the content.

This Data Saves Lives European initiative contributes to, and connects with, a global #DataSavesLives movement and the corresponding Twitter handle. 

For more information, please contact Gözde Susuzlu, Data Saves Lives Coordinator at gozde.susuzlu@eu-patient.eu.