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Are you looking for easy-to-read, yet high-quality, information that explains to your members, staff, and other audiences how health data can be used and how it can ensure people's safety and well-being?

Data Saves Lives could be just the initiative for you. Shortly about to celebrate its five years of existence, the initiative has much to offer

What is Data Saves Lives?

Data Saves Lives is a multi-stakeholder initiative. Its aim is to raise wide patient and public awareness about the importance of health data, improve understanding of how data is used, and establish a trusted environment for multi-stakeholder dialogue about responsible use and good practices across Europe. The initiative is led by the European Patients' Forum (EPF) and the European Institute for Innovation through Health Data (i~HD). 

A vision and mission

The initiative's vision is of "A Europe where trustworthy data sharing supports health and scientific research to meet the needs of patients and address the challenges faced by [..] healthcare systems."

Data Saves Lives' created a web portal that would build awareness and understanding of three important missions that show:

  • Why data is important.
  • How data is used.
  • How a trusted environment can assist dialogue about the use of health data in Europe.


With the imminent announcement of the launch of the European Health Data Space, 2024 is perfect timing to take a look at Data Saves Lives web portal and materials.


A web portal, videos, and materials

Data Saves Livesweb portal shares with its readers information about examples of good practice about the use of health data. It offers people easy-to-use materials about data sharing, data journeys, and what safeguards are in place to keep data safe. All Data Saves Lives' materials are available in the English language. The initiative's aim is that the materials can be easily translated into other languages, and can be adapted to local contexts throughout Europe. The initiative already has successful experiences with translating the toolkit. The initiative's materials are reviewed by a high-level editorial group.

A toolkit and resources

Over its five years of existence, Data Saves Lives has created two versions of a toolkit. Its latest version is 2.0. A core element of the toolkit focuses on artificial intelligence ("From science fiction to science fact"). The toolkit is aimed at equipping patient groups and health influencers with the materials needed to hold a positive dialogue on health data with their own communities. It also enables them to launch their own health data initiatives e.g., by setting up a community-led patient registry. The toolkit draws attention on how to do this, while paying due care and attention to both the General Data Protection Regulation and the European Health Data Space. Materials are available in both the English and Dutch languages

A look at big data 

One of Data Saves Lives core topics relates to big data. The term, big data, originated from the discipline of computer science. It was initially used to describe large, rapidly growing and complex databases with a high volume of data. In a healthcare setting, big data is used to describe extensive healthcare databases or networks of interconnected healthcare databases that come from multiple healthcare organisations. Examples include electronic health record systems and ‘linked’ databases. Being able to process big data can really help improve the quality of health research in Europe, and beyond. 

The topic of big data was a core item on which Data Saves Lives was able to train members of the EHDEN Network in its Ambassador Training Bootcamp at the end of 2023. 

What's in Data Saves Lives for members of EHTEL?

Given the importance of capacity-building and awareness-raising in the context of the upcoming European Health Data Space (see its article 59 (a) and (b)), Data Saves Lives as an initiative - together with its plentiful materials - can really help you to:

  • Support patients, in particular, to understand the importance of health data.
  • Locate materials that can assist patients on all sorts of health data-related topics. 


For other info on Data Saves Lives 

See various blog items on the Data Saves Lives page. 

One example is: Bringing health data back to people


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