Join the health data community and be part of the conversation

Data Saves Lives recognises the need and desire to build a ‘health data community’ to share views and concerns on data related issues

It is a forum to discuss respective positioning regarding GDPR and other data related legislation and policies, in a timely fashion.

IPPOSI is a member of the Data Saves Lives forum and an official partner of the initiative.

One of it’s key objectives to agree a set of over-arching principles for the responsible use of health data.

Data Saves Lives is being launched on 12th November during the 2019 European Patients’ Forum (EPF) Congress in Brussels.

Data Saves Lives originated from an informal meeting in 2017 of multi-stakeholder representatives from various organisations with an interest in health data. It represents their vision of a Europe where patients, care givers and citizens are informed about and involved in responsible health data sharing, leading to trust, more effective research, improved healthcare and better outcomes.

The aim of this initiative is to create a health data community, a “safe space” where stakeholders can openly discuss their views and ideas on data and data policy at European and national level. The full potential of the use of health data will be analysed, along with the potential challenges and risks this. At the same time the core of the initiative is the development of an informative web platform that will provide lay-language information for patients and citizens who need neutral, understandable and comprehensive information on the topic of health data.

The objectives of the initiative are to:

  • Raise wider patient and public awareness about the importance of health data
  • Improve understanding of how it is used
  • Establish a trusted environment for multi-stakeholder dialogue about responsible use and good practices across Europe
  • Empower patients and healthcare professionals to realise the potential of new sources of data and digital technologies
  • Create resources adaptable to use at national/local level
  • Show real-life examples on how data is used for the benefit of patients