The Health Data Focus Group aims to be the incubator of ideas relating to health data and is ELIXIR’s formal channel to organise this.
Health data includes
- clinical (structured and unstructured EHRs, and clinical imaging)
- lifestyle/patient questionnaire
- real-world wearables/mobile devices data.
All data will be anonymised/pseudonymised and consented for research. The collection of identifiable routine clinical data in healthcare systems are out of scope.
Goals of the group
- Utilise anonymised/pseudonymised and consented health data for secondary research
- Implement research results into healthcare settings
- Evaluate the current situation across ELIXIR Nodes, identify the commonalities and gaps are in interactions across Nodes, platforms, and studies.
- Provide best practices or recommendations on the management of FAIR Health Data, with infectious disease, particularly COVID-19 as a use case, in order to enable the access to and use of health data across Nodes after surveying existing initiatives inside & potentially outside ELIXIR.