White Paper: Better Utilisation of Data Infrastructures to Support Secondary Uses of Health Data

There is a rapidly growing interest in making greater use of routinely collected health data – what is known as real-world data. This interest is emphasised in Priority 2 of the European Commission’s Communication on the Digital Transformation of Health Care in the Digital Single Market, COM(2018)233. Priority 2 relates to “Better Data to Promote Research, Disease Prevention and Personalised Health and Care”. Investments in this field are being made across the whole of Europe. 

The use of real-world data by health professionals, public authorities, and industry is an area of keen pursuit. The end-results are to ensure that healthcare products, innovative technologies, and therapies meet patients’ needs and lead to favourable health outcomes. Outcomes include improvement of understanding of health and disease; better anticipation of disease outbreaks; faster diagnosis; and development of more effective preventive measures and treatments.

A White Paper was needed that could outline the chief options in relation to data infrastructures and enhanced secondary uses of health data. Two years on from the first outline of a commitment to better data use, DigitalHealthEurope put together such a report.

This DigitalHealthEurope report is the first of three documents that explore the evolving European and national landscapes of health data-sharing for care and for research. This first report consolidates knowledge in the data-sharing field and lessons learned; collects core insights from key stakeholders; and explores the success factors for the acceptance and good use of health research data infrastructures.

Second report: European Health Data Space Industry Report

Third report: DHE Consultation with citizens/patients on the European Health Data Space

These are all important issues for shaping the future success of the proposed European Health Data Space.