White Paper: Better Utilisation of Data Infrastructures to Support Seconday 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 two 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. These are all important issues for shaping the future success of the proposed European Health Data Space.