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Open and trusted health data systems can help Europe respond to the many urgent challenges facing its society and economy today. The global pandemic has already altered many of our societal and economic systems, and data has played a key role in enabling cross-border and cross-sector collaboration in public health responses.

Even before the pandemic, there was an urgent need to optimise healthcare systems and manage limited resources more effectively, to meet the needs of growing, and often ageing, populations. Now, there is a heightened need to develop early-diagnostic and health-surveillance systems, and more willingness to adopt digital healthcare solutions.

What is secondary use of health data?

Health data is a term used to describe all the information generated through the process of delivering healthcare to populations, including disease registries, public health surveys, clinical trial data, insurance claims and electronic health records.

Primary use of health data is when health data is used to deliver healthcare and to make decisions about the care of the individual from whom it was collected.

Secondary use of health data is the use of aggregated health data from population-level sources – such as electronic health records, health insurance claims data and health registry data – to improve personal care planning, medicines development, safety monitoring, research, and policymaking.

The importance of secondary use of health data

By reusing health data in different ways, we can increase the value of this data and help to enable these improvements. Clinical data, such as incidences of healthcare and clinical trials data, can be combined with data collected from other sources, such as sickness and insurance claims records, and from devices and wearable technologies. This data can then be anonymised and aggregated to generate new insights and optimise population health, improve patients' health and experiences, create more efficient healthcare systems, and foster innovation.

This secondary use of health data can enable a wide range of benefits across the entire healthcare system. These include opportunities to optimise service, reduce health inequalities by better allocating resources, and enhance personalised healthcare –for example, by comparing treatments for people with similar characteristics. It can also help encourage innovation by extending research data to assess whether new therapies would work for a broader population.

Acknowledgements

This report was researched and produced by the Open Data Institute (ODI) and published in September 2021. The lead author is Mark Boyd. The wider project team includes Mahad Alassow, Dr Mahlet ‘Milly’ Zimeta, and Dr Jeni Tennison. This report is independent work by the ODI that was commissioned by Roche.

What is secondary use of health data?

The importance of secondary use of health data

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