The use of health data has the potential to offer significant benefits for patients and healthcare systems, as well as research and innovation. However, a sustainable and effective health data ecosystem is needed in order to realise the full potential of these data.

This is one of the main conclusions of a recent report from RAND Europe, entitled: “Understanding value in health data ecosystems.” The report provides evidence on some of the current and future benefits of health data for science and innovation, public health and healthcare systems, as well as the challenges to creating a favourable environment.

Today, an increasing volume of information and data is being generated with the digitalisation of healthcare systems and services, and the increasing use of new devices and technologies. The advancement of data science and analytics offers the potential to profoundly change our healthcare systems, the innovation and research capabilities as well as patients’ lives across the world. Better use of data may be one of the key components to ensuring health system sustainability

Against this backdrop, the report highlights the significant value that health data could bring to patients by improving the prediction of risks factors, preventing the progression of diseases, enabling more personalised treatments and targeted interventions for patients. The use of health data could improve the research and innovation process, leading to evidence-based decision-making that can contribute positively to the performance and sustainability of healthcare systems.

However, in order to unlock the full value of health data, a receptive ecosystem needs to be established, building on five key pillars:

1. Collaboration and coordination with various stakeholders and sectors to manage their interdependencies and align their interests;
2. A strengthening of existing initiatives to address data quality, standardisation, interoperability and data protection – notably public private partnerships;
3. The alignment of national and EU efforts to maximise the positive impact of recent legislation, including the General Data Protection Regulation;
4. Building of workforce capacity; and
5. Improved public awareness, acceptability and engagement with health data

The General Data Protection Regulation, which will come into force in 2018, is seeking to address data privacy concerns. However, it remains to be seen how it will be implemented by Member States, whether the regulation’s flexibility will lead to fragmentation in the use and exchange of health data in Europe and whether it will facilitate the responsible use of this data.

Robust and harmonised European rules on the processing and use of patient data are essential to unlock the full value of health data at scale and at pace, to help ensure that innovations are made available to patients and healthcare systems. Developing an understanding of how Member States will respond to the provisions of the General Data Protection Regulation and develop the capabilities, capacities and processes to implement it, will be of particular importance for future progress.