EU: Understanding value in health data ecosystems

The report, ‘Understanding value in health data ecosystems’ examines the benefits of health data for science, innovation, public health and healthcare systems, and the challenges in creating a favourable environment for its use.

Health data could bring significant benefits by improving the prediction of risk factors, preventing the progression of diseases, enabling more personalised treatments and targeted interventions for patients. It could also improve the research and innovation process and support evidence-based decision making that can improve 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;
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;
5. Improved public awareness, acceptability and engagement with health data

The General Data Protection Regulation, which comes into force in 2018, is intended to address data privacy concerns. However, it remains to be seen how it will be implemented by member states, whether the flexibility built into the legislation 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.

The RAND report, which was commissioned by the European Federation of Pharmaceutical Industries and Associations, says 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.

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.

“The literature on health data generation and use identifies a myriad of potential social and economic benefits, spanning three broad categories: (i) benefits for various stages of the R&D process, (ii) benefits for pharmacovigilance and public health and (iii) benefits for healthcare delivery and the health ecosystem more widely. Creating sustainable and effective health data ecosystems will require: (i) considering the value propositions presented by health data in the context of interdependencies and interactions between stakeholders and sectors, (ii) building on existing efforts and momentum to address data quality and technical considerations, (iii) making the most of recent data protection advancements and considering models of data sharing, (iv) considering workforce capacity-building by supporting professionals in making the most out of health data and (v) learning from previous efforts to increase public awareness, acceptability and engagement with health data.”

Read the full report