Frontier Economics was commissioned by Roche to conduct a study on the impact of cross-border sharing of patient data between the European Union and non-EU locations, taking place in the healthcare sector.
In our newly-published report, 'The value of international health data flows for the EU', we carried out a review of existing evidence, 12 interviews with sector stakeholders, and a survey of 200 private sector organisations to understand their approach to data sharing and the outcomes generated by data sharing. We also modelled the impact of the data sharing on health research, patient outcomes, and the productivity of the health sector.
We find that patient data sharing undertaken by healthcare businesses generates around €10.7bn of value to the EU, as a result of:
- EU businesses that share patient data carrying out 14% more clinical trials, which could lead to new treatments that would improve patient health, potentially amounting to 64,000 additional Quality-Adjusted Life Years for cancer patients alone;
- Cost savings in conducting clinical trials;
- Additional health research (beyond clinical trials) with associated societal benefits;
- Greater patient access to personalised medicine;
- Greater productivity of healthcare businesses as a result of more efficient business operations and better coordination across the healthcare supply chain.
Our survey also uncovered the barriers to data sharing, which include:
- Lack of interoperability between different data sources and lack of data standards;
- Complex and at times conflicting regulations (including variation between countries and
- organisations on the interpretation of GDPR requirements);
- Lack of clarity over GDPR requirements: chiefly, around what degree of anonymisation is sufficient; and
- uncertainty around the requirements for data sharing between the EU and the United States.
If the current barriers to data sharing were removed, we estimate that the benefits of patient data sharing between EU and non-EU locations may increase by around €5.4 billion per year across the EU27. 50% of the companies we surveyed that currently do not share patient data between EU and non-EU locations, indicated that they would start sharing data if the main barriers they are faced with were removed.
Our study suggests that removing these barriers and clarifying the GDPR regulations (e.g. anonymity of data) and increased alignment between countries in terms of the interpretation of the regulations could help to achieve these significant benefits.