In autumn 2017, the European Commission launched a public consultation on the transformation of health and care in the Digital Single Market (click here). The consultation investigates the need for policy measures that will promote digital innovation for better health and care in Europe and feed into a new Policy Communication to be adopted by the end of 2017.
BBMRI-ERIC submitted its reply to the consultation. The BBMRI-ERIC National Nodes helped drafting the reply via the BBMRI-ERIC International Organisations and Policy Task Force.
Patients/citizens should be in the driving seat, together with data controllers
BBMRI-ERIC believes that patients/citizens should have access to all their health data in order to promote self-management and awareness. At the same time, hospital/health research organisations should continue to manage health data to avoid misuse or abusive access requests (from employers or insurance companies etc.) and for quality assurance purposes.
Sharing health data to ensure innovation
Sharing health data for research purposes remains a priority for BBMRI-ERIC, provided that sufficient measures are in place to prevent privacy breaches and cybersecurity issues/attacks. If there are no safe and transparent ways to share health data, innovation in healthcare will simply come to a halt.
Encryption of health data and broad, withdrawable consent are the pillars of sharing health data in a safe and transparent way.
Even if all IT-related risks are minimised, data sharing will still be a complex issue due to the lack of internationally agreed standards on interoperability. Health record formats are still too heterogeneous, which has a negative impact on data quality, technical interoperability and the actual usefulness of health data.
For these reasons, the EU should prioritise the development and implementation of interoperability standards as a first step towards further initiatives regarding the harmonisation of eHealth records.
Big Data: action points for the European Commission