GDPR Code of Conduct for Health Research and Implications for FP9

BBRMI-ERIC has been working tirelessly to understand the future of health research in the changing panorama of data governance and EU funding. As part of this effort, a seminar aimed at triggering a broad debate around the GDPR Code of Conduct for Health Research and its implications for FP9 took place in Brussels on the 6^th November 2017. Focussing on the use of personal data for existing and future health research, the seminar was divided into three sessions, each with its specific key objectives:

•  Session 1, “Big Data and the European Open Science Cloud (EOSC)”, aimed at understanding how EOSC will provide solutions to health researchers. Thanks to Augusto Burgueño Arjona, Head of the Unit “eInfrastructure” at DG CONNECT, the audience received detailed insight on how the Commission will support health researchers by promoting pan-European cloud computing solutions.
• Session 2, “The GDPR Code of Conduct on Health Research”, was about the GDPR Code of Conduct for Health Research, an initiative led by BBMRI-ERIC. Aiming to fill the gaps in the GDPR, which is due to be implemented in May 2018, it remains the best attempt so far at defending the needs of health researchers in the field of data protection. The lively debate demonstrated that both the research and the policy community is highly interested in this initiative.
• Session 3, “The Health Research Outlook on the 9th Framework Programme”, initiated a discussion on the future European Commission funding programme. Horizon 2020 was a great success, yet several aspects can be fine-tuned to make FP9 a better-suited programme to support the next research breakthrough in medicine:

Oversubscription and high cost of participation: the success rate for FP9 must be higher to justify the time/resources used to produce unsuccessful proposals;

More coordination with national funding: EU and national funders must come together to agree on research priorities, thus maximising the impact of their funding;

Open access: FP9 and its sister programmes like IMI2 shall embrace the concept of FAIR data sharing (data generated by EU-funded projects should be Findable, Accessible, Interoperable and Reusable) and better promote open access to publications generated by EU projects to maximise the input of publicly funded research.

The seminar generated considerable interest among the health research community, bringing together 70 attendees including EU policy-makers, legal experts and practitioners, industry, patient representatives, research organisations and medical societies.