OPTIMA coordinator Prof. James N’Dow (WP1 lead, WP9 lead) and Sarah Collen (WP8 member) co-chair the Health Data Sharing Taskforce of the Biomed Alliance. On 14 December, the Alliance released a new statement ahead of the upcoming European Commission legislative proposal on the European Health Data Space (EHDS). The new EHDS can play a key role in facilitating health data sharing for healthcare provision, health research and policy making if certain key aspects are taken into account. The EAU has much relevant experience to offer from leading two international Big Data consortiums funded by the EU Innovative Medicines Initiative (IMI) and experience with EAU Research Foundation experience with patient registries and clinical trials. OPTIMA’s goal is to design, develop and deliver the first interoperable, GDPR-compliant real-world oncology data and evidence generation platform in Europe, to potentially advance treatment for patients with solid tumours in the three cancers.
The BioMed Alliance Task Force on Health Data Sharing, in close cooperation with the European Association of Urology (EAU) and the European Organisation for Research and Treatment of Cancer (EORTC) have therefore proposed a set of recommendations for the governance, implementation and incentivisation of adoption of the EHDS.
The statement particularly highlights the need to involve a broad range of stakeholders and to align different legislative approaches with a clear and enabling EU legal framework which will give legal clarity to researchers.
Read the full statement here.