On Tuesday 28 November 2023, the ENVI and LIBE Committees of the European Parliament adopted their report on the European Health Data Space (EHDS). The European Society for Medical Oncology (ESMO) welcomes the adoption of the report as it contributes to creating an impactful EHDS that benefits patients, and it reflects ESMO’s recommendations aimed at accelerating research in the oncology field.
The legislative proposal for the EHDS was put forward in May 2022. It aims to create a data space composed of rules, common standards and practices, infrastructures and a governance framework for both the primary and secondary use of electronic health data across the European Union (EU). As part of this, the EHDS will establish a common EU framework and infrastructure through which researchers as well as public, private and not-for-profit entities can access health data for purposes such as research and innovation, including research conducted in the oncology space.
ESMO welcomes the ENVI & LIBE report as it reflects key recommendations from ESMO aimed at enhancing the impact of the EHDS for oncology research and addressing the needs of patients with cancer, including provisions to:
- Provide healthcare professionals with the digital skills, competences, infrastructures and tools required to fulfil their obligations under the EHDS;
- Help prevent that academic researchers and non-commercial entities are faced with excessive fees when requesting access to data through the EHDS;
- Strengthen collaboration between representatives of healthcare professionals and the new EHDS Board;
- Enable the evaluation of additional EU funding to support the implementation of the EHDS across the EU Member States.
The vote in the European Parliament’s plenary is tentatively planned for December 2023. Once the Council has adopted its position on the EHDS file, trilogue negotiations with the Parliament will start to agree on the final legislative text. Throughout this process, ESMO will continue to engage with EU policy-makers to ensure the creation of an EHDS that supports medical oncologists and the patients they serve.
Further information on ESMO’s advocacy on the EHDS can be accessed here.