For some 18 months, EHTEL has been one of the signatories of an informal European Health Data Space (EHDS) stakeholder coalition. The coalition members have followed the proposal for the data space Regulation: its emergence from the European Commission; the input received from consultations; and the in-depth discussions and negotiations among the three European institutions - the European Council, the European Parliament, and the European Commission. They have been keen to offer their own insights into subject matter that could eventually be modified or emphasised.
Today, the coalition is composed of 35 large health stakeholder organisations representing patients, health professionals, researchers, and industrial actors throughout the healthcare ecosystem at both European Union (EU) and Member State levels. Among the areas of concern for health covered by the coalition are: blood-related diseases, cardiology, cancers including prostrate cancer, eyesight, fertility, hypotension, lung and respiratory conditions, rheumatology, and urology. Until March-April 2024, the coalition's members have continued to express their shared concerns about the latest negotiations on the proposed Regulation on the EHDS.
Its members now look forward with interest to reading the enhanced and published text of the EHDS Regulation, anticipated before June 2024, and its adoption by the new Parliament in autumn 2024. They hope to remain involved in the implementation phases of the EHDS itself.
