European campaign on the EU Data Protection Regulation

European Data in Health Research Alliance highlights the value of patient data to European health research.

The European Data in Health Research Alliance has launched a digital campaign to inform the ongoing debate regarding the EU Data Protection Regulation. The campaign provides a platform for researchers and patients to share their views on the value of using data in research.

The launch coincides with an announcement from the European Council of Minsters regarding their proposals to amend the draft EU Data Protection Regulation. Their proposed changes are an important step towards protecting research from the potentially devastating consequences of amendments proposed by the European Parliament. The Council's amendments outline a more balanced approach, which recognises the importance of making data available for research, as well as the vital role of safeguards in protecting people’s privacy when data are used in research.

The European Data in Health Research Alliance is supported by the European network of medical Academies, the Federation of European Academies of Medicine (FEAM), of which the Academy is a member. The Alliance is also supported by Cancer Research UK, the European Patients Forum, Medical Sciences Committee of Science Europe, the British Heart Foundation, the European Public Health Alliance and the Wellcome Trust.

Researchers and patients can engage with the campaign through the datasaveslives.eu website or via the @datamattersEU Twitter handle. The campaign relates to ongoing work by the Academy and other European stakeholders to inform the ongoing debate around the Regulation.  

Regarding the Council of Ministers' announcement and the launch of the campaign, FEAM's President, Professor Dermot Kelleher FMedSci, said "This is an encouraging first step in the right direction for supporting a dynamic European health research and the welfare of EU citizens. The European Data in Health Alliance is a great platform for further public engagement on this key issue and I am pleased of FEAM’s involvement in this timely Alliance".

 

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