This digital campaign is launched to stress and to show how important health data is to European research, to provide background information and regular updates to researchers and patients, and to facilitate a dialogue between them on this key issue. You can engage with our campaign through the datasaveslives.eu website or via the @datamattersEU Twitter handle. The European Data in Health Research Alliance includes FEAM, Cancer Research UK, the British Heart Foundation, the European Patients Forum, the European Public Health Alliance, Science Europe’s Medical Science Committee and the Wellcome Trust.
The launch of our campaign comes as the European Council of Ministers announces its support for a regulation that strikes a better balance in recognizing both the importance of the use of health data in research and adequate safeguards to protect citizens’ privacy when their data is used for research purposes. This is an encouraging announcement for European research and citizens in light of recent modifications that were proposed by the European Parliament and that could have seriously limited the use of data in health research.