The Innovative Medicines Initiative Big Data for Better Outcomes (BD4BO) programme has released recommendations for the European Health Data Space. Its top recommendation, on building trust with EU citizens on data sharing initiatives, involves demonstrating results on issues which are meaningful to people’s everyday health and life and using research questions that are of value to patients, clinicians, and commercial and academic researchers. It also recommends that patients be part of the governance mechanisms of each project and involved in the development of Patient Reported Outcome Measures. Transparency, in terms of public disclosure of research results, is also seen as an important part of trustworthy data use, as this ultimately demonstrates how data are being used to meet the needs of patients. The need for transparency must be balanced with the measures to protect data subjects’ rights under the General Data Protection Regulation (GDPR).
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