The national Observatories are independent, not-for-profit, legal entities created for data collection, analysis and evidence sharing to inform clinical practice and healthcare decisions. These ethically and legally sound national, or regional, H2Os are initially being created in four countries -Netherlands, Austria, Germany and Spain- covering three diseases -cancer, diabetes and IBD (Inflammatory Bowel Disease)-. They operate under a governance model that guarantees data protection under national and European jurisdictions. These independent entities (observatories) guard data on behalf of patients, who keep control of their own data being used for individual and collective care, research or the evaluation of new technologies.
These H2Os connect to a pan-European Observatory to facilitate interoperability, guide reproducibility in other countries, and promote the benefit of measuring and using patient-centred outcomes at regional, national, European and global levels.