Through the creation of patient registries, you can:
How do we do it?
Data access without compromise
Better insights from more comprehensive data sets
We believe that it is possible to ensure data access without compromising privacy. We source our data based on patient’s consent, in line with the Data Governance Act, GDPR and other key EU legislative packages. We work together with more than 30 international stakeholders to ensure highest ethical and technological standards of data access.
The result? Better insights from more comprehensive data sets for researchers, gathered ethically with no compromises.
Inspiring trust in science
We follow highest ethical standards of data access. Working in partnership with the Global Medical Data Donation program, all of the pseudonymised or personal data we source is collected with the informed consent of the patient concerned. With our technological system, patients provide legal consent for us to access their data and they can revoke consent at any time, in line with EU legislation for consent-based secondary data usage.
We are the first entity to build and implement the technological and infrastructural system for pan-European medical data donation, based on the Data Governance Act and European Health Data Space legislation. Transfers of data are vetted through an independent Transparency Council, which includes representatives from patients’ organizations.
Due to recent EU legislation and our unique positioning, we are able to source an unprecedented amount of data with proven provenance from sources that have never been easily accessible to researchers before, such as healthcare facilities and hospitals, diagnostic labs, wearables, health apps and others. Our multi-source data can be incrementally updated, providing you with a longitudinal and complete view of patients across the entire patient pathway.
Our system was created by leading experts in European data and healthcare law such as the GDPR and Data Governance Act, and has passed through stringent third-party legal assessment. Combined with the right technologies, we can provide legal certainty that the anonymized data we provide you with was collected legally, and with informed consent. Alongside our strict data processing protocols, our system sets the industry standard for legal compliance.