Compliance
Here’s why Data Protection Officers love working with us:
We know how to communicate with patients
We work with over a dozen of patients organizations and with the Donate Your Data Foundation, that help us in developing transparent, honest, and simple communications to data subjects,
Legal framework and forms
We design and evaluate data processing activities, applying inter alia “privacy by design” and “privacy by default” principles. We prepare consent forms and relevant legal communication materials to stay compliant with GDPR, DGA and other applicable regulations.
We collaborate with the Ethical Data Coalition
We ensure that data is used for public good in line with established governance. We do this in collaboration with the Ethical Data Coalition to ensure the highest ethical standards of your operations.
Data Donation Campaigns
We help you launch a consent collection campaign for a targeted population
Campaign design and management
We design all the patient materials and processes for your data donation campaigns targeted to your audience to significantly increase conversion rates.
Stakeholder Engagement
We can involve external stakeholders (KOLs, PAGs) in your data access procedures to ensure the highest ethical and communication standards of the data access process.
Personnel training
We train your personnel from communication and legal aspects to turn them into Data Donation Ambassadors.
Tech
Battle-tested integration, data structuring and anonymization tools
Data Transfer
We’ve designed a process that’s simple, familiar to the hospital IT team and effective. Our solution allows us to build a data pipeline with any hospital within days.
Data Anonymization
State-of-the-art, robust and secure data anonymization in line with the most stringent requirements.
Deeper, more comprehensive data
Now possible thanks to our technology and key EU Legislation
The Data Governance Act and other key EU legislative packages provide the legal framework for the consent-based used of medical data for research and development. We use Distributed Ledger Technology to provide legally-provable instances of consent, gathered through our global medical data donation program. The result? Better insights from more comprehensive data sets for researchers, gathered ethically and based on user consent.
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.