Capturing data for research is fraught with challenges no matter where you are in the world. Consent, timeliness and citizen identity all add to the complexity. This is where the data donor programme and the digi.me data wallet can help.
We can provide accelerated access to data including medical records in multiple jurisdictions, self-assessments, and other key real-world data with consent and without infringing on the privacy of citizens.
Current health status
Some information from medical records
Citizen consent (on an individual basis)
The data donor programme will be promoted through various channels including social media, via vaccinators and vaccination programmes. Information and resources will shortly be provided to support citizens, vaccination centres, with promoting the service.
At present citizens can register their interest with the data donor programme via this website until the data collection process formally commences at which point they will be notified.
Citizens who elect to become a data donor, will use the digi.me app to connect to / collect the data and consent to share their data.
On consenting the individual establishes a relationship with the repository and data will be collected daily until the programme comes to an end or the citizen decides to opt out. Citizens will also have the right to erasure to ensure full compliance with data protection laws including GDPR.
Vaccination and other medical record information is already available via the digi.me app in various countries including Iceland, Netherlands MedMij, England NHS and US hospitals with support for NL7 FHIR, Blue button and CDA. Others can be added where those countries/systems expose an API.
Scanning and manual data entry are also options which can be used to ensure the data donor programme is accessible as broadly as possible.
DTACT, one of digi.me’s technical partners provide the secure SAAS repository which is hosted in Amazon but can be deployed in to Azure or specific national infrastructure.
While the data is anonymous, where the citizen consents, citizens can be contacted for the purposes of feedback, re-consenting and requesting new data.
The identity of individuals is only disclosed when absolutely necessary and with their full and informed consent.