The Solution
How Data Donor works
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.
Key data will include:
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Vaccination status
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Current health status
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Some information from medical records
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Citizen consent (on an individual basis)
The Solution
Digi.me is the world-leader in providing citizen-centric data. They have been approved for medical data processing and handling by the UK, Netherlands and Iceland’s health authorities.
Digi.me meets all stringent data protection provisions, security and safety requirements. See digi.me's accreditations
In this system diagram, digi.me already includes Self-Assessments capability, wearables and medical records integration and the full consent API/SDKs. To create a data donor program, further elements are required:
Citizen Process
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.
Illustration of the user flow in the digi.me app
Data donor website
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 Data and Medical Records
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.
Secure Anonymised Data Repository
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.
Powered by digi.me, the leader in privacy sensitive data sharing and authorised to handle medical data in the US, UK, Iceland and Netherlands.
