Frequently Asked Questions
DATA DONATION FAQ
Frequently Asked Questions
Our global medical data donation program is unique, so we’re sure you have questions. Read through our Data Donation FAQ for the answers!
How can I donate my data?
Data donation is easy! Simply log in to our donation dashboard, confirm your identity and sign a couple of consent forms. With just a few clicks, you’re now a Data Hero! If data donation is not yet available in your country, you’ll be prompted to join our waiting list so that you can be one of the first Data Heroes in your country!
Can I revoke consent for the use of my data?
Of course! You can revoke (and even re-give) consent at any time using our donation app. Simply log in and then click the button to revoke your consent! Once revoked, your data will no longer be shared in the future.
What happens to the data that I donate?
When you give consent to donating your data, we request your medical data from your healthcare provider. It then undergoes a strict anonymization process, which removes all of your personally identifiable data (PID) to ensure your privacy. Once that is done, it’s bundled into large anonymous data sets that are made available to researchers using it for medical, scientific and R&D purposes. Under some circumstances you may be separately asked to give consent to disclose your personal data to the researcher, if the specific research project requires access to personal data.
Who can use my data and for what purposes?
One of our missions is to democratize data. Right now only large companies have the budget to buy medical data, leaving start-ups and small researchers unable to carry out their studies. Any entity who is conducting legitimate research is able to access our database of donated data, including universities and research organizations. Please note: we only share your medical data for scientific research. Your medical data will not be used for other purposes, e.g. adjusting insurance premiums.
Is there an identity verification process?
Yes – and it’s very simple! We want to protect patient privacy as much as possible, which is why we ask everyone to undergo an online identity verification process. Simply get started on our donation dashboard, and it will walk you through each step of verifying your identity. The process should take no longer than a few minutes and is the same secure verification method used on government and financial websites. Please note the verification process may vary depending on which country you are in.
Do I remain anonymous when donating my data?
Yes! The first step when we receive your medical data is to remove all your personally identifiable information, which involves much more than just deleting your name and surname. Our anonymization techniques ensure that nobody will be able to deduce who you are on basis of data that we share. This way you can donate anonymously without worrying your medical data can be traced back to you. Under some circumstances you may be separately asked to give consent to disclose your personal data to the researcher, if the specific research project requires access to personal data.
What are your core values as an organisation?
We believe data ownership and privacy are fundamental human rights. We believe in medicine based on data, facts and trials without bias. We believe research should be representative, and based on consent. For our full core values, see our Data Donation Manifesto.
Is my medical data ever put on the blockchain?
Your medical health records are never put on the blockchain. We only store pseudonymized information regarding your consents and information related to the processing of your data, so that you can always check what is happening with your data.