Episode 21: Ethical Sourcing of Medical Data

Dinidh O’Brien
Head of Public & International Relations
The Donate Your Data Foundation & Data Lake

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Progress in healthcare and medical research requires a lot of data. In the era of Big Data health data is among the most valuable and the most private information anyone can have. Two major hurdles with finding quality medical data are access to that data in a private and ethical way as well as bias on the data due to underrepresentation of women, certain racial or ethnic groups.
In this episode I talk to Dinidh O’Brien about how donateyourdata.org and DataLake are trying to solve this problem with a patient-first approach to sourcing medical data for research. Data Lake is an EU-funded start-up creating a global medical data donation system based on blockchain technology, with privacy and informed consent as fundamental pillars.

We discuss this data donation framework and how it addresses the issues of privacy, consent, data monetization and working to minimize biases. Dinidh explains how they approach patients to opt in, how they vet organizations that request access to this data and how they plan to expand throughout Europe and the US.