The Health Data Paradox
The Human Genome Project began in 1990 and was completely dependent on sharing health data. Labs participating were required to publish their results for free on a website within 24 hours of any important discovery. By 2005 the project had mapped the entire sequence of human DNA.
The same open data sharing principles were used in January 2020 when the novel coronavirus was identified and then sequenced within days. The genome sequence of novel coronavirus was then immediately released to the public and led to the development of vaccines.
Sharing health data is critical to medical research and policymaking. Data about your health might be the key to the next medical breakthrough that saves lives. You might be able to help cure cancer, heart disease, and diabetes just by sharing data that is already being collected through your medical records or on your fitbit. Data about you and your community might also vastly improve public policies in response to the next pandemic; saving lives and reducing economic harm.
But here’s the tragic paradox of the data collection economy: Companies and governments have used techniques that spy and trick people into surrendering their personal data, so people have lost the trust required to share their health data; even when it might save lives (including their own or their loved ones).
I don’t share my health records. Do you? And I won’t if I don’t trust the way my data is collected.
Does this seem fixable? We think it is.
As they say, trust is hard to earn and easy to lose. So, let’s start by building data and privacy tools that can be trusted.