How a medical database developed at MIT evolved into a global standard of data-sharing

Before the advancement of scientific data storage and collaboration via the cloud, medical investigators seeking health research breakthroughs had to overcome significant obstacles to collaboration and key clinical data gathering. 

Data were siloed and difficult to distribute, so those looking to undertake research had no option but to gather them themselves. This not only made research more expensive, but it was challenging to compare findings across datasets. 

In 1975, researchers studying arrhythmias at MIT and Boston’s Beth Israel Hospital envisioned another way: the team began collecting and digitizing electrocardiogram recordings with the intention of not only studying them, but of also making them available to the wider research community.

The team built their own computers for the process, painstakingly duplicated tapes one by one, and created more than 100,000 annotations for the recordings. The process took years, but by summer 1980, the tapes were finally ready. The team initially thought their tool would reach fewer than a dozen academic and industry groups. But interest kept pouring in. Over the next decade, they went on to mail about 100 copies. 

The data eventually became the first database of the global platform PhysioNet — founded in 1999 at the Harvard-MIT program in Health Sciences and Technology — as a clinical data repository for complex physiological signals. 

At the time, that type of data-sharing, which may seem like the default today, was a near-revolutionary idea. PhysioNet’s “founding was incredibly visionary,” says Thomas Heldt, Richard J. Cohen (1976) Professor in Medicine and Biomedical Physics, associate director of MIT’s Institute for Medical Engineering and Science, and the senior author of a recent paper in Nature Health examining the platform’s impact.