It took a pandemic, but the US finally has (some) central medical data

N3C, on the other hand, is scrutinized by thousands of researchers and accountable to them at hundreds of participating institutions, with a strong focus on transparency and redundancy. Everything that users do within the interface they use GovCloud Palantir The platform, it is carefully maintained, so that anyone with access can follow their steps.

“This isn’t rocket science, and it’s not really new. It’s just hard work. It’s tedious, it has to be done carefully, and we have to validate every step,” says Christopher Schott, a Johns Hopkins professor of medicine who also co-led N3C. Something we can do is systematically turn the data into incorrect data that will give us wrong answers.”

brute force

Haendel points out that these efforts have not been easy. “The diversity of expertise it takes to make this happen, perseverance, dedication, and, frankly, brute force, is unprecedented,” she says.

This brute force has come from many different fields, many of which are not traditionally part of medical research.

“During the time of coronavirus, people were more willing to collaborate,” says Mary Poland, a professor of informatics at the University of Pennsylvania. “You can have engineers, you can have computer scientists, physicists. , all those people who might not normally participate in public health research.”

Poland is part of a group that uses N3C data to research whether COVID increases irregular bleeding in women with PCOS. Outside of covid, most researchers have to use insurance claims data to get a large enough database for population level analyses, she says.

Claims data can answer some questions about how well drugs work in the real world, for example. But these databases are missing huge amounts of information, including lab results, symptoms people report, and even whether patients are dying.

collection and cleaning

Outside of insurance claims databases, most health data collaborations in the United States use a federated model. All participants in these studies agree to coordinate their data sets in a common format, and then make inquiries from the cohort, such as the proportion of severe HIV infections by age group. Several international Covid research groups, including Health Regulatory Data Science and Informatics (OHDSI, pronounced “Odyssey”), works this way, avoiding legal and political problems with cross-border patient data.

OHDSI, founded in 2014, has researchers from 30 countries, who together hold records for 600 million patients.

This allows each organization to keep their data behind their own firewalls, while providing their own data protections. “It doesn’t require any data for patients to move back and forth,” Poland says. “That’s convenient for a lot of places, especially with all the hacking that’s been happening lately.”

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