The ambitious effort to piece together America’s fragmented health data

Nicole Wetsman at The Verge: “From the early days of the COVID-19 pandemic, epidemiologist Melissa Haendel knew that the United States was going to have a data problem. There didn’t seem to be a national strategy to control the virus, and cases were springing up in sporadic hotspots around the country. With such a patchwork response, nationwide information about the people who got sick would probably be hard to come by.

Other researchers around the country were pinpointing similar problems. In Seattle, Adam Wilcox, the chief analytics officer at UW Medicine, was reaching out to colleagues. The city was the first US COVID-19 hotspot. “We had 10 times the data, in terms of just raw testing, than other areas,” he says. He wanted to share that data with other hospitals, so they would have that information on hand before COVID-19 cases started to climb in their area. Everyone wanted to get as much data as possible in the hands of as many people as possible, so they could start to understand the virus.

Haendel was in a good position to help make that happen. She’s the chair of the National Center for Data to Health (CD2H), a National Institutes of Health program that works to improve collaboration and data sharing within the medical research community. So one week in March, just after she’d started working from home and pulled her 10th grader out of school, she started trying to figure out how to use existing data-sharing projects to help fight this new disease.

The solution Haendel and CD2H landed on sounds simple: a centralized, anonymous database of health records from people who tested positive for COVID-19. Researchers could use the data to figure out why some people get very sick and others don’t, how conditions like cancer and asthma interact with the disease, and which treatments end up being effective.

But in the United States, building that type of resource isn’t easy. “The US healthcare system is very fragmented,” Haendel says. “And because we have no centralized healthcare, that makes it also the case that we have no centralized healthcare data.” Hospitals, citing privacy concerns, don’t like to give out their patients’ health data. Even if hospitals agree to share, they all use different ways of storing information. At one institution, the classification “female” could go into a record as one, and “male” could go in as two — and at the next, they’d be reversed….(More)”.