Providence and about a dozen other major health-care systems across the country said Thursday they will join in a venture “unprecedented” in scope to share anonymized patient data in hopes of supporting research and better understanding medical conditions and treatments.
The health-care systems will co-own a private Seattle-based startup company called Truveta that will aggregate the data and make it available to researchers, health-care providers and pharmaceutical companies, CEO Terry Myerson said.
Myerson is the former head of Windows at Microsoft.
Although health-care providers have shared data before, sometimes for specific conditions like COVID-19, “this is unprecedented in terms of its scale,” Myerson said. Together, the 14 systems have facilities in 40 states and are in communities with more than 100 million people, according to Truveta.
Providence includes Swedish Health Services in Seattle. Also among the health-care systems is CommonSpirit Health, the parent company of Virginia Mason and CHI Franciscan, which recently merged.
Together, those two systems represent nearly 40% of patients in the Puget Sound region, according to Truveta.
More data sharing during the coronavirus pandemic could have provided faster information about how patients were responding to certain treatments or how many patients were experiencing symptoms like the loss of taste and smell, Myerson said.
The health-care systems are financing the company, with each owning an equal share, Myerson said. He declined to say how much funding the company has received.
Eventually, the company will sell access to the data. Pharmaceutical companies designing clinical trials or looking for information about side effects of medications would pay to access the data, Myerson said. For others, like student researchers, “we would want to find a way to make that happen,” he said.
The company has hired 53 employees, Myerson said, and posted about 30 open positions aiming to finish its data platform this year.
The tool could help doctors, who are today “drowning in information,” get focused data about patients with similar conditions as those they’re treating, said Amy Compton-Phillips, executive vice president and chief clinical officer at Providence, which has facilities in Washington, Oregon, Alaska, California, Montana and Texas.
Typical peer-reviewed scientific studies can take years to finish, publish and then turn into common medical practice, Compton-Phillips said. Truveta will not replace that research, but “we could much more rapidly learn and we could use that data to save lives,” Compton-Phillips said.
The idea behind the company predates the pandemic. Providence began considering the concept in 2018 but needed more data, technical expertise and funding, according to Truveta.
Truveta says data shared with the company will be “fully de-identified.” Hospital systems will each determine how to inform their patients, the company said.
Regardless, privacy concerns will loom large.
Researchers and health-care systems have worked in data-sharing agreements before, including during the coronavirus pandemic, said Adam Wilcox, chief analytics officer at UW Medicine and a professor in the University of Washington Department of Biomedical Informatics and Medical Education. Health-care systems face a high risk if something goes wrong because they are responsible for patient privacy and patient trust, Wilcox said.
Truveta’s board will have an ethics committee led by the health-care systems, Myerson said.
“I cannot break the trust with my patients that their information will be used for any nefarious purposes,” said Compton-Phillips, from Providence. “This is absolutely not Cambridge Analytica.”
In addition to legal and business concerns about sharing data, health-care providers may be inconsistent in how they collect information and how complete their data is, Wilcox said.
“It’s messy. That doesn’t mean it’s not possible,” Wilcox said.
Providers may fill out different forms or collect information inconsistently. For example, Wilcox said, one hospital may collect data about patients experiencing homelessness in a format that can be exported in a data set, another may collect information in the notes of a patient’s chart, making it difficult to compile, and a third may not collect that information at all.
Shared information can be critical, though, he said.
When the pandemic hit, Wilcox and other researchers sought out ways to share information about infections in different parts of the country.
A better understanding of infection rates in emergency departments where the virus was raging, for example, could have helped other cities and states prepare for a surge in their area, Wilcox said.
“The need is definitely there,” he said.