U.S. health giants form startup to share, analyze patient data

Fourteen of the largest U.S. health systems, led by Providence, have formed a startup to pool patient information, aiming to streamline efforts to analyze anonymous data to improve care, develop better therapies and drugs, and promote more equitable treatment of underrepresented groups.

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Called Truveta, the Seattle-based startup is led by former Microsoft executive Terry Myerson, who ran the software maker’s Windows business. It will combine records representing about 13% of U.S. hospitals, which will be anonymized to protect confidentiality, said Rod Hochman, Providence chief executive officer and chair-elect of the American Hospital Association. The venture, which is co-owned by the participating hospital systems, includes Chicago-based CommonSpirit Health, Tenet Healthcare, Trinity Health, Bon Secours Mercy Health and New York’s Northwell Health.

The goal is to let Truveta backers, as well as researchers at other institutions and in government, run analyses and use machine learning to draw conclusions from the massive volume of data the systems generate. Often researchers at each institution face a shortage of examples within their own data sets when looking for patterns, particularly for rarer conditions or specific types of cancer, or trials on drugs and therapies don’t include enough participants from minority groups who may have different outcomes. The challenge has become particularly clear during the COVID-19 pandemic, Hochman said .

“Nothing has pointed it out more than the pandemic that we have now,” he said. “The dearth of data is just making trying to do health care miserable.”

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Truveta plans to make money from selling access to this data. Projects will have to meet ethical guidelines determined by a committee of doctors, scientists and patients the company plans to set up — even with patients’ names removed from the data, ethical questions will be thorny. “We want to enable ethical research by everyone against this unprecedented, statistically significant insight into U.S. health care,” Myerson said. “Pharmaceutical companies, these 14 health systems, other health systems, public health.”

Some patients may be concerned about their information being used in this way. Other medical data aggregators are already trying to profit from health data, and de-identified data derived from patients is routinely bought and sold without most people ever realizing it. Once names, addresses and other identifiable characteristics are stripped out, the information is free from patient privacy rules and can be used freely.

Myerson said that as Truveta ramps up, providers will add notifications about what it collects to the health information forms that patients sign advising them of their rights under the Health Insurance Portability and Accountability Act, which governs health-care privacy practices in the U.S. “Part of the goal is helping people understand the greater good and what this can do for them as a patient and improve their care,” he said.

Hochman wants Truveta’s data collection to help with health-equity issues — some other databases rely on health insurance records and are disproportionately white and leave out the uninsured, he said. Truveta’s records cover all 50 U.S. states and a variety of demographics.

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Truveta, founded last year, has 53 employees and is hiring quickly. Myerson won’t say what technologies and software programs it will use to organize and store the data.

Health care was slower than many industries to switch from paper to digital records, with many U.S. practices and hospitals shifting only after the government offered billions of dollars in incentives. But stores of digital data — prescriptions, medical procedures, insurance claims — have grown rapidly. Companies are competing to collect and package medical data stripped of identifying information.

Such data is used by drug companies trying to develop new therapies, and health plans and medical providers trying to make care more efficient. One leading health data company, IQVIA Holdings, pegs the addressable market at $230 billion in its filings. IQVIA boasts data from 800 million patient records, spanning 35 petabytes and sourced from more than 150,000 suppliers, the company said.

Other large stores of health data in the U.S. come from health plans analyzing the millions of claims they process. Blue Health Intelligence, a licensee of the Blue Cross Blue Shield Association, draws on data from 200 million Americans, according to the company’s website. The nonprofit Health Care Cost Institute uses data from commercial health plans on 55 million people, and 40 million from Medicare, to better understand health-care spending trends. IBM Watson Health has also acquired health data providers, such as Truven Health Analytics in 2016.