Healthcare providers are moving into the complex world of sharing and sometimes selling patient data, but will have to address privacy concerns and maintain patient trust to be successful.
HCA Healthcare in January announced plans to share de-identified data on COVID-19 patients treated at its facilities with HHS' Agency for Health Research and Quality and a consortium of universities for COVID-19 research. In a separate venture, 14 health systems—including AdventHealth, Providence and Tenet Healthcare—in February launched Truveta, a for-profit company that will aggregate and de-identify data from the founding providers for research.
The projects are still in early stages, with limited details shared to date.
HCA, a for-profit hospital chain based in Nashville, hasn't yet selected specific topics for research, but is currently evaluating proposals from groups in the consortium, and Truveta hasn't shared details on its business model. But both are hoping to glean new insights by tapping into vast clinical data collected as part of patient care.
Having standardized patient data available and ready to share with external researchers could accelerate discoveries and make it easier to collaborate. It could also underpin advancements in artificial intelligence and precision medicine, which rely on having standard, longitudinal data from a range of patients.
"There are a number of research questions that large-scale data analytics can really help with," said Cora Han, chief health data officer at University of California Health, who isn't involved with either venture.
Building repositories of patient data isn't a new trend, as healthcare players for years have tried to bring together diverse data to serve as a central resource for research.
The National Institutes of Health in 2018 launched the All of Us Research Program, an effort to collect medical histories, lifestyle information and genetic data from 1 million people across the U.S. Last year it began beta testing a platform where researchers access and analyze data from the project's first 225,000 participants and has been returning early genetic results directly to participants.