Have you noticed during the pandemic that the U.S. seemed to rely on other countries, like Israel and the UK, to predict the spread and inform vaccine policy? COVID exposed the fragmented reality of U.S. health records. This lack of accessible data and information contributed to the tension between what the public wanted to know and what scientists were able to say for certain. The NIH’s N3C database is starting to make a national healthcare database a believable possibility.
The National COVID Cohort Collaborative, N3C, collects medical records from millions of patients across the country, cleans them and grants access to groups studying the pandemic. These 6.3 million patient records from 56 institutions includes records from 2.1 million patients with the virus. Contributing organizations have pledged to keep updating this information for five years.
The U.S. spends nearly a fifth of its gross domestic product on health care but achieves worse outcomes than any other wealthy country. U.S. healthcare is built on a patchwork of incompatible archaic systems. Medical records are messy, fragmented and siloed by the institutions that “own” them, both for privacy reasons and because selling de-identified medical data is incredibly profitable. Federal, state and local privacy laws overlap and sometimes contradict one another.
The NIH was able to develop a framework for combining actual patient records from different institutions in a way that could be both private and useful. It wasn’t technology or lack of technology that got in the way, it was data governance and data formats that caused the problems. COVID forced an increased appreciation for the need to share data and motivated organizations to standardize governance and jointly used data models. Having health data from across the country located in a single, accessible national healthcare database significantly impacts the equitable distribution and delivery of care both through prevention, better communication and policymaking.
One of the stumbling blocks? The profitability of de-identified medical data mentioned earlier. Oracle paid $28.3 billion to acquire the electronic health record company, Cerner. “We’re going to solve this problem (of fragmented data) by putting a unified national healthcare database on top of all of these thousands of separate hospital databases. So we’re building a system where the health records of all American citizens not only exist at the hospital level but also are in a unified national healthcare database.” They didn’t spend $28.3 billion to donate the database. They aren’t the only ones in this race. Cerner has a competitor in Epic’s Cosmos product.
The Norwegian Public Health System successfully connected their health services across the country to improve data sharing and reduce the processing time for users to access data. Using a comprehensive web platform reduced the application processing time for health research projects from 17 months to 17 minutes.
Can the U.S. government successfully compete with Oracle and Epic for the creation of a national healthcare database? The successful control of the next pandemic may count on it.