Call it data liberation day: Patients can now access all their health records digitally  

Article by Casey Ross: “The American Revolution had July 4. The allies had D-Day. And now U.S. patients, held down for decades by information hoarders, can rally around a new turning point, October 6, 2022 — the day they got their health data back.

Under federal rules taking effect Thursday, health care organizations must give patients unfettered access to their full health records in digital format. No more long delays. No more fax machines. No more exorbitant charges for printed pages.

Just the data, please — now…The new federal rules — passed under the 21st Century Cures Act — are designed to shift the balance of power to ensure that patients can not only get their data, but also choose who else to share it with. It is the jumping-off point for a patient-mediated data economy that lets consumers in health care benefit from the fluidity they’ve had for decades in banking: they can move their information easily and electronically, and link their accounts to new services and software applications.

“To think that we actually have greater transparency about our personal finances than about our own health is quite an indictment,” said Isaac Kohane, a professor of biomedical informatics at Harvard Medical School. “This will go some distance toward reversing that.”

Even with the rules now in place, health data experts said change will not be fast or easy. Providers and other data holders — who have dug in their heels at every step  —  can still withhold information under certain exceptions. And many questions remain about protocols for sharing digital records, how to verify access rights, and even what it means to give patients all their data. Does that extend to every measurement in the ICU? Every log entry? Every email? And how will it all get standardized?…(More)”