Apr. 8—This month, new federal guidelines took effect which will institute broad changes in how patients can access their medical information.
Health care patients across the United States will now have unprecedented access to their personal medical records. Doctors and other providers are now required by law to immediately release test results to patients, and give them — at no cost — copies of their medical notes.
The changes stem from 2016's 21st Century Cures Act, a far-reaching bill which also boosted medical research funding and, according to proponents, streamlined the Food and Drug Administration approval process for new drugs and promoted integration of databases across health care providers.
Dr. Henry Capps, executive vice president and chief information officer at Wellstar Health System, said the immediate access will change how patients everywhere experience their health care. As Capps said, "the intention of the law (is) to empower consumers and patients with their information to arrive at better outcomes."
Capps said the law's purpose of promoting transparency is a good one. But giving patients unfettered and instant test results could make for some harrowing situations.
"Picture some sort of lab or imaging or pathology that comes back with a nondescript but scary term — 'mass identified,'" Capps said. "In that scenario, the patient is going to have no idea what that mass is, and without the context of the physician's or clinician's interpretation, will instantly be concerned.
"It raises doctors' and other clinicians' anxiety about the patient's experience of that. So the challenge that doctors feel about this has nothing to do with the underlying philosophy of the law ... but about the reality that there are times when that information is confusing, or scary, or challenging for a patient to be able to interpret themselves."
As Capps went on to explain, where in the past a patient might have received a call from their doctor to inform them of their test results or ask them to come in for a visit, the patient could now receive an email which merely says the result of their tests.
According to OpenNotes, an advocacy group which lobbies for open access to medical records, the Cures Act also requires health care providers to share a litany of documents with patients. Those include consultation and discharge notes, imaging and pathology narratives and any other such scribblings on the doctor's clipboard.
Those changes don't affect the security of medical information, however. Laws governing the release of records under the Health Insurance Portability and Accountability Act remain fully intact, Capps said.
Wellstar says it has long been planning to incorporate the Cures Act changes, and was ready far in advance of the April 5 deadline.
"We have shared information for years this way," Capps said.
As test results are released, patients will also simultaneously receive a separate message with additional context and information from Wellstar. Doctors will also be able to see when the patient has reviewed those messages, in order to better tailor their conversations to the patient. The provider has also rolled out what they call "consumer facing messaging" to educate its patients on the new guidelines.
"We're working on making sure that we're reaching out to those patients and helping them know what's next," Capps said. "Because ultimately, that's what patients want to know — am I OK?"