Before, patients had a legal right to their medical records, but there were challenges. Sometimes patients had to wait a long time to get copies, or they had to pay fees.
Then-vice-president Joe Biden previously shared that when his son was in cancer treatment that the family struggled to get relevant health records that needed to be shared between providers, highlighting how even highly connected people had struggled with the old rules.
Things like test results are now available right away to the patient, where before the rule, clinicians would have time to review results before presenting them to patients.
The change in medical records was part of the 21st Century Cures Act, signed into law in December 2016. Violations of the law can be reported to HealthIT.gov.
Brown said Kettering Health decided to go live with the new system in November 2020 because they had done the work to prepare for it. About 60% of Kettering Health’s patient volume has a MyChart account set up where they would be getting those updates. Of those, about 70% are patients who go to Kettering Health for routine care.
Dr. Marc Belcastro, chief medical officer for Premier Health, said when talking about transparency there’s a camp that wants complete transparency but there’s also a camp concerned that a lay person will have undue stress or won’t correctly interpret the data.
“I think what ends up happening, having been involved in various transparency throughout my 30-year career practicing medicine, is that it never was as bad as we imagine. The things we thought might happen or were concerned about were never to the level we might have feared,” Belcastro said.
That doesn’t mean there aren’t situations with confusion or undue stress.
Belcastro said one challenge is patients might not be familiar with the language that physicians use to take notes and talk to each other.
If a patient is anemic, there are plenty of benign and common causes, but there’s also a possibility it could stem from colon cancer. The physician might put in the notes the top three or five things that could be causing the lab change, including the possibility of cancer, and work through the list starting with the most common and easy-to-check possibility.
“But if I would open up that note, I would see my doctor wrote down ‘colon cancer,’” Belcastro said.
And if it is a Friday night, the patient might read the note and have anxiety all weekend, he said.
Brown said there are some exemptions to the rules for some sensitive information, like some behavioral health notes.
“There was the whole fear of ‘I don’t want somebody to find out they have a terminal illness before I even get a chance to talk to them’ so there’s safeguards in place to make sure that those sorts of things are not shared in real time,” Brown said.