A patient’s personal health information can be released to the public with their consent, according to British Columbia’s information and privacy commissioner.
In Canada, “a patient’s information actually belongs to them,” Michael McEvoy said in an interview on Wednesday.
“Like all information that a public body holds about somebody, a person has the right to ask that public body for the information about them, subject to certain very limited exceptions,” he explained.
“But that is the general rule in British Columbia.”
The answers come days after the Fraser Health Authority declined to comment on the specifics of a patient’s case citing confidentiality concerns, even though Global News informed the authority that the patient’s family would consent — orally or in writing — to have the information released.
Fraser Health declined again on Wednesday to comment on the case, even though Global News provided written consent from the patient’s parents.
“I think most most medical and health authorities go out of their way to help individual patients in order to navigate the system,” said McEvoy, without commenting on any specific case.
“On some occasions that doesn’t happen and those authorities have to be reminded as to who the information belongs to, so that’s important.”
Eight-year-old Jaxon Glubis was rushed to the Abbotsford Regional Hospital on Dec. 27, 2021, with severe head pain and vomiting. His mother requested a CT scan for her son, but said the doctor told her he didn’t need one and sent him home with Advil and Tylenol.
Jaxon was rushed to the hospital again the next day. Worsened symptoms eventually pushed him to unconsciousness. He received a CT scan and within minutes, was put on life support.
Jaxon died on Dec. 28, 2021, at the BC Children’s Hospital of hematoma — a brain bleed — after emergency surgery was unsuccessful.
“There was so much blood his brain had swollen and pushed up against the other side of his head,” his mother, Cinzia Rossi, said in an earlier interview. “I feel like if he had had a glucose test, if he had had a blood test, if he had had pretty much any test … they would have been able to catch this.”
In a previous statement to Global News, Fraser Health said “privacy law” prevented it from speaking about Jaxon’s case. Until last month, it was unaware Jaxon had died at all.
“As the patient received care at BC Children’s Hospital following their presentation to Abbotsford Regional Hospital, we were not made aware of the outcome until the family recently reached out to our Patient Care Quality Office.”
The hospital’s site leadership is reaching out to the patient’s family to discuss their concerns, wrote Dr. Craig Murray, Fraser Health’s regional medical director of emergency medicine on May 27.
“The family recently reached out to Patient Care Quality Office and that process is underway.”
Jason Woywada, executive director of the BC Freedom of Information and Privacy Association, said health providers are the “caretakers” of patient information, not owners. The non-profit association promotes freedom of information and privacy rights in Canada, and aims to empower citizens through education on the information they control.
There are “limited circumstances” when a patient’s consent can be removed, Woywada explained, but the onus is on the entity to explain their legal basis for doing so.
“It’s always disappointing when we hear a public body use privacy as a scapegoat, and we do see that happening,” he told Global News. “When privacy is used as an excuse, rather than a legitimate reason to not talk about something, you know, it’s important to draw that distinction.“
In Jaxon’s case, he said there doesn’t appear to be a legal basis for withholding patient information.
“I don’t understand why my son doesn’t deserve a voice. It’s outrageous. It sickens me,” said his grieving mother, tears streaming down her face.