Save kids’ health records for life, group says
Heart alliance argues crucial data could be lost if files are scrapped when patients hit 30
In Ontario, medical records can be destroyed when patients are around 30 years old — but it’s a growing concern for families whose children suffer serious illness or undergo surgery when they’re young.
Worried about what happens to those who require medical help as they age, the Canadian Congenital Heart Alliance has been lobbying for change.
“We all have faith in the system,” said Lisa Wright, who chairs the London, Ont. chapter and whose daughter was born with a congenital heart defect.
“You assume well, somebody’s got it — somebody’s got it on file.”
But there’s no guarantee someone does. Doctors and hospitals are required to retain documentation for at least 10 years after a patient’s 18th birthday. For legal reasons, the College of Physicians and Surgeons of Ontario recommends 15 years.
But as those born with congenital heart defects live longer, the issue has become more pressing, said Allan Weatherall, executive director of the alliance.
In 2015 the group wrote to Health Minister Eric Hoskins, noting more than 250,000 people across the country are living with health defects, and 95 per cent of those diagnosed in childhood now survive into adulthood.
“However,” the letter noted, “patient records are retained for only 33 years in Ontario and adults, whose records started in childhood, are now living into their 40s, 60s or beyond.
“Currently, these survivors do not have any records of their earliest conditions, nor childhood surgeries, which is required to allow proper followup care by cardiologists and surgeons trained in adult (congenital heart disease), as per the current recommendations for CHD patient care.”
They are asking for such records to be kept for life, with some sort of “medical passport” for patients that all their doctors can access “consisting of information about their medical history, surgeries, and medications — past and current.
“It is our belief that a ‘medical passport’ will ultimately result in better and more cost-effective care for Ontarians,” the letter states.
For Wright, thinking about the future of medical records “is the last thing on your mind” when you are consumed with a child’s serious health issues in the early years.
Her daughter Rachael, now 12, was airlifted to the Hospital for Sick Children in Toronto shortly after birth. She then underwent open-heart surgery at 20 months.
Wright had no idea records were not kept for life.
“We really do need to make sure that’s part of the information that the health-care providers or caregivers or patients are being provided. It should be an automatic thing — ‘would you like a copy of the health record?’ — that question is never asked.”
For children born with congenital heart issues, the surgeries they have early in life “are repairs. They don’t correct it completely. They will never have a normal heart as the rest of us,” she said.
Wright, who is chairperson of alliance’s Hearts of London/Middlesex, wonders what doctors will look back on “to see exactly what happened during that surgery,” as Rachael gets older.
“Some parents are very diligent about keeping health records, but we trust the system and we tend to assume that the doctors have those records and they will be there when they need them. The reality is, maybe somebody needs to be talking to us, as parents, to be thinking about that.”
The provincial Ministry of Health told the alliance it would defer to the College of Physicians and Surgeons of Ontario, which is responsible for the records retention regulations.
Progressive Conservative MPP Jeff Yurek, who personally delivered the letter to the health minister, said records contain “very pertinent information” and that the ministry needs to step in.
“People are living longer, and they might not expect any complications for 30, 40, 50, 60 years down the road,” said Yurek, the Tory health critic.
And if that happens, “there’s probably not anyone around who would have any detailed information on what occurred.
“If the ministry took the lead on this, (new rules) would cover all medical professionals” and ensure documents are kept for longer periods of time, said Yurek (Elgin-Middlesex-London).
With the move to electronic records, this should not be difficult, he added.
“This is very pertinent information” that should be kept for patients, Yurek said.
In British Columbia, childhood records are kept until at least age 35.
Weatherall also noted that if parents die, or families move to another province, records don’t necessarily follow.
The College of Physicians and Surgeons says this particular issue will likely be up for discussion in 2018, as part of a routine review, and consultations will be held.
“We trust the system and we tend to assume that the doctors have those records and they will be there when they need them.” LISA WRIGHT CHAIRPERSON AT LONDON, ONT., CHAPTER OF CANADIAN CONGENITAL HEART ALLIANCE