An organization focused on patients with congenital heart defects has been lobbying Ontario’s Minister of Health to change the province’s current policy regarding health records of children. The group wants records to be kept indefinitely, rather than being potentially destroyed 10 to 15 years after a child reaches the age of majority.
Current Ontario Policy on Medical Records
Currently in Ontario, doctors and hospitals are required to retain medical records and documentation for at least 10 years after a patient turns 18. The College of Physicians and Surgeons of Ontario (CPSO) recommends lengthening this time to at least 15 years, in compliance with the Limitations Act.
This concerns parents of children with serious conditions and/or illnesses, or those who undergo surgery when they are young. The Canadian Congenital Heart Alliance, a volunteer-run registered charitable organization made up of patients with congenital heart defects, their friends, families, and the medical community, has been lobbying for change.
The issue of keeping medical records is top of mind for those with congenital heart defects. In 2015, the Alliance wrote to Health Minister Eric Hoskins, noting that more than 250,000 Canadians are living with congenital heart defects, and 95% of those diagnosed with such defects in childhood survive into adulthood. 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 follow-up care by cardiologists and surgeons trained in adult (congenital heart disease), as per the current recommendations for CHD patient care.
Recommendations for Moving Forward
The Alliance is asking for medical records to be kept for life, and that a “medical passport” be created for patients so that all their doctors could access information about past and current medical history, including surgeries and medications.
The Alliance believes that the creation of such a “passport” could result in better and more cost-effective medical care.
Parents of Children with Serious Conditions
A London, Ontario mother, who chairs the London chapter of the Alliance, and whose 12-year old daughter was born with a congenital heart defect told the Toronto Star that she initially had “no idea” that medical records were not kept for life. She said that as a parent of a child with a serious condition, who was consumed with her child’s significant health issues during their first few years of life, the last thing on her mind was the future of such records. In her case, her daughter had been airlifted to Sick Kids shortly after birth, and then underwent open heart surgery at the age of 20 months.
The mother emphasizes the need to guarantee that such information would be part of the documents given to future health-care providers, particularly those of individuals with congenital heart issues, since the surgeries they have in the first few years of their lives are simply “repairs” and cannot fully correct the heart defects. She wonders what the doctors who her daughter may see in adulthood will reference if they want to know what happened during her early surgery.
The mother also noted:
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 Ministry’s Response
The Ministry of Health has told the Alliance that it will defer to the CPSO, which is responsible for record retention regulations province-wide.
Progressive Conservative MPP Jeff Yurek, who is the Tory health critic and who personally delivered the Alliance’s letter to the Minister of Health, believes that the Ministry needs to step in and take the lead. If the Ministry does so, says Yurek, any potential new rules would cover all medical professionals. He notes that this should not be difficult with the move to electronic records.
The CPSO has said that the issue of medical record retention will likely be up for review in 2018, and that consultations will be held. We will continue to follow developments in this matter, and will provide updates as they become available.
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