Some Alberta doctors are warning a move by the provincial government to increase the access parents have to the medical records of teenagers could put some patients at risk.
Until this week, parents and guardians could only access the online personal health information of children under the age of 12.
The Alberta government has now extended that access up until a teenager turns 18.
The change came into effect on Monday.
“Parents and guardians play a critical role in supporting their children’s health, and access to health information helps them make informed decisions, obtain required care, and ensure continuity of care,” a government spokesperson said in a statement emailed to CBC news.
The change applies to Alberta’s MyHealth Records portal, which provides access to information like lab results, prescriptions, diagnostic reports, immunization records and appointment summaries.
“I am concerned because I think this jeopardizes the health care of certain adolescents,” said Dr. Sam Wong, the president of the Alberta Medical Association’s section of pediatrics.
He’s been inundated with emails from doctors around the province who were caught off-guard by the move.
“Colleagues have searched me out to discuss this issue,” he said. “It is a big concern of theirs — a huge concern,” he said.
According to Wong, the change could deter some teens from seeking care for sensitive issues such as contraception.
“Does that then lead to a risk of pregnancy if they don’t get the medication? And that’s a distinct possibility,” he said.
The Canadian Paediatric Society has also weighed in, arguing confidentiality is essential to delivering quality adolescent health care.
“By ensuring appropriate private care, clinicians can empower adolescents to develop agency, autonomy, trust, and responsibility for their own health-care decision-making and management,” a spokesperson said in an emailed statement.
“Concerns about privacy can be a significant barrier for teens, who may delay or decline essential treatment or followup care if they cannot be assured of confidentiality.”
According to the society’s 2023 position statement, teens are less likely to disclose information about substance use, mental health and sexuality when confidentiality cannot be guaranteed.
The document also noted not all adolescents have parental support and, in some cases, disclosure of sensitive information could put a teen at risk of abuse, maltreatment or getting kicked out.
Long-term impacts
“If they’re not able to access that care, because they’re scared [or] frightened of disclosing information, then clearly that actually can result in adverse health outcomes,” said Dr. Stephen Freedman, a professor of emergency medicine and pediatrics at the University of Calgary’s Cumming School of Medicine.
Freedman said it’s common practice in the emergency room to speak to adolescents alone — away from the caregiver — in sensitive situations.
That could include a scenario where a teen girl is experiencing abdominal pain and may not be comfortable discussing sexual activity in front of a parent.
“That is a confidential relationship that we do not feel should be breached,” he said.
“That really does compromise the care that we can provide to teenagers if we can’t have those conversations and do testing with confidence that we will be able to ensure that confidentiality remains after we see them.”
And the implications can be long-term, he noted.
Untreated sexually transmitted infections, for example, can increase the risk of pelvic inflammatory disease and impact someone’s ability to have children down the line, he said.
Freedman is also concerned that caregivers will see information about tests or prescriptions that occurred prior to the change and that were done with the understanding of confidentiality.
That could erode trust between the teen and a health-care provider as well as a teen and their caregiver, he said.
The province confirmed parents will be able to see some historical information related to lab results, prescriptions and visits to facilities that are part of the province’s Connect Care system.
Under the new rules, 16- and 17-year-olds are able to request, through a health-care provider, that a parent’s access be revoked.
‘Misalignment’
In Canada, the mature minor principle, which is part of common law, recognizes the decision-making capacity of adolescents, according to health law expert Lorian Hardcastle.
“Most provinces have this notion that minors can consent to treatment without parental involvement,” said Hardcastle, an associate professor in the faculty of law and Cumming School of Medicine at the University of Calgary.
“This change creates a misalignment between the ability to get treatment without your parents’ involvement, yet now your parents will be able to see records of that treatment, potentially.”
The availability and rollout of online medical records varies widely across the country, making provincial comparisons with regards to parental access difficult, says Hardcastle.
In British Columbia, for example, parental access ends at the age of 12, according to the provincial government’s website. Information about dependents is currently limited to their immunization history.
In Saskatchewan, the cut-off age is 14. A spokesperson said parents and legal guardians may request access to the health information of children under the age of 14. Teens 14 and up, who create their own online health record account, can choose whether to share access with their parents.
“This approach, introduced in 2021, balances a parent or guardian’s role with a minor’s legal right to privacy, which is important to ensure youth feel safe accessing health care, including sensitive health services,” said a statement from an eHealth Saskatchewan spokesperson.
In Prince Edward Island, which is in the early stages of its electronic medical record rollout, residents must be 16 years of age or older to access parts of their personal health information. That province said parental access is planned for future phases.
The 2023 Canadian Paediatric Society position statement said online records are still evolving, and most are not designed to provide item-specific parental access controls.
“The optimal solution would be to develop a separate portal for adolescents when they are deemed mature minors, but such transitional technologies are not readily available,” it said.
In a written statement, the Alberta government acknowledged the rights of mature minors but noted there is no universal approach in terms of how provinces deal with access to personal health information.
“Protecting patient privacy and respecting the rights of mature minors are legislative requirements,” said Maddison McKee, the press secretary to Alberta’s Minister of Primary and Preventative Health Services.
“Safeguards are in place that allow health-care providers to limit or remove parental access to a child’s online health information where appropriate, including to minimize impacts on youth seeking sensitive or essential health services.”
The province said it has submitted a privacy impact assessment to the Office of the Information and Privacy Commissioner of Alberta. A spokesperson with that office confirmed to CBC News it is reviewing the submission and discussing it with government.