Access to Alberta teens’ health records

EDMONTON – Alberta doctors say the provincial government’s decision to broaden parental and guardian access to their children’s medical records could put youth at risk of harm and infringes on their privacy.

Parents or guardians are now able to access the personal health information of their children until they are 18, including diagnostic imaging, dispensed prescriptions and appointments.

Previously, the age limit was 12 unless extended in certain cases, for example if a child has severe intellectual disabilities.

Under the new policy, a youth aged 16 and older can revoke parental access through a healthcare provider, but it will otherwise continue until the child becomes an adult.

Parents can submit an online request for access through their provincial health account until their child is 16, after which the request must go through one of the youth’s care providers.

Sam Wong, president of the Alberta Medical Association’s section of pediatrics, told the Globe and Mail that many members are “upset and angry” about the government decision, saying it creates an unnecessary barrier between physicians and their patients.

He said there were lengthy discussions between the government and physicians, who pushed back because of confidentiality concerns, but they were unsuccessful in changing the province’s position. Dr. Wong said some doctors had to sign nondisclosure agreements, unable to speak about the change until it occurred last week.

Dr. Wong is concerned patients may not see a physician or divulge information that is essential for proper care if their parents have proxy access. And, if confidential information is divulged, the patient may refuse medications or investigations needed for their condition, such as birth control or a pregnancy test.

“For a lot of families, it doesn’t really matter. They have nice, open relationships with their kids but, for some families and adolescents, it’s going to cause problems,” Dr. Wong said.

He criticized the Alberta government for focusing on parental rights without recognizing “adolescents as individuals with their own rights and confidentiality.”

The United Conservative government, under premier Danielle Smith, has made parental rights a major focus. Central to this effort are the limits that Alberta has been placed on gender diverse youth, including restricting access to gender-affirming care and requiring parental consent for name and pronoun changes in schools.

The changes to proxy access will better support parents and guardians, who play a key role in their children’s health, Maddison McKee, press secretary to Primary and Preventative Health Services minister Adriana LaGrange, said in a statement on last week.

She noted that there is no universal approach to this issue in Canada and that the age at which youth can access their own records ranges from 12 to 16. Youth 14-plus in Alberta who already have their own healthcare account are excluded from the policy change.

“Safeguards are in place that allow healthcare 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,” said Ms. McKee.

“Protecting patient privacy and respecting the rights of mature minors are legislative requirements.”

The mature minor doctrine allows children of any age to consent to treatment if a healthcare provider deems they have the maturity and capacity to make such a decision.

But Lorian Hardcastle, an assistant professor with the University of Calgary’s faculty of law and Cumming School of Medicine, said the new policy does not align with existing practices for the treatment of minors.

“The misalignment is that the patient can get care without parental involvement but parents may still be able to access this information if providers don’t take steps to ensure that doesn’t happen,” she said.

For Jake Donaldson, a Calgary-based physician who is part of a legal challenge against Alberta’s law limiting gender-affirming care, the new policy strikes at the foundation of care for younger people: confidentiality. He said the proxy changes will have wide-reaching impact on youth and adolescent healthcare.

“When young people don’t feel confident in their privacy, that their privacy will be respected, they will delay or avoid care altogether,” Dr. Donaldson said, adding that will result in consequences such as the spread of sexually transmitted infections, teen pregnancies or prolonging abusive situations.

CBC News reported that The Canadian Paediatric Society has weighed in, arguing confidentiality is essential to delivering quality adolescent healthcare.

“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 follow-up 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.

“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 (pictured), 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.”