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Who has Access to What? Adolescent Access to Personal Health Information

Posted on August 29, 2016 by Joan Roch

A lot of organizations are interested in giving people more access to their health information. They are building portals and apps so people can have that access.

But a question that always arises is: “Should people under the age of majority be able to access portals in the same way as someone over the age of majority?” Currently, the age of majority is 18 years of age in some provinces/territories and 19 in others. This is the age at which an individual attains full rights and responsibilities in society, such as the right to vote and to consume alcohol.

Until that age, the individual is accorded special protections. Think of the Youth Criminial Justice Act which applies to children between the ages of 12 and 17. It is based on the principle that youth are less morally blameworthy than adults.

That said, people under the age of 18 do have rights. Think of the right to drive and the right to work. They can also make some decisions related to medical treatments if the medical practitioner is confident that they have the capacity to understand the decision and its impact.

It is evident that laws evolve to reflect changing social norms. Apparently, at one time in the “common law,” persons under the age of majority were considered to lack decisional capacity and were automatically deprived of the right to make decisions about their medical treatment. But, the law gradually recognized that children are entitled to a degree of decision making autonomy reflective of their evolving intelligence and understanding, in accordance with the severity of the potential consequences of the treatment. This was called the common law “‘mature minor’” doctrine.

So what about a minor’s access to their own health information through a portal on a real-time basis?

It’s reasonable to expect that people under 18 will want to see their health information. They are often responsible for managing their health conditions, such as diabetes.

And in fact it is reasonable to expect persons under 18 to be very adept at using portals and apps. They are growing up with everything online.

Currently health information laws across the country ensure that individuals have the right to access their own health information. Age is a factor in only one jurisdiction; Quebec requires the individual to be 14 years of age or older to access their personal health information.

Several jurisdictions do however require consent for the purposes of collection, use and disclosure of health information to be knowledgeable or informed and some statutes require the individual to have the capacity to make choices. It is not clear if those same principles, apply to the individuals’ “accessing” their own information.

What is clear is that in the digital health world of remote access portals and apps, there is not likely to be a care provider readily available to assess the minors’ capacity or to assess the child’s knowledge of the purpose of health information collection, use and disclosure and their ability to make an “informed” decision.

So custodians are left with the question of how much access to give to persons under the age of majority through portals and apps and, whether or not rules can be built into the portals to reflect those decisions. Some custodians are choosing to not permit access to anyone under the age of majority while others are establishing age thresholds that increase access rights as the individual passes certain ages.

What should the rules be? Should there be one consistent rule adopted across the country? What is a reasonable approach in our current environment? What do you think? We’d like to hear from you.

Stay tuned for the second installment of this blog series in which we explore what Canadians think about this topic. Feel free to send us your comments on this topic.

Interested in learning more about this topic? Join our webinar on September 15 at 1p.m. ET.

Have a comment about this post? We’d love to hear from you.


Joan Roch blog bioJoan Roch

As Chief Privacy Strategist for Canada Health Infoway Ms. Roch is instrumental in ensuring that privacy is addressed throughout Infoway’s digital health initiatives. In this thought leadership role she spearheads the development of landmark reports, identifies emerging issues, contributes to legislative developments and promotes the importance of considering novel, practical approaches to privacy.

 

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