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Adolescent Access to Digital Health Records — Results of an Environmental Scan

Posted on October 11, 2016 by Cassie Frazer

Have you ever wondered how the “electronic health system” will know who you are and whether or not you have the right to access your personal health information (PHI)? Depending on one’s age, the answers to these questions may vary. As an adult, one may just assume they have a right to their health information; yet a young child will not likely have given these concepts a thought. For individuals aged somewhere in between however, such as a 14- or 16-year-old, having access to one’s own electronic health information may be of increasing interest and importance.

In an earlier blog, we shared some highlights of a privacy legal framework review that had been conducted to consider the applicable Canadian health information privacy statutes and other legislation relevant to adolescents’ rights of access and the collection, use and disclosure (CUD) of PHI. In this blog, we highlight the results of an environmental scan that set out to understand how jurisdictions within Canada, other countries, organizations and associations, manage or recommend the management of, adolescent electronic access to PHI. The scan consisted of an academic and grey literature search, a review of organizational websites, policy and practice guidelines (national and international) as well as key informant interviews. The full details of this research are available on Infoway’s website.

This investigation revealed that there is no standard, agreed upon protocol or policy to manage adolescent electronic access to PHI. Across the country and internationally, there is quite a large variation in practice, although there is general agreement that individuals benefit by having this electronic access as well as the ability to share their PHI. These benefits include improved communication and care, and improved engagement in personal health and wellness.

Confidentiality is a key issue for adolescents as they worry about who may see their information. The academic literature points to a general concern that youth may avoid treatment, or not provide sensitive information to their care providers if their confidentiality cannot be assured. Parents may also worry about being left out of the loop if they do not also have access to their child’s PHI. Information from the literature and key informant interviews suggests that health care providers and delivery organizations should encourage parent-child communication, while still respecting the adolescent’s rights related to their PHI. One author noted that “parents are receptive to learning about why confidentiality is important [to their child] and often change their views” (Berlan & Bravender, 2009). As an added benefit, if confidentiality concerns can be addressed, “adolescence may be an ideal time period to empower young people to take responsibility for their own health and begin the transition to independent engagement with the health care system” (National Institute for Health Care Management Foundation).

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Both the literature and key informant interviews supported the notion that adolescents who can make a decision about their treatment can also expect confidential access to their PHI related to that treatment. For policy makers however, the fact that consent can be temporal and situation-dependent can make it difficult to consistently link consent to treatment with consent to access or for the CUD of PHI. As such, many organizational or facility-specific policies may instead reference specific age limits. There is recognition this may be easier to apply at the organizational level as that institution may have knowledge of, or a relationship with the adolescent. This may be more difficult to do at the “system” level however, involving multiple organizations or health care settings.

As this complex topic continues to evolve, vendors, health care providers, delivery organizations and policy makers need to continue to work together to ensure that adolescents’ rights around access and the CUD of their PHI are maintained. There is a need to ensure that the technological solutions meet the business and clinical needs; and there is a need to ensure that health care providers, parents, and adolescents become more informed and educated about the legislation, individual rights and confidentiality.

What are your thoughts on this topic? How does your organization handle this issue? I would love to hear from you. Let’s keep the conversation going!

This is the second blog in this series, a series on adolescent access to personal health information.


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Cassie FrazerCassie Frazer

Cassie Frazer has 20 years of health care experience working in numerous roles, including 12 years as a front-line Respiratory Therapist. She has a Bachelor of Science from Queens University and a Masters in Heath Administration from the University of Toronto. She was a co-founder of the Pan-Canadian Change Management Network, a leading contributor to the National Change Management Framework and is a certified health informatics professional. Cassie currently works for Canada Health Infoway as the Program Director for Consumer Health & Innovation. Within the broad portfolio of digital health initiatives she manages, she is able to leverage her experience and interests in change management, health informatics and innovation.


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