Posted on November 7, 2016 by Cassie Frazer
As a parent of adolescents, naturally I was curious about the topic at hand — providing adolescents with access to their electronic personal health information (PHI); and I wondered about the perceptions of others in Canada as well. For me, the question was not, “should adolescents have access to their PHI” as I believe this right exists, but rather “how should this access be facilitated” in an electronic health record environment?
Infoway contracted Nielsen to conduct a pan-Canadian online survey of adults and adolescents as well as in-person focus groups to ask this question. Specifically, we were interested in learning more about adult and adolescent perceptions of the rights of access to PHI, willingness to share this access and mechanisms to enable this access electronically. Over 2000 surveys were completed by adults and adolescents; and a total of nine in-person focus group sessions were conducted in Vancouver, Toronto and Montreal.
Through the investigations we learned that both adults and adolescents agreed that adolescents should be able to view their PHI online. Both groups also noted the primary reason for this response was because “it was one’s right to view information about their own self or body.” In particular, older adolescents (16-19 year olds) were more likely to say adolescents should be able to view their PHI compared to younger adolescents (12-15 year olds). The prevailing opinion shared by survey and focus group participants was that as an adolescent matures, it was more important for them to take increased responsibility in the management of their care.
Although there was general support for allowing adolescents to view their PHI online, determining how this access should be granted was not quite as clear. Over 40 per cent of adults in the pan-Canadian survey group felt that parents should decide if adolescents could view their PHI. However, two-thirds (66 per cent) of adolescents felt this decision should be theirs to make. At the same time, both adults and adolescents did feel that parents should be able to view their adolescent’s PHI. This is good news for adults who may have otherwise been concerned that parents may not be able to properly care for their child without this information.
When survey and focus group participants were presented with various life scenarios, there was an overall perception that using age as a variable alone to determine adolescent access to online PHI may not be sufficient. Generally, with scenarios that focused on less sensitive topics, such as juvenile diabetes or a sports-related injury, age was seen as an acceptable variable to decide control over an adolescent’s online PHI. However, when the scenarios focused on more sensitive topics like underage drinking or sexual activity, responses were split between having both adolescents and adults view the health information or having adolescents view the information and then determine if their parents could also view it.
Please check out the complete report to learn more about the perceptions of Canadians on adolescent access to electronic personal health information. You may also be interested in the other research that was conducted on this topic, such as the privacy legal framework review or the environmental scan. What are your thoughts on this topic? I would love to hear from you.
This is the thrid blog in this series, a series on adolescent access to personal health information.
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Cassie Frazer has 18 years of health care experience working in numerous roles, including 12 years as a front-line Respiratory Therapist. As Program Director for Consumer Health and Innovation at Canada Health Infoway, Cassie is able to leverage her experience and interests in change management, health informatics and innovation within the broad portfolio of the digital health initiatives she manages.