A new survey of teen patients with cancer and their parents sheds light on a source of friction in adolescent oncology: How much access should parents have to their child’s patient portal?
While patient portals are intended to support communication and engagement, challenges arise when the patient is an adolescent. Balancing parental involvement in their teen’s complex cancer care with adolescent autonomy and privacy is an important, but poorly understood, factor.
The survey revealed that despite some challenges, “parents and adolescents overwhelmingly supported parental access to nonsensitive data” in the adolescent’s portal, the study authors wrote in the JCO Clinical Cancer Informatics.
This finding appears to be “at odds” with the current practice at almost half of healthcare systems, which limits parental access to adolescent portals and may indicate the need for broader policy changes, the authors explained.
However, in an accompanying editorial, Molly Talman, MD, and Nicole Wood, DO, explained that the findings highlight a need for “a shift in focus, from simply granting access to thoughtfully designing the experience of access.” A one-size-fits-all portal policy “may inadvertently burden caregivers, undermine adolescent trust, or create friction in communication,” the editorialists wrote.
Inside the Survey Findings
To better understand parents and teens’ perspectives on portal access, researchers conducted interviews with 48 adolescent-parent pairs at three academic cancer centers to explore the perceived benefits and drawbacks.
Most parents had accessed their adolescent’s portal (41 of 48 or 85%). Among those parents, 88% had read clinical notes and 27% reported using their child’s credentials to login. But, importantly, almost all adolescents knew their parents had accessed the portal (45/48, 94%).
The study identified five main benefits of parental portal access. Access helped parents better understand their child’s condition, coordinate care more effectively, communicate with clinicians, fulfill caregiving responsibilities, and — according to parents — strengthen their relationships with the clinical team. Access to lab results and appointment details allowed families to manage logistics more smoothly and prepare for complex clinic visits, particularly for interventions like transfusions.
One parent commented: “How can we help them if there’s something that we’ve missed? Or something that we don’t know. If we’re relying on 12- and 13-year-olds to tell us?”
Another highlighted their financial obligations to their child: “I guess I just figure they’re under my care until they’re 18, and I feel like that’s a right as a parent to be informed.”
From the adolescent perspective, parental involvement was often viewed positively as well. “My mom, she knows a lot more information than me…for her to be able to look back on it will be beneficial to her too,” said one patient. Others noted the importance of having their parents serve as translators for complicated information and buffers for difficult topics.
However, the study authors identified several key challenges of parental access. Adolescents and some parents were concerned about privacy, particularly around sensitive topics like reproductive or mental health, which they felt should remain confidential. One parent noted: “I think it may cause some older teenagers not to confide in their doctors if the parents can see it.” One teen expressed concern about getting into “trouble” if his parents knew about certain issues.
Other challenges included potential emotional distress around reading clinical notes without provider context. In some cases, participants worried that portal access could heighten family tensions, especially when parent-child relationships were strained. Some teens emphasized the importance of protections in situations where trust or closeness with a parent is lacking.
Brandon Hayes-Lattin, MD, who was not involved in the research, called the study an important step toward addressing the balance between parental rights and adolescent privacy.
But “more work needs to be done in balancing the perceived rights and needs of parents accessing the medical records of their minor children,” said Hayes-Lattin, medical director of the Adolescent and Young Adult Oncology Program, OHSU Knight Cancer Institute, Portland, Oregon.
Hayes-Lattin underscored that applying uniform access policies would be a challenge given the complexity of some patients’ situations. For example, he noted that he has treated incarcerated minors whose parents could not receive information. He has also treated pregnant teens and adolescent patients with estranged relationships with their parents.
This includes “parents who did not provide any financial support, those who were discovered to be abusive to their child, or those who prior to the cancer diagnosis were absent from their child’s life,” Hayes-Lattin explained. “Each of these circumstances requires nuance to navigate.”
From Access to Design: Rethinking Portal Policies
The study also highlighted the limitations of current electronic health record systems to provide parental access.
Some parents reported delays or confusion around proxy access. Others expressed frustration when the portal lacked useful or timely data. Despite these issues, many said access was nonnegotiable in the context of a cancer diagnosis.
However, editorialists Talman and Wood argued that portals should not be seen as one-size-fits-all tools, but as platforms that must evolve to meet the nuanced needs of patients, families, and clinicians.
Among their recommendations are more flexible systems that allow for role-based access and improved patient-controlled sharing options. These changes could give adolescents a greater voice in deciding what information is shared with parents, while still preserving parental access to essential information.
Hayes-Lattin echoed this sentiment, noting that “both the design of technologies and the policies around their implementation deserve robust input from adolescent and young adult patients themselves, from a broad array of backgrounds and circumstances,” he said.
Overall, the editorialists highlighted that patient portals should not be viewed solely as storage systems for clinical data but as tools that facilitate shared responsibility and trust. How this access is structured will be key in determining whether portals become bridges or barriers between care teams, patients, and their families.
“As we continue to digitize the cancer care journey, we must remain attentive to the ways in which technology intersects with vulnerability, responsibility, and identity,” Talman and Wood wrote.
The authors and editorialists reported some disclosures. Hayes-Lattin reported no relevant financial disclosures.