When the Diagnosis Arrives by App: Why Most Patients Still Want a Human Voice
Key Takeaways:
- In a UT Southwestern survey of more than 2,400 people diagnosed with cancer, 75% said they would prefer to receive the news directly from their physician – in person or by telemedicine – rather than through an electronic patient portal.
- More than half of those who first learned of their diagnosis via the portal were alone at the time, often without support from a clinician or family member.
- Researchers are calling for a more personalised approach, including better portal notification settings, tiered or delayed release of sensitive findings, and plain-language summaries of radiology and pathology reports.
A digital convenience with an emotional cost
Electronic patient portals have transformed how quickly people can see their own test results. For routine bloodwork or a clear scan, near-instant access is a welcome convenience. But the same speed raises a difficult question for clinicians: how should a new cancer diagnosis be communicated when a patient can open the result on a phone before anyone has had the chance to talk it through?
That tension has grown sharper since 2021, when a provision of the 21st Century Cures Act came into force in the United States. The regulation requires that patients have timely, unrestricted access to their electronic health information – which, in practice, means a growing number of people are discovering a new or recurrent cancer diagnosis through their portal, sometimes with no clinician present to interpret it or answer the questions that immediately follow.
What the UT Southwestern survey found
A new survey carried out at UT Southwestern Medical Center suggests that, for most people facing a cancer diagnosis, faster is not better. The findings, published in JAMA Network Open, show that 75% of respondents would prefer to learn about a cancer diagnosis directly from their physician, whether in person or through a telemedicine appointment.
The 2025 survey gathered responses from more than 2,400 people who were diagnosed with cancer at the Harold C. Simmons Comprehensive Cancer Center between 2019 and 2023, giving the researchers a substantial real-world picture of how patients want sensitive results delivered.
According to the study’s lead author, Sheena Bhalla, M.D., Assistant Professor of Internal Medicine in the Division of Hematology and Oncology and a medical oncologist at the Simmons Cancer Center, the broad enthusiasm for digital access does not extend neatly to oncology. “While most patients in the general population appreciate rapid electronic access to test results, the situation for patients with cancer is much more nuanced,” she said. “Learning about a cancer diagnosis without the ability to immediately ask questions or discuss next steps with a trusted clinician can add to the significant stress, uncertainty, and fear that patients experience.”
Preferences are not one-size-fits-all
The survey also revealed that there is no single right way to share a result. Preferences varied according to people’s prior experiences, how frequently they used their portal, and their demographic characteristics. Men, for instance, were more likely than women to prefer learning of a diagnosis through the portal.
For senior author David Gerber, M.D., Professor of Internal Medicine in the Division of Hematology and Oncology and of Epidemiology in the Peter O’Donnell Jr. School of Public Health, and co-Director of the Simmons Cancer Center Office of Education and Training, that variation is precisely the point. “These findings highlight the need for a more personalized, tailored approach to communicating sensitive and life-changing results,” he said. “Moving beyond a one-size-fits-all approach can help clinicians provide a more thoughtful, compassionate patient experience.”
The hidden consequence: facing the news alone
Perhaps the most striking insight concerns the circumstances in which people are receiving these results. Among those who learned of their diagnosis through the portal, more than half reported that they were alone when they read it.
Dr Bhalla described this as one of the most troubling side effects of real-time access. “That’s one of the most unintended consequences of real-time access,” she said. “Patients are often alone without support from their physician or family at one of their most vulnerable moments.”
Possible solutions for clinicians and health systems
The researchers are clear that the answer is not to roll back access, but to design around it more thoughtfully. They point to several potential measures, including raising awareness among both clinicians and patients of the portal notification settings already available; developing tiered or delayed-release approaches for particularly sensitive findings; and integrating supportive digital tools such as plain-language summaries for radiology and pathology reports.
Policy is beginning to catch up. Since the Cures Act took effect, three states – including Texas – have enacted laws permitting the delayed portal release of cancer-related and other sensitive results, giving care teams a window to reach out before a patient is left to interpret difficult news on their own.
Looking ahead
For the study’s authors, the work is a starting point rather than a conclusion. “Further study and increased interdisciplinary collaboration among oncology clinicians, health services researchers, and digital health experts can help us better understand how patients receive and react to cancer diagnoses,” Dr Bhalla said. “Our goal is to increase awareness of this issue and help drive innovative approaches to patient-centered communication.”
Source: UT Southwestern Medical Center
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