Most patients who receive a cancer diagnosis still prefer to learn of the diagnosis from their doctors rather than from reports uploaded to their online health portal, according to findings of a survey conducted at the University of Texas Southwestern Medical Center. Findings were published as a research letter in JAMA Network Open.
“While most patients in the general population appreciate rapid electronic access to test results, the situation for patients with cancer is much more nuanced,” said lead study author Sheena Bhalla, MD, Assistant Professor of Internal Medicine in the Division of Hematology and Oncology, a medical oncologist at the Harold C. Simmons Comprehensive Cancer Center at UT Southwestern, and Director of Thoracic Medical Oncology Clinical Operations at Simmons Cancer Center. “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.”
“These findings highlight the need for a more personalized, tailored approach to communicating sensitive and life-changing results,” said senior author David Gerber, MD, Professor of Internal Medicine in the Division of Hematology and Oncology and of Epidemiology in the Peter O'Donnell Jr. School of Public Health, co-Director of the Simmons Cancer Center Office of Education and Training, and holder of the David Bruton, Jr. Professorship in Clinical Cance Research. “Moving beyond a one-size-fits-all approach can help clinicians provide a more thoughtful, compassionate patient experience.”
Background and Study Methods
Due to the Information Blocking Provision of the 21st Century Cures Act Final Rule, all patients are required to be able to receive unrestricted, timely access to their electronic health information, leading to the release of reports, scan findings, lab results, and more through online health portals. As a result, patients may often find out about a cancer diagnosis through such health information prior to speaking with their doctor.
Researchers at the UT Southwestern Medical Center conducted a survey in January 2025 of English-speaking patients diagnosed with cancer at their center between January 1, 2019, and December 31, 2023, which included patients who received diagnoses both before and after the final rule was implemented.
The survey asked participants questions regarding demographics, cancer history, use of the patient portal, and their experiences regarding their cancer diagnosis.
Key Findings
There was a total of 2,412 responses to the survey.
The majority of respondents (84%) received their cancer diagnosis via communication from their clinical team, either in person or through a telehealth visit (59%) or by telephone (25%). Only 7% learned of their diagnosis through the patient portal.
Seventy-five percent of respondents preferred clinician team communication when getting a diagnosis—in-person or by telehealth visit preferred by 48% and by telephone preferred by 27%, while 23% preferred portal delivery. Preference for learning of their diagnosis through the portal was more common among men and higher frequency portal users.
For those who did receive their diagnosis via clinician team communication (n = 1,923), 79% preferred this method for future diagnosis-related communication, while 20% preferred future communication via the portal.
On the other hand, of the 170 participants who received a diagnosis via the portal, 54% preferred that method going forward while 42% preferred an initial clinician communication. Seventy-one percent of these patients were home at the time of learning of their diagnosis, and 59% were alone at the time. These patients were more likely to seek more information about their diagnosis, often relying on internet searches (48%).
“That’s one of the most unintended consequences of real-time access,” Dr. Bhalla said. “Patients are often alone without support from their physician or family at one of their most vulnerable moments.”
Fifteen percent of the respondents had a cancer recurrence, and 67% learned of their recurrence through clinician communication and 27% via the portal. For those who received the information via portal, 14% spoke with their clinical team within a day, 45% within 3 days, and 78% within a week.
“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.”
DISCLOSURES: For full disclosures of the study authors, visit jamanetwork.com
