The Information Blocking Provision of the 21st Century Cures Act Final Rule, which was implemented in 2021, mandates that patients have timely, unrestricted access to their electronic health information, including physician’s notes and diagnostic results, via electronic patient portals. However, a recent survey published in JAMA Network Open found that when it comes to cancer, 75% of patients would prefer to learn about a diagnosis directly from their physician, either in-person or via a telemedicine appointment.

 

“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 study lead author Sheena Bhalla, MD, in a University of Texas Southwestern press release. “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.”

 

A new cancer diagnosis can be overwhelming, prompting questions about treatment, survival and quality of life. Ideally, the diagnosing physician would be readily available to answer these questions.

 

“That’s one of the most unintended consequences of real-time access,” continued Bhalla. “Patients are often alone without support from their physician or family at one of their most vulnerable moments.”

 

This may leave patients to search for answers online, where misinformation abounds. Pro tip: You can always check out Cancer Health’s resources at Cancer 101: Newly Diagnosed? Start Here.

 

To study the impact of electronic health information access on patients diagnosed with cancer, researchers from UT Southwestern surveyed 2,412 patients diagnosed with cancer at Simmons Cancer Center between 2019 and 2023.

 

Most respondents (84%) received their cancer diagnosis from their clinical team, either over the phone or via an in-person or telemedicine appointment, but 170 people (7%) learned about their diagnosis through an electronic patient portal. Of those diagnosed through a portal, 71% were at home and 59% were alone, and nearly half (48%) sought more information about their diagnosis on the internet.

 

Overall, regarding a future cancer diagnosis, 75% of survey participants preferred to hear the news from their doctor, while 23% preferred an electronic portal. Among those who initially learned of their cancer diagnosis from a physician, 79% preferred this method for a future diagnosis, while 20% preferred a portal. Of those who were diagnosed via a portal, 54% preferred a portal for a future diagnosis, while 42% preferred to hear from a clinician.

 

“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,” said Bhalla. “Our goal is to increase awareness of this issue and help drive innovative approaches to patient-centered communication.”