Patient Perspectives on Electronic Communication of Cancer Diagnoses
Menée aux Etats-Unis par enquête auprès de 2 412 patients atteints d'un cancer, cette étude analyse leurs expériences et leurs préférences concernant la communication du diagnostic de la maladie
Introduction: The Information Blocking Provision of the 21st Century Cures Act Final Rule, implemented in April 2021, mandates that patients have timely, unrestricted access to their electronic health information.1 With penalties of up to $1 million per violation, to comply with this legislation many health systems have adopted immediate, automatic release of all test results through electronic patient portals. To date, few studies have explored how patients perceive immediate result release in oncology, particularly related to cancer diagnosis communication.2,3 We examined the experiences and communication preferences of patients who received a cancer diagnosis in the years preceding and following the Cures Act implementation.
Methods: English-speaking patients diagnosed with cancer at University of Texas Southwestern Harold C. Simmons Comprehensive Cancer Center between January 1, 2019, and December 31, 2023, were invited to participate in a brief online survey in January 2025 (eAppendix and eMethods in Supplement 1). The survey assessed self-reported demographics, cancer history, use of the electronic patient portal (MyChart [Epic Systems]), and how patients experienced learning about their cancer diagnosis. We analyzed associations between these factors, method of cancer diagnosis delivery, and preferences for future communication using
χ2 and t tests, with no adjustment for multiple comparisons. Analyses were conducted at the .05 significance level using SAS version 9.4 (SAS Institute, Inc). The study was approved by the University of Texas Southwestern Medical Center institutional review board with a waiver of informed consent because patient identifiers were not collected. We followed the American Association for Public Opinion Research (AAPOR) reporting guideline for survey studies.
Results
:
From 14
561 delivered surveys, we received 2412 responses (17%). Compared with nonresponders, responders were more likely to be older than 65 years of age (1271 [63%] vs 6096 [51%]), male (1186 [50%] vs 5460 [46%]), non-Hispnic White (1909 [80%] vs 6876 [66%]), and married or living with a partner (1783 [75%] vs 7266 [66%]) (all P < .001). Information on race and ethnicity was collected for this study to assess the generalizability of findings across diverse populations.
Most respondents 1923 (84%) received their cancer diagnosis through communication from their clinical team (1355 [59%] in-person and/or telemedicine visit; 568 [25%] telephone), while 170 (7%) learned their cancer diagnosis through the portal. Characteristics associated with initial cancer diagnosis notification method are shown in Table 1.
JAMA Network Open , article en libre accès, 2026