Receiving a cancer diagnosis in the era of electronic patient portals: Patient experiences and communication preferences.

358 Background: The 21st Century Cures Act Information Blocking Rule, enacted in April 2021, mandates the immediate release of all medical test results to patients through electronic health portals. While this policy enhances access to and exchange of health information, it has also raised concerns about the unintended effects of disclosing life-altering diagnoses—such as cancer—prior to patient-clinician communication. To better understand the patient perspective, we examined the experiences and communication preferences of individuals within a contemporary oncology cohort. Methods: Patients first diagnosed with cancer between January 2019 and December 2023 at an academic cancer center were invited to participate in a brief online survey assessing demographics, cancer history, use of the electronic patient portal (MyChart), and their experiences learning about their cancer diagnosis. We analyzed associations between these factors and the method by which patients received their cancer diagnosis, as well as their preferences for future communication, using Chi-square and T-tests. Results: Of 14,566 surveys delivered, 2,596 responses (18%) were received, of which 2,267 (87%) were complete. Half of the respondents were female, and the median age was 68 years (IQR, 61-74). The majority (63%) of patients were diagnosed with cancer after 2020, and 43% reported using MyChart at least once per week. Most respondents (84%) first learned of their cancer diagnosis through an in-person visit, televisit, or phone call (“clinician first”) rather than initially through the portal. Receiving a cancer diagnosis through MyChart was more common among younger patients ( P < 0.001), those who utilized the portal more frequently ( P = 0.006), and women ( P = 0.03). When asked about the future, 75% of patients preferred to receive a new cancer diagnosis first from a clinician. Respondents who preferred to receive this information immediately via MyChart were more likely to be men ( P < 0.001) and to report higher portal utilization ( P < 0.001). Patient age, educational level, and year of cancer diagnosis were not associated with communication preferences. Among the 163 patients who received an initial cancer diagnosis via MyChart, 73 (45%) preferred to receive future cancer diagnoses from a clinician. Conclusions: Most patients previously diagnosed with cancer preferred to receive a new cancer diagnosis from a clinician rather than immediately via the patient portal. Future interventions and policies that align the delivery of sensitive test results with patient preferences are essential.

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Publication Details

Journal
JCO Oncology Practice
Published
2025-10-01
DOI
https://doi.org/10.1200/op.2025.21.10_suppl.358
Primary Topic
Electronic Health Records Systems
Type
article
Field-Weighted Citation Impact
0.00
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article

Receiving a cancer diagnosis in the era of electronic patient portals: Patient experiences and communication preferences.

Jeremy Louissaint, Heather Kitzman, Alana L. Christie, Ruchira Garg et al.
JCO Oncology Practice
Electronic Health Records Systems
article

Receiving a cancer diagnosis in the era of electronic patient portals: Patient experiences and communication preferences.

Jeremy Louissaint, Heather Kitzman, Alana L. Christie, Ruchira Garg, Sheena Bhalla, David E. Gerber, Lynne V. Abruzzo, Meera Patel, Song Zhang, Donglu Xie
article en

Abstract

358 Background: The 21st Century Cures Act Information Blocking Rule, enacted in April 2021, mandates the immediate release of all medical test results to patients through electronic health portals. While this policy enhances access to and exchange of health information, it has also raised concerns about the unintended effects of disclosing life-altering diagnoses—such as cancer—prior to patient-clinician communication. To better understand the patient perspective, we examined the experiences and communication preferences of individuals within a contemporary oncology cohort. Methods: Patients first diagnosed with cancer between January 2019 and December 2023 at an academic cancer center were invited to participate in a brief online survey assessing demographics, cancer history, use of the electronic patient portal (MyChart), and their experiences learning about their cancer diagnosis. We analyzed associations between these factors and the method by which patients received their cancer diagnosis, as well as their preferences for future communication, using Chi-square and T-tests. Results: Of 14,566 surveys delivered, 2,596 responses (18%) were received, of which 2,267 (87%) were complete. Half of the respondents were female, and the median age was 68 years (IQR, 61-74). The majority (63%) of patients were diagnosed with cancer after 2020, and 43% reported using MyChart at least once per week. Most respondents (84%) first learned of their cancer diagnosis through an in-person visit, televisit, or phone call (“clinician first”) rather than initially through the portal. Receiving a cancer diagnosis through MyChart was more common among younger patients ( P < 0.001), those who utilized the portal more frequently ( P = 0.006), and women ( P = 0.03). When asked about the future, 75% of patients preferred to receive a new cancer diagnosis first from a clinician. Respondents who preferred to receive this information immediately via MyChart were more likely to be men ( P < 0.001) and to report higher portal utilization ( P < 0.001). Patient age, educational level, and year of cancer diagnosis were not associated with communication preferences. Among the 163 patients who received an initial cancer diagnosis via MyChart, 73 (45%) preferred to receive future cancer diagnoses from a clinician. Conclusions: Most patients previously diagnosed with cancer preferred to receive a new cancer diagnosis from a clinician rather than immediately via the patient portal. Future interventions and policies that align the delivery of sensitive test results with patient preferences are essential.

JCO Oncology PracticeVol. 21(10_suppl)
Southwestern Medical Center (US), Southwestern Medical Center (US), The University of Texas Southwestern Medical Center (US)
Openalex Percentile: Top 69%
Electronic Health Records Systems
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