Cancer patients are increasingly using electronic portals to obtain test results and communicate with health care providers, but studies and anecdotal reports have suggested these portals can be helpful or harmful in the context of cancer care.1,2
Cancer patients have reported feeling more informed and involved in their care when using patient portals, and providers have said portals can improve the coordination of care and motivate them to expedite communication about test results.3,4
However, some providers are concerned about patients receiving information outside of an in-person visit or call with a provider. They question whether it’s beneficial or even safe for patients to receive information they may not understand without explanation.
On the other side of the debate are patients who want access to their information right away, citing the anxiety of waiting for a test result and wondering if they will be diagnosed with cancer or if their cancer has returned.
“The main point of debate right now . . . is over access and the speed with which results should be released,” said Jeremy L. Warner, MD, of Lifespan Cancer Institute and Brown University in Providence, Rhode Island.
This debate has become increasingly relevant “in light of the 21st Century Cures Act,5 which mandates sharing health data with patients without delays in most cases,” said Julian Hong, MD, of the University of California, San Francisco.
“I think it’s very important for patients to have their results in a timely fashion, but, depending on the situation, the discussion with their clinician is key to understanding the results,” Dr Hong said. “Sometimes, the results without counseling can create extra stress and anxiety for patients. For instance, radiology reports can be very difficult for patients to interpret and translate.”
The American Medical Association (AMA) conveyed the same sentiment in a statement issued last year.6 The AMA expressed concern that, in implementing the Cures Act, the US Department of Health and Human Services (HHS) is pushing for the immediate release of data to patients without regard for physician involvement.
The AMA described reports of psychological harm to patients who received results showing cancer without physician support, as well as a patient who died by suicide after misinterpreting a diagnosis of kidney disease. The AMA called on the HHS to “update its guidance to explicitly allow physicians, using their professional judgment, to withhold some information if immediate or proactive release could cause a patient mental or emotional harm.”
Meanwhile, patients themselves have spoken out against withholding information.
“I’m extremely educated regarding my cancer and would prefer to have results ASAP,” Michele E. Collins wrote on Twitter. “Oftentimes, I was never notified of results until the in-person visit, which would sometimes be more than a week post-scan/blood test. Patients know what is best for THEM.”
“Opt in/opt out should be the compromise, not embargoing results,” Laura Esfeller tweeted. “It’s our data at the end of the day.”
Other Benefits and Detriments of Patient Portals
In studies, cancer patients and survivors have reported that patient portals allow for more patient-centered communication, help patients better prepare for visits with providers, increase rapport and engagement during visits, and improve their sense of self-advocacy.3,4
Patient portals can also improve coordination of care, Dr Hong noted. “With the complexity of care in oncology, having easier access to records can be very helpful when care gets fragmented across health systems,” he said.
On the other hand, Dr Hong pointed out that patient portals may increase physician burnout due to an increase in electronic messages, and patient portals may be vulnerable to security breaches that compromise personal data.7-9
Patient portals might also harm patients by delaying evaluation and treatment, according to David E. Gerber, MD, of the University of Texas Southwestern Medical Center in Dallas. Such delays may occur if patients use portals to disclose critical medical concerns related to their disease or side effects of cancer treatment, as these messages may not be viewed right away, he said.
This article originally appeared on Cancer Therapy Advisor
Pho K, Lu R, Gates S, Xie Y, Lee SJC, Gerber DE. Characteristics of patients using patient portals in oncology. JAMA Oncol. 2018;4(3):416-418. doi:10.1001/jamaoncol.2017.5257
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6. Preventing patient harm. American Medical Association. Published 2022. Accessed February 8, 2023.
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8. Steitz BD, Sulieman L, Wright A, Rosenbloom ST. Association of immediate release of test results to patients with implications for clinical workflow. JAMA Netw Open. 2021;4(10):e2129553. doi:10.1001/jamanetworkopen.2021.29553
9. Adler-Milstein J, Zhao W, Willard-Grace R, Knox M, Grumbach K. Electronic health records and burnout: Time spent on the electronic health record after hours and message volume associated with exhaustion but not with cynicism among primary care clinicians. J Am Med Inform Assoc. 2020;27(4):531-538. doi:10.1093/jamia/ocz220
10. Sinha S, Garriga M, Naik N, et al. Disparities in electronic health record patient portal enrollment among oncology patients. JAMA Oncol. 2021;7(6):935-937. doi:10.1001/jamaoncol.2021.0540
11. Santos AD, Caine V, Robson PJ, Watson L, Easaw JC, Petrovskaya O. Oncology patients’ experiences with novel electronic patient portals to support care and treatment: Qualitative study with early users and nonusers of portals in Alberta, Canada. JMIR Cancer. 2021;7(4):e32609. doi:10.2196/32609
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