Valerie Neff Newitt
March 2025—A study of oncology patients at the Medical College of Wisconsin sheds light on how they perceive the content and timing of pathology report review.
The study findings were gathered through in-person and telehealth interviews with patients with breast, endocrine, gastrointestinal, genitourinary, and thoracic malignancies. Medical student Amber Y. Bo, MD, in 2022 and 2023 conducted 230 interviews with patients who had a prior opportunity to review their reports in the patient portal (Bo AY, et al. Arch Pathol Lab Med. Published online Dec. 26, 2024. doi:10.5858/arpa.2024-0327-OA).
Of the 206 patients who answered decisively a question about the real or hypothetical helpfulness of pathology report review, 61.2 percent said reports were helpful, making it possible to prepare for future decisions, process the information pre-appointment, and have better discussions with their physicians. Fifteen percent said reports were not helpful because they were unable to understand the technical/medical language, and 7.3 percent attributed it to the report not adequately explaining the context of the patient’s cancer.
Eighty-five percent of patients (196 of 230) said they preferred the immediate release of pathology reports. And of the 172 patients who are portal users, 24 (14 percent) said they would choose to selectively opt out of immediate release of pathology reports, preferring instead to access the reports after their appointments.
“Findings revealed that patients and their families really appreciate using portals for the most part. However, they don’t work for everybody,” says Julie M. Jorns, MD, coauthor of the study and professor of pathology and director of surgical and breast pathology at the Medical College of Wisconsin.
Some patients felt especially troubled when they received reports on Fridays and were unable to reach the clinic during the weekend, she and her coauthors report. A few patients said they misinterpreted their reports to be more negative than they were owing to their unfamiliarity with the terminology, causing unnecessary stress.
“For some patients, there’s a real need for more flexibility” in portal use, Dr. Jorns says. “The portal is either on or off, meaning once a patient turns on and enters the portal, they can decide to ignore reports if they want to. That’s their decision. However, they can’t opt out or opt in for a certain selected, limited part of it. It’s all or nothing, and sometimes just knowing the report is there is too tempting for patients to ignore and they view something they don’t want to see.”
For this reason, some patients have chosen to not use the portal at all, she and her coauthors report, while others have turned off the email notifications for new test results. The authors write: “This ensures they will not receive a notification that would tempt them to open a pathology report that would incite anxiety. However, it also prevents them from benefiting from other features of the portal, such as scheduling and communication with the health care team.”
“Those are the folks,” Dr. Jorns tells CAP TODAY, “who say, ‘I would click yes for half of this and then click no for the reports.’” The lack of flexibility in portal use makes it unusable for purposes other than reading pathology or radiology reports, she says, “like making appointments or communicating with physicians. That’s a problem that more flexibility could address.”
It’s that flexibility that Dr. Jorns would like to pursue, now that the findings have been released. “I don’t know how easy or not it is to do,” she says of customization, “but I think it’s a question worth asking.”
Though most patients understood that the intent of pathology reports is to communicate at the physician level, many expressed a desire for access to a report written “in layman’s terms,” the authors write.
Reports are hard for patients to interpret unless they or someone in their family has medical knowledge, Dr. Jorns says. “This is one area that offers an opportunity for improvement.” Some pathology groups have worked on this, she says, as she and coauthors noted in their article, “but it isn’t universal. Only a minority of institutions have these types of resources for patients.”
Understanding pathology reports could be difficult even for medically adept people because medical knowledge is also specialty dependent, Dr. Jorns adds. “I think we could do a lot more,” she says, though she acknowledges the lack of reimbursement for the added work. “More universal guidelines for providing patients with useful information” would help, she says, “so we aren’t all in little pods trying to do the same thing.”
Authors of another study published in 2024 wrote that “patients cannot be part of the decision-making process if the pathology report is beyond their comprehension” (Steimetz E, et al. PLoS One. 2024;19[5]:e0301116). In a systematic exploration of the literature, these authors identified only five papers that met their criteria for addressing the importance of patient-centered or lay language use in pathology reporting.
“Although patients have instant access to their pathology reports, no framework or guidelines exist for generating reports with accessible language,” Steimetz, et al., conclude, adding, “Patient-Centered Pathology Reports should be a focus of future interventions to improve patient care.”
Steimetz and coauthors identified two themes that came from their review of the final sample of five papers. One is that “simple, non-medical language needs to be an essential part of a patient-centered report,” and such reports “have the potential to improve communications between providers and patients” and between providers and patients’ family members. Patients who received a patient-centered report, they found, were able to recall important information like stage and grade of their cancer.
“As a profession,” Dr. Jorns says, “we need to think about putting more value into the messages we give to patients who, in addition to clinicians, are now our audience.”
CAP president Donald S. Karcher, MD, agrees, writing in his December 2024 column in CAP TODAY: “With new guidelines requiring us to release most reports to patients and physicians simultaneously, it’s time to figure out how we can provide reports that equally serve our physician partners and our patients.”
The CAP’s own grant-funded survey- and interview-based studies found patients did not want their reports rewritten in plain English; they prefer instead to learn the medical terminology so they can have more meaningful conversations with their physicians. “What they’re asking for is the context to understand it,” Dr. Karcher wrote.
CAP-led focus groups explored possible report styles, and a CAP working group is now looking at materials that pathologists could use in their reports, such as glossaries and resource lists.
Dr. Jorns and her coauthors found that the top reason among 41 patients who cited reasons for not viewing reports via the portal was a lack of computer or internet access, which for 27 of the 41 meant no portal access.
“There are some who don’t even want to use the portal, and what do we do for those people?” she asks. “We try to meet them other ways—with printed reports, patient navigators. I’m sure there are people working on that question too.”
She identifies another group whose needs ought to be considered: patient caregivers. “During the interviews for our study, caregivers were often in the room with the patients. They may be the people who first read the patient’s pathology report. They are an entirely different group of individuals who are invested in patient care. Perhaps we should look at their needs individually as well.”
“Perhaps challenging,” she says of the possibility, “but a good area to study.”
Valerie Neff Newitt is a writer in Audubon, Pa.