For a patient who has undergone a scan or biopsy that might diagnose cancer or detect progression or recurrence, each hour and day before results arrive can feel eternal.
Online patient portals can offer swift access to findings, sometimes even before the ordering physician sees them. Some patient advocates have celebrated this development. But clicking on results without understanding their context can have unintended consequences for patients, including confusion and unnecessary distress.
Mark Lewis, a gastrointestinal oncologist at Intermountain Healthcare in Salt Lake City and a pancreatic cancer survivor, has seen the fallout. For instance, one of his patients, whose tumor had shrunk to a tenth of its previous size, read his report online but didn’t realize the radiologist switched measurements from centimeters to millimeters. The patient came into his office visit despondent, thinking his cancer had progressed.
“We’ve swung pretty quickly” from physicians having complete control of results to patients navigating them without guidance, Lewis says. While he supports transparency and shared decision-making, he wonders: “Have people thought through the full implications of having this sort of unfettered access to all of their results in real time?”
One study, published in the January 2019 issue of Radiology, asked individuals in the midst of testing to consider options for receiving information associated with a known or potential cancer diagnosis. Their responses showed patients don’t always prefer instantaneous answers—provided they don’t have to wait too long for a more complete conversation.
Researchers surveyed 418 outpatients at two Midwestern institutions undergoing imaging tests for a variety of purposes, both related and not related to cancer. Around a quarter of the participants had a known cancer diagnosis.
The researchers used a survey technique called conjoint analysis, which technology companies employ to do market research. “Instead of just giving someone a question … you give them a series of choices,” says Matthew Davenport, a radiologist at the University of Michigan in Ann Arbor and senior author of the study.
Trained coordinators administered the survey to participants immediately after an imaging test, making the response rate high (nearly 91%) and the scenarios not entirely hypothetical. The researchers presented patients with 12 pairs of scenarios for receiving results and asked them to choose which they would prefer. For example, in one case they were asked if they would prefer the results three days after the test via the portal—before the doctor has seen them—or 14 days later, in the doctor’s office.
The results paint a nuanced picture of patients’ wishes. If results were delivered promptly, patients would prefer to hear them from their doctor instead of through an online portal. However, for each day they’d have to wait to talk to their doctor, that preference decreased. If the delay would be more than six days for an office visit or 11 days for a phone call, the balance tipped, and gains in speed of accessing results immediately through a portal outweighed the downsides of seeing them unfiltered.
The results surprised Davenport; he’d assumed, in a medical system moving away from a model in which doctors always know best, that patients would welcome additional access and autonomy.
But many seemed to understand the risk of scenarios like the one Lewis’ patient encountered. Radiology and pathology reports aren’t written with a patient audience in mind and may contain confusing or misleading language. Some even include errors. Physicians preparing reports often dictate into a microphone, which can lead to incorrect transcriptions. Or technical glitches, such as a result posted to the wrong file, can occur.
Even when radiology and pathology reports are accurate, ordering physicians may need time to process them and come up with a recommended treatment plan. In the days between receiving test results and discussing them with a patient, Lewis might call the radiologist or pathologist for clarification, order a follow-up test or even discuss a challenging case at a multidisciplinary meeting of specialists.
Additional research could further illuminate preferences among patients with different diagnoses or visiting specific types of specialists, Davenport says. Lewis, who was not involved in the current study, plans to conduct research within his small medical oncology clinic, where he hopes to study how patient desires change over time.
In the meantime, health care institutions could use these results to guide portal policies. “Maybe immediacy is actually not what we should hope for; maybe what we should hope for is the most accurate results being processed in the proper time frame,” Lewis says. Other options include releasing results after a set period of time or allowing patients or physicians to individually decide how and when results should be delivered. The key is having a clear process and communicating it to patients, Davenport says.
Patients, meanwhile, might want to think through their preferences, both Davenport and Lewis advise. When visiting a new doctor, they could ask questions about what’s visible on the portal and the physician’s personal philosophy about delivering news. Ideally, dialogue like this would build trust and understanding within the therapeutic relationship. “The portal should not be the be-all, end-all,” Lewis says. “It should be an instrument that improves patient-physician communication rather than hindering or eroding it.”
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