Even the most educated, take-charge individuals may have a hard time deciphering the test results they can access after a doctor visit, two new studies suggest.
“The benefits of improving patient access to their own medical information are fairly clear: patient empowerment and engagement in their own health care, and an improved trust and sense of partnership with their healthcare provider,” Dr. Daniel Miller, an assistant professor of dermatology at the University of Minnesota in Minneapolis, told Reuters Health by email.
Both studies, however, also suggest that giving people online access to their own lab reports – in these studies, skin biopsy results – might come with risks that won’t be entirely clear until more people are getting their test results this way, said Miller, who wrote an editorial accompanying the studies in JAMA Dermatology.
“The concerns (the studies) raise include unnecessary confusion, worry and anxiety for patients, when they are left trying to interpret complex medical information on their own,” he said.
Clinicians in most fields of medicine, dermatology among them, are trying to find ways to effectively communicate with patients on their smartphones and online, and more patients say they want these convenient options, experts say. The trouble is, even as providers embrace new technology, they’ve struggled to shed the technical medical jargon that can make it hard for patients to understand what they’re reading.
Pathology reports for skin biopsies are just one example of this problem.
“Historically, dermatopathology reports have been crafted to speak to the medical expert who performed the biopsy, with the expectation that they will provide context and practical understanding when they then contact the patient,” Miller said. “Pathologists may need to change the manner in which they craft reports if this document will ultimately go straight to patients.”
One of the two studies surveyed 160 dermatologists about sharing pathology reports online. Overall, 6 in 10 thought this could improve patient understanding of their results and also increase doctor-patient communication.
However, 7 in 10 doctors thought reading reports online would worry patients. One in four also thought they would benefit from special training to alter how they write reports with patients in mind.
“The physicians who responded to our survey perceived that reading their pathology reports increased patient worry and confusion,” said the senior author of this study, Dr. Joann Elmore of the David Geffen School of Medicine at the University of California, Los Angeles.
“However, despite their concerns for potential negative effects, their overall perception of such access was positive,” Elmore said by email.
The second study surveyed 225 patients to see how well they understood the diagnosis after reading a pathology report online. Half of the participants said they used an online patient portal to access health records at least once a month, and another 19% checked weekly.
When researchers asked patients to answer a multiple-choice question about their diagnosis, however, only 12% circled the correct answer and almost half of them left it blank.
“Misunderstandings around pathology reports can definitely create anxiety for patients that may require additional conversations with their physician to resolve,” said senior author of the second study, Dr. Alice Watson MD, director of quality and safety for the dermatology department at Brigham and Women’s in Boston.
“Our practice is to provide follow-up to patient regarding all biopsy results, benign or malignant, by letter or phone, so the pathology report is not the only information the patient receives,” Watson said by email.