By Beth W. Orenstein
Vol. 20 No. 7 P. 20
When and how should patients see their radiology reports?
Within a very short timeframe after women undergo screening mammograms, radiologists send letters explaining the findings. “It’s not a report in the traditional sense, but at least it gives the patient who just had a mammogram a sense of what’s going on, in broad lay language,” says Tessa S. Cook, MD, PhD, CIIP, an assistant professor of radiology at the Perelman School of Medicine at the University of Pennsylvania in Philadelphia, and a member of Radiology Today’s Editorial Advisory Board. The letters range from “everything is completely normal” to “there are some findings that require more imaging.”
Could these letters or similar reports be what’s coming for patients who receive imaging for any reason and not just mammography? There’s much debate these days among the provider and patient communities about how—and how much—medical information should be shared with patients.
A Matter of Context
There’s no debate over whether patients have a right to see their test results including imaging studies. “Patients are legally entitled to their medical information,” says Cree Gaskin, MD, a professor of radiology at the University of Virginia Health System. However, there has been a great deal of discussion about whether patients should see their reports/results before the requesting provider and in whose terms—the medical terms that radiologists use when reporting to colleagues or the lay language that patients are more likely to understand.
The discussions often start with whether patients even want to see their imaging studies. Cook finds that some do and some don’t. “It varies from patient to patient,” she says. “I’ve interacted with some patients who don’t want to know and others who want every gory detail.”
What the imaging study is for—a routine screening or determining the best treatment for cancer, for example—can also make a difference, Cook says. “Imaging for an acute injury such as a fracture or something that is going to be a chronic ongoing condition that they’re going to be managing are two different contexts. And some patients may want different information, depending on the context.”
Like Cook, Safwan Halabi, MD, a clinical associate professor of radiology at the Stanford University School of Medicine and medical director for radiology informatics at Stanford Children’s Health, finds “It’s all over the board.” Some patients and families, he says, “eat up anything you give them immediately, and others don’t want the details, they just want you to explain it to them. It’s not a one-size-fits-all.”
A Question of Timing
The next debate point is whether patients should be able to see their reports at the same time as the requesting provider. Some health systems give patients access to their imaging studies through their EHRs as soon as they are available. Others have built-in delays from when the radiologist signs off on the report to when patients can access it.
At the University of Pennsylvania, for example, “We have a 72-hour embargo before we release the radiology report. That gives the provider a chance to look at the results and reach out to patients with abnormal results, before the patient sees that radiology report, or prepare for calls from patients wanting more information or an explanation of what it all means,” says Hanna M. Zafar, MD, an associate professor of radiology at Penn.
Although this system works well at Penn, Zafar believes each health system has to determine what works best for the local practice patterns and culture of the health system, referring providers, and patients. “What works in one health system setting is not always transferrable to other practices and health systems,” she says.
Kevin W. McEnery, MD, director of innovation in imaging informatics and a professor of radiology at the University of Texas MD Anderson Cancer Center in Houston, agrees that the radiology community is still searching for a consensus on which is best—immediate or delayed patient access. “Is it better for patients to read their report on a website at 2 am on a Friday night or wait a few days until they’ve spoken with their doctor?” The answer to this question isn’t clear, yet, he says.
McEnery says some radiologists fear that if they release their reports directly to patients and the requesting providers at the same time, they will be inundated with patients calling for explanations of the results. However, McEnery says he hasn’t found that to be the case. “I’ve really only had a handful of patients call, mostly wanting clarifications of their history because I wasn’t specific enough,” he says. “And a very few called because they wanted the report corrected as to their medical history. It might have had the wrong date of an imaging study or something minor like that.”
Gaskin believes patients shouldn’t have to wait for their completed results. “These results may be needed to make personal decisions or simply to eliminate the anxiety associated with waiting,” he says. Many imaging tests are reported within 24 hours, yet patients are typically forced to wait three to seven days more to get access to their information. “That’s unfair,” Gaskin says. “It’s your own very personal medical results, and data that you may have paid a lot of money for, yet you have to wait arbitrarily and sometimes jump through hoops to get it.”
One for All?
Arguably the biggest question in the debate is what form the patient report should take. Should it be the same as the one the requesting provider receives or written in patient-friendly terms? McEnery believes radiologists must write their reports so that requesting providers can use them to diagnose and treat patients to the best of their abilities. The words McEnery chooses to describe a patient’s hip fracture to his or her orthopedic surgeon could be different than those he would use to describe the same fracture to the patient him/herself. The orthopedic surgeon needs more information about the severity of the fracture and, if it requires surgery, how best to approach it, he says.
The same logic applies to tumors. “I need to describe where the margins are and where the vessels are because I want the surgeon to have the best understanding to enable the best outcome for the patient,” McEnery says. But the patient “might freak out when I describe in precise detail which vessel the tumor abuts.”
On the other hand, Gaskin believes that it’s unreasonably paternalistic for radiologists to believe that patients can’t handle their reports. Patients are legally entitled to their results, he notes. Those who want to see them should have access without “intentional delay and someone choosing what they should or should not know,” he says.
Gaskin believes that patients who want to be engaged in their own health care should be given the same important information as their doctors so they can contribute to the best decisions for that care. He also believes it serves as a security check when the patients view the same results as their providers. “There is less room for an error to creep in and have an important finding fall through the cracks,” he says.
Gaskin adds that there are some sensitive situations in which radiologists may want to refrain from sharing information in the reports with patients or their proxies, such as with suspected child abuse. The radiologists agree, however, that those situations are rare.
How would radiology reports be made patient-friendly if needed? Ideally, the reports would provide easy access to definitions of medical terms, Gaskin says. “The patient hovers over terms in the report and the explanations pop up or a link takes them to reputable websites for explanations. Additional information could pop up just like it does when they’re using an app such as TurboTax to do their taxes,” he says.
The reports could go further and ask patients for their feedback around these pop-ups: “Was this helpful?” If a fair number say no, Gaskin says, “we could look at that definition and make it better.” The technology to link reports to explanations of terms is currently available. “We’re just not doing it,” Gaskin says.
Penn has developed a system it named PORTER (Patient-Oriented Radiology Reporter) to augment radiology reports with lay language definitions. Cook is the lead author of a study published in Academic Radiology in September 2017 that looked at knee MRIs and patients’ access to them.
During a seven-month trial period, the researchers looked at 1,138 knee MRI exams. They found that 185 patients (16.3%) opened their report in the viewing portal. Of those, 76% (141) hovered over at least one term to see its definition. More than one-half of the patients (121, or 65%) viewed a mean of 27.5 terms per exam and spent an average of 3.5 minutes viewing those terms. When asked in a survey whether the definitions were helpful, 77% said yes.
The reports also included illustrations, and 91% of the patients surveyed said the illustrations were most helpful. The researchers, Cook says, concluded that a system that provides definitions and illustrations of medical and technical terms in radiology reports has the potential to improve patients’ understanding of their reports and diagnoses.
If radiologists are going to share their reports routinely with patients, most believe it’s their responsibility to couch them in terms that their patients can understand. However, taking time to do that is a huge problem. “We write our reports as a means to communicate with the team that is caring for the patient,” Cook says. “We use medical jargon and a lot of complex terminology. We make certain assumptions about who is reading the report. Were we to start creating patient reports, we would have to write them in a different way and, given the current workflow in radiology departments, that would be really challenging.”
Zafar says she’d favor including images, illustrations, or graphics charting disease progression to make reports visually appealing, succinct, and digestible to patients. “We know a picture is worth a thousand words,” she says. “Radiologists are developing innovative alternatives or adjuncts to traditional report text using visual aids to improve clarity for patients.” Zafar also says, however, that a significant challenge lies in creating these visually appealing radiology reports using information contained within existing structured text reports or facilitating the embedment of key images from PACS in imaging reports. It would be time consuming for radiologists to design and upload illustrations geared toward lay people for the more than 50,000 indications that may require imaging studies.
“We already have radiologists being transcriptionists,” Halabi adds. “Do we want them to be the ones converting it to a lay report, too?” It would require a great deal of their time and energy—things they cannot spare in today’s environment—the radiologists who were interviewed for this article agree.
Speaking the Same Language
Not only would reports need to be footnoted or annotated for the lay person, Zafar says, but they also would need to be translated into different languages. At the 2018 ACR Annual Conference on Quality and Safety in Boston, Zafar met Sabiha Raoof, MD, CMO and chairperson of radiology for Jamaica and Flushing Hospital Medical Center in Queens, New York. “She told me, in her county alone, patients speak more than 130 languages. That’s just her county. In order for patient-centered care to be inclusive, we need to make reports clear to those who speak English as their primary language as well as those who speak languages other than English as their primary language.”
Halabi says his health system serves a large Hispanic population, “and they shouldn’t be left out of understanding their reports because English isn’t their first language.”
Gaskin is convinced that the content of reports could be standardized, and a group of radiologists could participate in providing lay explanations for common vocabulary that is in them. These definitions would help “translate” the report for the patients. The reports also could be made more patient-friendly by adding interactive elements, he says.
“They could click on findings in the report and have the relevant images pop up with arrows pointing at their abnormalities,” Gaskin says. Patients would likely develop better understanding of their own conditions. Even better, Gaskin says, would be reports for patients that contain links so that if they had questions, they could shoot a secure e-mail to the radiologist: “I don’t understand what you mean by this … Could you please explain?”
Gaskin believes such patient-friendly reports might help radiologists attract business. “If you were a patient, and you could go to radiology practice A or radiology practice B, and practice A provided enhanced reports that communicated better, which would you choose?” he asks.
Zafar believes that improving patient access and understanding of radiology reports will require experimentation and flexibility. “What I feel very strongly about, regardless of how we accomplish it,” she says, “is that there is no cookie-cutter solution because what works for some patients and some providers will not work for others. And what works for some applications, such as mammography, may not work for others, such as lung cancer screening.” Just as different health systems have different policies on the release of their reports, Zafar says, different health systems are going to have to develop the solution that works best for them.
Halabi surmises that most physicians want to be transparent and provide everyone with the information they desire in the way they want it most. He adds, however, that “it has to be done in the right way,” and everyone has his or her definition of what the right way is.
— Beth W. Orenstein of Northampton, Pennsylvania, a freelance medical writer, is a regular contributor to Radiology Today.