Demystifying pathology reports for patients
Donald S. Karcher, MD
December 2024—Maybe you’ve had this experience: A patient calls, scared to death. They can’t reach their doctor and they can’t make sense of their pathology report. What they want to know is simple: What does it mean for my health? Now that pathology reports and lab results are going to many patients at the same time they’re released to ordering physicians, we pathologists have a new audience to keep in mind. It’s a major change in who’s reading our reports and how familiar they are with the terminology we use. (Let’s face it: Our reports read like Greek even to our fellow physicians. They must be downright mystifying to patients.)
This has become deeply personal for me. Right now my daughter is being treated for recurrent breast cancer, and I worry about how she might handle some of the pathology reports she receives. She has given me access to her patient portal and asked that I read her reports first and translate them for her, providing appropriate context and replacing technical terms with language she understands. Without that help, it could be an emotional roller coaster if she had to find out by Googling keywords what diagnosis had been made and there was no one around to support her.
For years now, I’ve been interested in the idea of making pathology reports friendlier for patients. 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.
As you might expect, the CAP saw this trend coming and has already been conducting studies to understand what patients want and how we pathologists can help. These efforts have already led to ideas for new resources that the CAP might be able to develop for members to streamline the process for all of us. This is still a work in progress, but I want to give you an update on what we’ve learned so far.
The grant-funded CAP studies have been led by Diana Cardona, MD, MBA, who serves on our Board of Governors and is vice chair of our Council on Government and Professional Affairs. The first project evaluated patients’ impression of their current pathology reports through a survey and in-depth interviews. Two things jumped out from that study. First, not a single one of the participating patients knew they could have spoken to a pathologist to learn more, but they said they would gladly have taken that opportunity if they had known. Ensuring that patients have access to the pathologists overseeing their cases should be a priority for all of us. Second—and this one was a real surprise—patients did not want their reports rewritten in plain English. They want to learn the actual medical terminology so they can have more meaningful conversations with their care team. What they’re asking for is the context to understand it.
Subsequent focus groups allowed us to ask patients about several different possible styles of pathology reports. By far the most popular choice was a report that included all of the standard content, along with a one-line summary at the beginning of each section written in simple language. Based on feedback from those interactions, we held another focus group, this time using that most popular report style and also providing a glossary of key terms and a list of resources that could help people learn more about their diagnosis. This approach got rave reviews from patients, who said they felt better prepared to go back and have discussions with their care teams.
Another grant-funded project gave us the opportunity to check in with other stakeholders. Could these proposed changes have a negative impact? We spoke with folks in other specialties (radiology, surgery, primary care, oncology, etc.) and the response was unanimous. They supported these enhancements; they said they would likely help more than just patients. But they did have concerns about the potential burden on pathologists.
That’s why a working group of CAP members is already talking about how the CAP could develop materials that pathologists could easily plug into their reports—for example, glossaries and resource lists designed for specific clinical needs. We still have to decide how to move forward, but I’m eager for the development of tools that can help us support our patients in a valuable new way—and help those patients better understand the important role we play in their care.
Dr. Karcher welcomes communication from CAP members. Write to him at president@cap.org.