In the CAN-PREFER trial, OICR researchers are trialing accessible, patient-friendly reports from cancer biomarker testing.

You shouldn’t need a PhD to understand your own cancer.

Scientific advances are helping people with cancer live longer, but they are also changing how we talk about the disease. “Mutations” and “biomarkers” are becoming just as important to treatment planning as the stage or location of a tumour, and it’s making it harder for the average person to understand what it all means for their care.

Biomarker testing is one advancement that is now becoming commonplace. These tests look for genes, proteins or other substances in a patient’s tumour that can point to which treatment might work best against it. But look at a standard report from cancer biomarker testing and you’ll be confronted with medical jargon and unfamiliar acronyms like BRCA and TP53.

“Biomarker reports have become critical to a patient’s treatment decisions, but they are highly technical and often pretty opaque,” says Dr. Felix Beaudry, a Scientific Associate with OICR’s PanCuRx research program. “We want patients to be able to interpret these reports so they can be more active participants in their treatment planning.”

To tackle this problem, Beaudry has brought together a multidisciplinary team including OICR researchers, PanCuRx patient partners, and clinicians at Princess Margaret Cancer Centre’s McCain Centre for Pancreatic Cancer, Legresley Biliary Registry, and Schwartz Reisman Centre for Research Innovation in HPB. With a standardized template and curated explanations written with the help of specialized artificial intelligence tools, the reports explain test results in clear, action-oriented language focusing on potential treatment options and resources.

The reports are now being tested as part of the CAN-PREFER randomized control trial where patients will be asked to evaluate and provide feedback on the reports.

“We hope the reports can help start a conversation and give patients the right words and resources to understand implications of their test,” Beaudry says.

The idea for accessible biomarker reports came about a few years ago, when Beaudry and colleagues ran a study that found only half of patients who had biomarker testing understood the results of their report. Around the same time, he interviewed oncologists about biomarker reports as part of a different study, and some clinicians said they also found the reports hard to understand.

“They said the reports were dense and jargony — and these are the specialists,” Beaudry says.

To design the new patient-facing reports, Beaudry and PanCuRx Clinical Co-Lead Dr. Robert Grant engaged a broad range of stakeholders, including a team of patient partners like Neil Marr.

Marr’s wife Priscilla was diagnosed with cholangiocarcinoma in 2019, and he remembers when she received the report from her biomarker test.

“It was a struggle to understand those reports without having an advanced understanding of genetics,” he says.

Though Neil and Priscilla were grateful to have biomarker testing done, her test did not show any biomarkers that could influence her treatment. She ultimately passed away from cancer in 2021.

After a harrowing two years navigating the health system with his wife, Marr says that how medical information is conveyed is extremely important. Most medical documents are cold by their nature, so he encouraged the research team to infuse the patient-facing biomarker reports with a sense of optimism wherever possible.

“It’s important to do all we can to make the difficult experiences of patients and caregivers better,” Marr says.