On July 7, a working group of 41 prestigious patient advocacy organizations, professional societies, pharmaceutical and diagnostic companies, and laboratories provided recommendations to fellow healthcare officials for the adoption of consistent, plain language terms for biomarker and genetic testing. The goal of the research is to help eliminate patient confusion about precision testing terminology in oncology.
The working group was assembled in April 2019 by the LUNGevity Foundation following the Pan Tumor Precision Medicine & Biomarker Testing Roundtable in March. The group of experts identified that although biomarkers and genetic testing are useful tools for doctors and patients to evaluate for specific driver mutations, multiple gene alterations, and non-genomic biomarkers, there is a discrepancy in how many eligible patients are receiving these crucial tests. Due, in part, to suboptimal testing practices, working group members attribute the lack of testing to confusion about testing purposes, testing types and the timing of results in relation to the start of therapy. Members identified confusing language and terminology as the crux of this issue.
To optimize cancer management, working group members aim to develop consistent testing terminology, improve communication, encourage shared decision making between patients and medical personnel and support value-based care.
“What I’m really hoping to do with this work is kind of elevate everybody, patients, primary care providers, even those of us mired in this work, and just elevate all of us to that same playing field so our conversations about testing and informed consent can be […] more nuanced or productive,” says Christie Jett, a genetic oncology counselor in the Valley Health System.
Jett noticed that many of the patients referred to her by their primary care doctors are often confused about which biomarker or genetic tests they need, in addition to misunderstanding the test results they already have.
“As an oncology genetic counselor, I frequently encounter patients being referred to me by their provider, but when I speak to that patient, they tell me, ‘Well, I’ve already had genetic testing’ or ‘My doctor said my cancer wasn’t genetic, so I don’t need this testing,’” she shares. “Sometimes, patients are either looking at their tumor pathology results and believing that those are genetic tests.”
During their analysis, the working group identified 33 terms related to biomarker, genetic and genomic testing. To better serve patients’ needs and to eliminate excessive term usage, the working group recommends that healthcare professionals instead use the terms “biomarker testing,” “genetic testing for an inherited mutation” and “genetic testing for inherited cancer risk.”
Dr. Andrea Miyahira, director of research at the Prostate Cancer Foundation, understands the urgent need for concise testing terminology. “We recently learned that about 12 to 17% of patients with advanced prostate cancer have inherited cancer with mutations that likely cause their cancer, and national guidelines now recommend germline genetic testing for inherited cancer risk genes to be considered for many patients with prostate cancer including high risk and advanced prostate cancer,” she says.
Considering these new guidelines, the need for consistent testing terminology is becoming increasingly important. Miyahira adds that “even more recently, several new treatments have been approved for advanced prostate cancer patients who have certain mutations, and they would need to undergo biomarker testing to determine if they are patients that are eligible or not using precision medicine.”
Implementing these changes in testing terminology will take time as more organizations outside of the working group will need to reevaluate their testing terminology. In the interim, Jett encourages patients to continue doing as much research as they can before appointments to cut down on confusion. “Bring paper copies,” she advises. “You can be the most knowledgeable patient out there, and you’re not going to remember every piece of information from a 10-page report, let alone if you’ve had 10 of those over the course of your cancer treatment.” Jett encourages patients to bring testing documentation to their appointments, particularly when visiting a new provider, to avoid misunderstandings about which tests they’ve had or are eligible for.
Miyahira encourages patients to ask their doctors whether biomarker testing or genetic testing for an inherited mutation applies to them. The Prostate Cancer Foundation also offers a cancer patient guide on its website to help patients establish higher standards of care and communication with their doctors.
Although the purpose of this collaboration between the working group and LUNGevity is to address the issue of consistent terminology in precision medicine for oncology patients, Jett and Miyahira agree that there is a need for consistent terminology across the healthcare spectrum.
“I think there’s a lot of confusion out there on probably many different disease fronts or many different types of medical fronts,” says Miyahira. “I think a better public understanding of different types of tests and what they mean is critical in all areas of healthcare and very important for global public health.”
Testing solid tissue, body fluid, and blood for these biomarkers and genetic predispositions ushered in a new era of precision medicine in the fight against cancer. With the hope that patients will continue to take advantage of these vital tests, the working group is committed to taking the necessary steps to usher in a new era of easy-to-understand testing terminology.
To learn more, visit https://www.commoncancertestingterms.org
