Consortium of Advocacy Groups, Professional Societies, and Industry Develops Consistent Language for Cancer Precision Medicine Testing

Consortium of Advocacy Groups, Professional Societies, and Industry Develops Consistent Language for Cancer Precision Medicine Testing

Patient Advocacy
Apr 21, 2021
Jennifer Byrne
Doctor and Patient

In recent years, precision medicine has begun to play an increasingly important role in cancer care. Advanced diagnostic testing, including testing for somatic mutations, non-genomic biomarkers, and germline mutations, is likely to be involved to some degree in comprehensive treatment for most cancers.

Despite the relevance of this type of testing as a major component of cancer care, the public, including patients receiving a new cancer diagnosis, largely lacks familiarity with this complex science. In particular, the terminology used to categorize and discuss the type testing that leads to a patient accessing the promise of precision medicine has not been uniform across cancer treatment centers and cancer types. Because patients often first encounter these terms at diagnosis, when they are likely to already be confused and overwhelmed, a group of stakeholders from across the cancer care community has come together to clarify this language and encourage consistent adoption of the recommended terms for patient communication.

“We recognized that, as a patient advocacy community that communicates with patients, we were using different terms to talk to patients about precision medicine,” Nikki Martin, director of precision medicine initiatives at LUNGevity Foundation, said in an interview with the IASLC Lung Cancer News. “We wanted to address this disparity by agreeing on common language. After discussing this as a larger consortium of advocacy groups, several societies and industry partners expressed an interest in joining the conversation.”

The result was a collaboration of 41 advocacy organizations, trade associations, and industry partners called the Consistent Testing Terminology Working Group. The group produced a white paper designed specifically to clarify and standardize testing terminology. According to Ms. Martin, the use of uniform language in discussing testing for tumor characteristics and inherited mutations will enable patients to have a better understanding of their disease and its treatment.

“After the patient hears and sees the same terms about testing in multiple places, these terms will start to register in their mind,” Ms. Martin said. “Things will start to make sense, and so when they go to speak to their doctors or nurses about testing, everyone will be using the same words. The patients understand what’s being discussed. It creates a more empowered patient.”

“Umbrella Terms”

The Working Group began by identifying 33 different terms being used with varying degrees of consistency in patient education and communication about testing for molecular and non- genomic (acquired) characteristics in the cancer and testing for germline genetic (inherited) mutations. Ms. Martin said the Working Group recognized the need to organize these into broad “umbrella terms” representing different types of testing in precision medicine.

“We needed to have one term that would describe testing for somatic or acquired mutations and other types of biomarkers, such as PD-L1,” Ms. Martin said. “We chose ‘biomarker testing’ as the umbrella term for this.”

Likewise, the Working Group identified the need for umbrella terms to describe genetic testing for germline mutations. This led to two additional terms: “genetic testing for an inherited mutation” and “genetic testing for inherited cancer risk.”

“For a patient, it is helpful to know whether they fall into the biomarker testing category or the genetic testing category,” Ms. Martin said. “In some cases, they might fall into both categories.”

The conversations that providers have with patients about testing varies by cancer type. In lung cancer, for example, a patient with NSCLC would learn about biomarker testing for multiple biomarkers at one time. The provider might explain the list of biomarkers they will look for to provide further clarification.

“For other cancers, the explanation a provider would give a patient might be completely different than for lung cancer,” Ms. Martin said, “but what we’re doing is aligning the type of language that patients are hearing so that it’s consistent. We’re trying to get away from them sometimes hearing ‘genomic testing’ or sometimes ‘molecular profiling’ or ‘genotyping.’ Let’s just use one general term, ‘biomarker testing,’ and have the explanation of what that means differ based on the cancer type.”

Ms. Martin said several organizations within the Working Group have begun aligning their marketing and educational materials to utilize these terms. Some companies that were not originally involved with the effort have also incorporated the terminology into their materials. The Working Group has created content, including slides and other educational tools, that members and other allies and supports can use when advocating for consistent common testing terms.

“We need to be evangelistic about this,” she said. “The next step is for us to really own this message and convey it to any stakeholder in the cancer space. We can all be a voice for simplifying the language that patients newly diagnosed with cancer are hearing about this crucial step in their care.”

Additional information about consistency in language for cancer precision medicine testing can be found at www.commoncancertestingterms.org.

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About the Authors

Jennifer Byrne