When it comes to precision medicine, the terminology can be confusing. Patients (and even providers) often mix up terms and use inconsistent language, making this important concept incredibly difficult to understand. According to Claire Saxton, vice president, Patient Experience at the Cancer Support Community (CSC), developing patient-friendly, consistent terminology is crucial if patients are meant to understand the complexities of precision medicine.
At the AONN+ 12th Annual Navigation & Survivorship Conference in November 2021, Ms Saxton explained how the CSC worked to develop the Precision Medicine Plain Language Lexicon: a set of plain-language terms and definitions that help explain precision medicine, biomarker testing, and genetic testing to patients, caregivers, and the general public.
Introduction to the CSC
The mission of the CSC is “ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community.” It has local cancer support communities in about 50 US cities and 5 international locations, and in these communities, people can access support, education, and wellness services.
According to Ms Saxton, these in-person service centers—combined with healthcare/hospital partnerships and satellite locations—mean that CSC’s support and navigation services are available at 175 locations nationwide, reporting 1 million visits a year. To accomplish their mission, CSC relies on 3 pillars: research, direct services, and advocacy.
Why Do Patients and Caregivers Need to Know About Precision Medicine?
“What we know is that patients and caregivers are overwhelmed and confused,” she explained. “And the way that healthcare providers talk about precision medicine varies significantly from provider to provider.” Additionally, the level of detail discussed is often determined by the questions that the patient asks.
So helping to empower patients with knowledge of precision medicine—so that they can participate in shared decision-making with their healthcare team—is critically important to helping them receive appropriate testing and optimal treatment.
The Increasing Complexity of Cancer Care
According to Ms Saxton, the initiative to develop a patient-friendly glossary of precision medicine terms and definitions began because a common sentiment was being voiced among patients—“it felt like I had to get a PhD in cancer in order to understand what was going on.”
She noted that this sentiment was particularly strong among patients with cancer types for which biomarker testing and precision medicine have really taken off.
“The complexity of what patients and caregivers need to know has increased significantly in the last 5 years or so,” she said. “And so has the confusion level.”
It has undoubtedly become more important for patients and caregivers to understand precision medicine concepts, particularly because for many patients, undergoing biomarker testing can show what treatments might work best for them. However, at the point at which they would need that biomarker testing (near the time of diagnosis), patients and their caregivers are especially overwhelmed.
“So we heard loud and clear that we needed to talk about this in easy, plain language,” she said. “So when we went to update our Frankly Speaking About Cancer: Precision Medicine education program, we knew we needed to start at the very beginning.”
Developing the Lexicon
First, she and her team came up with a list of concepts that needed to be explained. With the help of experts, they defined those concepts, then used feedback from patients and caregivers (through focus groups and discussion boards) to make sure the definitions were easy to understand. These terms and definitions then became their Precision Medicine Plain Language Lexicon.
This lexicon is not meant only for use in materials developed by the CSC but also as a free resource for providers, oncology professional associations, industry partners, and patient advocacy organizations who are having these conversations with patients.
“Our goal is to increase communication between patients, caregivers, and their care teams, and for all of us to be on the same page. So CSC is sharing this lexicon; we’re giving it away, and all are invited to use it,” she said. “We consider this to be a living document, and we’ll update it as cancer care changes and as we receive more feedback.”
The Precision Medicine Plain Language Lexicon is available at www.CancerSupportCommunity.org/PMPlainLanguage.
Qualitative Research Reveals: People Are Confused
To develop the lexicon, patients and caregivers were asked questions about whether they had heard of specific terms like “precision medicine,” “genomic,” “genetic,” or “targeted therapy.”
If they had heard of these terms, they were then asked to provide unaided responses further explaining these “familiar” concepts so that the research team could gauge how well these terms were understood. Word clouds from discussion boards served to further identify where definitions needed editing for clarity.
The results showed that “patients and caregivers are confused.” Some of the important takeaways included:
- While participants are excited and hopeful about precision medicine and think that they know what it is, few patients and caregivers could clearly describe “precision medicine”
- Over and over again, the terms “genetic” and “genomic” were found to be too similar, causing a lot of confusion
“As a result, CSC now does not use the term ‘genomics’; we talk about testing the cancer for mutations,” she noted. “We don’t talk about genomic testing; we talk about biomarker testing.”
- Patients’ unaided descriptions of targeted therapy were often descriptions of radiation therapy
“That actually made us change how we talk about targeted therapy at CSC,” she said. “Now we only talk about targeted therapy ‘drugs,’ so that we’re clear about the fact that we’re talking about medicine, not radiation, when we’re talking about some of the newest kinds of cancer treatments out there.”
- Patients and caregivers are confused by the “alphabet soup” of biomarkers, specifically by terms that come across as jargon, like HER2, ALK, and EGFR. However, the researchers found that not using that jargon may require more words to explain:
- For example, telling a patient: “If you have a positive HER2 test result (HER2+), Herceptin is likely to work well for you,” is understandable
- But telling a patient that: “Herceptin targets HER2” is confusing jargon
Other Major Findings
Few patients and caregivers were familiar with the concept of “cancer subtype” and did not know the subtype of the cancer they were living with. Other findings stressed the importance of sequence when introducing terms: providing the most necessary and basic information at the beginning and holding off on layering additional terms and concepts right away.
“If we don’t clearly explain what a cancer subtype is at first, it’s harder to explain how precision medicine is a way of treating a cancer based on its subtype, and that targeted therapy drugs only work for particular cancer subtypes,” she said. “So sequencing really makes a difference.”
She pointed out one finding that she found surprising: patients and caregivers (and the general public) are comfortable with the terms “gene,” “genetic mutation,” and “inherited mutation.” She also pointed out one finding that was unsurprising: a lot of confusion exists around the term “liquid biopsy.”
Tips for Providers
In addition to using biomarker acronyms (alphabet soup) sparingly, Ms Saxton urges providers to focus on what the patient needs to know to be an active member of their healthcare team (keeping in mind that graphics, diagrams, and other visual aids can help to explain concepts and definitions more clearly).
Rather than talking about all of the things that a patient could test positive for up front, wait until biomarker testing is actually conducted, she said.
“Focus in on the test results that make a difference for that patient,” she advised. “It’s less important to explain everything than it is to make sure the patient gets what they need in order to understand their own journey, and what they need next.”
Finally, remember that this is a stressful time for patients and caregivers: testing is stressful, waiting on results is stressful, and no matter the results, this process can be scary, confusing, and disappointing. For example, some patients are scared to hear that their cancer has a specific mutation, whereas others find it scary that they don’t have a mutation and feel that no additional treatments can be offered to them.
“But in fact, what biomarker testing is showing is that there are treatments we know won’t work,” she said. “So it allows us to steer patients away from those, and towards one that we know will work best for their cancer.”