Jill Feldman Discusses Developing a Patient-Friendly Lung Cancer Lexicon

Jill Feldman, who serves as an advocate with the EGFR Resisters organization, joined Lung Cancers Today at the IASLC 2024 World Conference on Lung Cancer to discuss her presentation on developing a patient-friendly lung cancer lexicon.

“The problem that we saw was the language used when talking about research and science was really technical and very overwhelming for patients and families to understand,” she said.

Feldman emphasized that “the idea was not to change how researchers talk to each other,” but “rather, to empower patients and families to be a part of the conversation and to better understand the research.”

It’s important to understand how overwhelming and unclear the language surrounding lung cancer can be for patients, their loved ones, and their caregivers, Feldman explained.

“When you’re diagnosed with cancer, it’s like you are suddenly drop-kicked into a foreign country. You don’t know where you are. You don’t know the language, you don’t know the culture, the terrain is unfamiliar. You don’t have a map yet,” she said. “You need to figure out how to survive with the mountain lion chasing you as you are navigating a fragmented health care system and are simultaneously confronted with making difficult treatment decisions, knowing there’s no room for error, but struggling with whether the potential benefits will outweigh the potential risk factors and the impact it will have on you and your family.”

Due to this, Feldman and her colleagues discussed the need with a pharmaceutical company, which was “very receptive to changing the lexicon in how they talk about research, both internally and externally.”

Developing the patient-friendly lung cancer lexicon began with establishing the need for it and holding advisory boards involving oncology professionals, patients with lung cancer, and patient advocates, she explained. These discussions helped Feldman and colleagues identify a set of commonly used scientific terms surrounding lung cancer that were complex or noninclusive, and they suggested a set of alternative terms that were simplified and/or more inclusive. The lexicon includes a set of terms encompassing safety, efficacy, and other key areas.

For example, Feldman explained that the preferable term for “adverse event” in the patient-friendly lexicon is “side effect,” because it is a more clear and accessible term. She also explained that it’s important to recognize that the term “genetic mutation” “almost [has] a stigma to it.”

“Just like research and treatments have advanced, the language that we use needs to advance to be more inclusive to empower patients and also to be more compassionate and nonjudgmental,” she said.

Feldman concluded by explaining the hopes and goals associated with the patient-friendly lung cancer lexicon.

“The idea is to empower patients to understand the language, to be active participants,” she said. “The hope is that this will actually encourage others to do the same within their companies, within their institutions, and really think about what we’re saying, how we’re saying it, and the impact that it has on patients and families.”