Episode 70: Lung Cancer Screening, Stigma, and Science
In this episode we speak with Bellinda King-Kallimanis, PhD, an expert in oncology research and patient advocacy. Bellinda shares her diverse experience in the field, from academia to the FDA and now her role at LUNGevity Foundation. The conversation covers various aspects of lung cancer, including screening procedures, risk factors, and common misconceptions. Bellinda emphasizes the importance of early detection and addresses the stigma associated with lung cancer. We also delve into the Patient-Centered Outcomes Research Institute (PCORI) and a study comparing the impact of using different types of material to communicate screening information to patients. The episode also includes a rapid-fire Q&A section, where Bellinda provides concise explanations of key terms and concepts related to lung cancer.
This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Robert J. Volk, PhD.
Key Highlights:
- Lung cancer screening compliance is strikingly low at 5-6%, despite high risk for those with tobacco history, and additional requirements may further complicate the process.
- Stigma surrounding lung cancer, primarily due to its association with smoking, can deter people from seeking screening or discussing their health history, despite the fact that people with no tobacco history or people who have not smoked can also develop the disease.
- Patient involvement in research, through initiatives like citizen science programs, and improved communication of complex information are crucial for advancing lung cancer care and understanding.
About our guest:
Dr. Bellinda King-Kallimanis is Senior Director of Patient-Focused Research at LUNGevity Foundation. In her work at LUNGevity she aims to ensure that patient and caregiver voices are incorporated in decision making across a wide variety of stakeholders and has built a Citizen Scientist program to aid this. Prior to joining LUNGevity, she worked at the US Food and Drug Administration Oncology Center of Excellence on the Patient Focused Drug Development team. There, she worked on the development and launch of Project Patient Voice, a resource for patients and caregivers along with their healthcare providers to look at patient-reported symptom data collected from cancer clinical trials.
Bellinda also has experience in industry and academia and has published over 70 peer-reviewed papers. She received her Bachelor of Social Science and Master of Science in applied statistics from Swinburne University of Technology in Melbourne, Australia, and her PhD in psychometrics from the Academic Medical Center in Amsterdam, Netherlands.
Key Moments:
At 4:19 “It's not to say that being in the community [hospital] is a bad thing. It's just that with all the rapid changes that we've seen in some of these different types of lung cancer, lung being one, breast cancer being another, that it's how do you keep up with it if you're a community oncologist? It's really difficult… If you're at a comprehensive center, now it does depend a little bit, but you will be seeing most likely a specialist in breast, a specialist in colon, and you may even be seeing someone who's a specialist if you have a specific oncogene driven type of cancer. You may be seeing one of those specialists especially at a large academic center where there's people who just really hone in on some of these very specific types of rarer cancers, because the treatment plans for those are quite complex, and so that's sort of the difference that you'd be looking at, but not everybody can get to a large academic center.”
At 15:18 “So the criteria for those who are curious… for other [cancers] you hit an age and now you're eligible to get screened for any other type of cancer. For lung [cancer], there's also an age. It is between 50 and 80 years. In addition, you have to have a 20-pack year history, so that would be like smoking one packet of cigarettes each day for 20 years. If you smoke, say, for example, two packets of cigarettes a day, you could reach that threshold in 10 years. Also, you have to either be currently smoking cigarettes or quit less than 15 years ago. Those are the requirements, which make it pretty challenging, actually, I think, for people to get screened. When we look at the screening rates of those who are eligible, for lung, we see depends on the state, but nationally, 5 to 6% of people who are eligible for lung cancer screening get screened, compared to around 70-ish percent, give or take depending on the cancer type, for other cancer types. So we have much higher screening for other cancers than we do for lung [cancer] and it's challenged by the pack year calculations, I think because it's difficult to get an accurate history in that humans are inconsistent.”
At 17:41 “So about 80% of people who have lung cancer will have a tobacco history compared to 20% who don't have a tobacco history. And we don't fully understand the drivers of that for those. Because there are people who have a tobacco history who do not get lung cancer despite meeting the criteria for screening, meaning they do have an elevated risk. We also don't fully understand how people who don't have a tobacco history end up with lung cancer. Now there are plenty of exposures that we are aware of, like radon, asbestos, other environmental polluters, but how much exposure and when, and family history also tying into this little bit, does this matter? We just don't have very good answers for that right now. So the screening criteria is focused on those with the greatest risk.”
At 38:39 “I've taken it on to try to improve my communication as a researcher, because we spend so many years reading complex materials that you just start talking that way. It does not resonate with my family. They'll be like, what are you talking about? Who do you think you are? So if we really want to be able to talk to people and connect the work we do, then we have to be able to talk about it in much simpler terms. I really do think it's so important for us all to work on our abilities to make sure that we are speaking to each other versus, I've been in plenty of conversations where people are not speaking, they're just speaking around each other because there's a gap in the understanding and healthcare is already like very complex and cancer is really scary. So,just being aware of not talking in acronyms all the time.”
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Youtube Timeline:
0:00-10:06 About Bellinda’s Connection to Lung Cancer
10:07-13:36 PCORI Study on tobacco quit-line to lung cancer screening pipeline
13:37-23:32 The complexities of lung cancer screening, lung cancer risk factors, etc.
23:33-38:20 Rapid fire on lung cancer terms, general oncology terminology, and resources
38:21-40:27 Final takeaways as a researcher and member of the cancer community
40:28-41:29 Outro and disclaimer
Youtube Tags:
Manta Cares, lung cancer, surgery, diagnosis, early-stage, small cell lung cancer, cancer sucks, lung cancer awareness, smokers, tobacco history, smoking history