Episode 70: Lung Cancer Screening, Stigma and Science

The Patient From Hell Podcast (00:00.831)
Hi everyone, this is Samira Daswani, the host of the podcast, The Patient From Hell. I have a very dear friend with us today. She's taught me so much about oncology. She's taught me so much about research and science. I can't wait for you to hear from her. Hi, Bellinda

Bellinda King-Kallimanis (00:18.924)
Hi Samira, very kind of you to say and it's always a pleasure working with you and talking with you.

The Patient From Hell Podcast (00:25.727)
Bellinda, you've seen oncology play out from so many different lenses. Can you maybe tell us some of those lenses and what brought you into it to begin with?

Bellinda King-Kallimanis (00:35.898)
Sure. So yes, I haven't really taken a linear path to my role at LUNGevity Foundation, which is now a patient, I'm at a patient advocacy group for lung cancer. But before that, I was at the FDA in the oncology center of excellence. acting as a drug reviewer, looking at patient focused drug development specifically. So information that came more directly from the patient than their clinical information, but integrating that into risk and

for new treatments. Then prior to that, I wasn't exclusively working in oncology. I was working for a consulting company to industry. In that role, sometimes I was working on oncology projects and sometimes I was working on other chronic health conditions. And prior to that, I was in academia, not in oncology at all, looking actually at aging. So

I've sort of taken a winding path to where I am today, but along the way I've learned a lot of different things and looked at things from different perspectives. So it keeps it interesting.

The Patient From Hell Podcast (01:46.236)
Would you mind telling us if you're open to it at all and any personal connection to oncology?

Bellinda King-Kallimanis (01:53.218)
Yes, so, besides from grandparents who I did see when I was in my early 20s, have one with a hematology and one with colon cancer. But more recently, my husband's mother died from lung cancer. And then shortly after, her brother, so my husband's uncle, also died from lung cancer. So lung cancer is very relevant and personal in our lives.

The Patient From Hell Podcast (02:22.195)
I'm so sorry to hear

Bellinda King-Kallimanis (02:24.472)
It's a difficult disease to get diagnosed with and for both of them, they both died within a year of diagnosis.

The Patient From Hell Podcast (02:35.218)
Can you tell us about what type of lung cancer they had?

Bellinda King-Kallimanis (02:38.54)
And both of them had non-small cell. Alex's mom had a mixed histology of adenocarcinoma and squamous cell. I don't know the exact histology of his uncle, but both ended up on platinum chemotherapy as their treatments. so my husband's mom and my mother-in-law, Mary, she didn't finish her chemotherapy. It actually took a while to get her diagnosed.

The first oncologist she saw did diagnose her with lung cancer, but misdiagnosed the subtype based on the next generation sequencing testing, actually, because she was at a community clinic and a lot of things have changed pretty rapidly in lung cancer. I guess he just didn't know those changes. And at the time I was working at FDA and I was on the phone listening to her

appointment where she was getting the information. And I didn't know as much about lung cancer and I was like, something's funny. That's not right. I don't know what. And luckily being at the FDA, was able to go around and ask a bunch of oncologists, what does this really mean? What do we do? And so then we were able to work to get her into Roswell Park, which is a comprehensive cancer center to see a thoracic specialist versus

being in the community. And it's not to say that being in the community 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. And in fairness, when I saw the report, it wasn't really that clear off the report what was going on.

And I think if you're a community oncologist, you have to rely on those reports to some degree, because you wouldn't be able to keep up with the literature and all of that for all the different types of cancers.

The Patient From Hell Podcast (04:43.755)
Can you talk a little bit about what is a community oncologist and what is a comprehensive cancer center? Just 101, what are they and why are they different?

Bellinda King-Kallimanis (04:53.56)
So in the community setting, and I don't know if there's like precise definitions, but broadly speaking, in a community setting, you would have an oncologist who's treating all the people who come and are referred to them regardless of diagnosis. 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, thoracic, and you may even be seeing someone who's a specialist if you have a specific oncogene driven

type of cancer, you may even be seeing one of those specialists at a, 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.

The Patient From Hell Podcast (05:47.947)
Interesting. I am taking notes for our rapid fire later. I think we're going to have a fun one. Just fair warning. Can you talk a little bit about what made you switch from FDA to nonprofits?

Bellinda King-Kallimanis (05:51.898)
Okay.

Bellinda King-Kallimanis (06:03.842)
It was a number of reasons, some of them personal, and some of them professional. In my role at FDA, I was working with a number of nonprofits and advocates, including in the breast space as well, and was really enjoying working with the groups I was working with, and then so when this job came up, and I had been working with LUNGevity Foundation as one of the groups, when one of

staff members reached out and said, do you know anybody who's looking for a job like this? I sort of then turned around and said, well, I might be interested. And so that was during 2020. So that was an interesting experience, but we did get there in the end. And it's been nearly four years that I've been in the advocacy space. And I still really enjoy

working with the patient community. We have a citizen science program that we ran a pilot of this last six months and we're looking to get PCORI funding to grow it so that we have more members of the community, so patients and their support systems, caregivers, learn a little bit about research by joining our research team and being hands on, like not just watching webinars, but really, you know, seeing how difficult it is

do research.

The Patient From Hell Podcast (07:33.968)
I don't think I could be a citizen scientist. I think I would have too many questions and then get really frustrated that we didn't have answers faster.

Bellinda King-Kallimanis (07:36.515)
Hahaha

Bellinda King-Kallimanis (07:43.491)
Yes, you would have a lot of questions, believe that, but I don't think you would be bad at it.

The Patient From Hell Podcast (07:51.811)
Maybe in a future date.

The Patient From Hell Podcast (07:56.303)
You mentioned PCORI. Can you tell us what it stands for? That actually could be a good segue into one of our many topics of the day, which is the PCORI paper that I know you reviewed.

Bellinda King-Kallimanis (08:08.516)
Yes, the Patient-Centered Outcomes Research Institute, I think you get so used to using the acronym, of course, then you're like, what are the actual letters stand for again? They fund work that is intended to be very patient-centered, and it's been evolving over the years, right? What does it mean to engage with patients? And of course,

I think in the beginning it was pretty tokenistic in that, we included a patient on our advisory board. But now we're talking really about co-creation and working together truly as part more partners. And so I think that that's been great to see because I I've definitely witnessed over the years just having those conversations with patients about like research aims, like –

reprioritization of what's really important to the community. Not that like what we had come up with perhaps as researchers was not of importance, but it wasn't the number one thing they wanted to have an answer to. And so all it just meant was like really rearranging like the priority of the research to make it much more relevant to the people who it's for, right? Like that's why we do research, I hope.

The Patient From Hell Podcast (09:28.287)
Okay, so that brings us straight into one of the research studies that is part of the PCORI funded.

The Patient From Hell Podcast (09:39.773)
is one of the many studies that we've had and spoken about on this podcast. I would love for you to talk about what was the study, what did you learn from it? And then I have a few follow-ups for you.

Bellinda King-Kallimanis (09:51.578)
Great. So this study, broadly speaking, was looking at a small intervention where people who called tobacco quit line. So it is a very activated group of people because they've already picked up the phone to try and get information on how to stop smoking cigarettes,

that has to be kept a little bit in mind. It's not a general population of anybody who would be eligible for lung cancer screening. And so they took people who had called that line and put them in one of two groups. So one of the groups was to receive an educational pamphlet on what it involves to get screened for lung cancer. And the other was to pre-watch a video,

as a sort of decision aid on the risks and benefits of undergoing a lung cancer screening. And then they sort of tracked people over the next six months, I believe it was, looking to see what their behaviors were. So did they then initiate a conversation with their healthcare provider? Did they schedule a low dose CT scan, which is how you get screened for lung cancer? And then did they follow all the way through and have that within that six months? Not to say some people might not have had

one later, but that's what the study focused on for their research project.

The Patient From Hell Podcast (11:16.884)
And what did they find?

Bellinda King-Kallimanis (11:18.422)
So interestingly, they didn't find a difference between the actual outcomes of behavior, which I thought was kind of interesting, right? Because I might have assumed that there might have been a difference. But at the end of the day, what they really just found was that those who watched the video versus those who received the pamphlet, the actual number of people who

went and got a low-dose CT scan within six months were very similar. So for example, it 57 people out of the 233 people who watched a video who got scanned and screened and 68, so that's not that many people, 11 people more out of the 232 who received the educational pamphlet. I did think it was interesting how they presented the numbers because they present

the number of people screened as a percentage of the number of people who made an appointment to get screened. I thought that was kind of, and this is where it gets difficult to present risk information, right? Or just data generally, right? Because what they chose to be as the denominator, so the number that you multiply anything by to get a percentage

can be shifted around to tell slightly different stories. And while it's not right or wrong, they do tell different stories. ultimately, when you look at those who had scheduled a CT scan, it's more like 80% of people who scheduled an appointment actually followed through and got their CT scan. So I thought it was an interesting

study and that it didn't actually shift outcomes, but people did feel more prepared for those conversations with their healthcare providers. So people who watched the video felt more prepared than those who just received the pamphlet. Yeah, which is important because actually with lung cancer screening, one of the requirements for centers of Medicaid and Medicare services to pay for the screening

Bellinda King-Kallimanis (13:28.608)
is that there is a shared decision making conversation between the person and their provider. So they sit down and have a conversation about risks, benefits, and what have you of going through a screening, which is not a requirement for any other type of cancer screening. So for breast, for prostate, for colon, once you XH that makes you eligible, then you just get sort of a referral and it's paid for through

Medicare and with lung cancer, it's a bit more complicated how people get screened. And this was controversial actually when added, when CMS (Centers for Medicare & Medicaid Services) went ahead and added this requirement and still remains to be controversial because CMS actually updated their requirements for payment of lung cancer screening a couple of years back. And there were people who said, no, take this out, but it has remained.

It's an interesting quirk of lung cancer screening, I'll put it that way.

The Patient From Hell Podcast (14:33.205)
So I have two questions for you on this. One is, can you just talk about the baseline screening criteria and the rates of compliance to screening in lung cancer? So question one. And then question two is, given that baseline, how do you then layer on top of that this requirement on doing a shared decision-making appointment on it?

Bellinda King-Kallimanis (15:03.49)
It's interesting. So the criteria for those who are curious about how you, it's not so the others, as I said, it's really you hit an age and now you're eligible to get screened for any other type of cancer. For lung, there's also an age. It is between 50 years 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. But if you smoke, say, for example, two packets of cigarettes a day, you could reach that threshold in 10 years. And then 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. Because 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. And it's challenged by the pack year calculations, I think, because

you know, it's difficult to get an accurate history on that humans are inconsistent, we're all inconsistent. So you know, this I think makes it difficult for physicians to collect sometimes this information. Plus like the stigma and shame that comes with now tobacco use. So people don't want to really talk about this a lot, they feel really uncomfortable. And you know, this is really an addiction issue and a big tobacco issue versus an individual's shaming

activity in my opinion. So it's a bit unfortunate. So that's kind of where we are with being eligible and the compliance and now I've already forgotten what the second part, oh the shared decision.

The Patient From Hell Podcast (17:10.699)
I'll come back. And how it affects the compliance. I, before you go, can I just make sure we communicate the following? It's another question for you. What percent of lung cancer is in smokers and non-smokers?

Bellinda King-Kallimanis (17:27.002)
So it's 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.

And 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? And I'm not sure.

we don't, I mean, we just don't have very good answers for that right now. So the screening criteria is focused on those with the greatest risk. And in some Asian countries, they are including now family history and opening that up a little bit more. But again, screening always comes with a risk that there's a false positive that then will lead you to have more testing done that has costs and also potentially negative outcomes.

The Patient From Hell Podcast (18:51.275)
OK, alright, let me ask you the question I wanted to talk about, which is the reason I was asking for the baseline rates is what if I heard you right, it's 80% of all individuals who have some tobacco history. Sorry, 80% of cancer, let me restate, 80% of lung cancer patients have a tobacco history, 20% do not.

Bellinda King-Kallimanis (19:13.22)
Yes.

The Patient From Hell Podcast (19:15.595)
Yet we're seeing compliance to lung cancer screening at 5 to 6% national average gross average. Whereas, pick your other flavor of cancer, IE breast, colorectal, looking at 7% compliance. So we're looking at a population where

it's a known risk. Screening is very low. And now we have inserted into that screening pathway in my very humble opinion, another hurdle.

Bellinda King-Kallimanis (19:52.762)
Yeah. Yeah, it takes time, right, to have a shared decision making conversation in an already tight clinic visit. So like, if you're having a clinic visit, chances are you're probably not just there to discuss screening, right? You're there to discuss maybe something else has prompted the visit, maybe you just turned 50 and now there's some other things that are, you know, but you're really there to talk about another chronic health condition that you might have. And so how do you fit

this in and that's why there were people when there was a revision and I forget if it was 21 or 22 where exactly the changes to the screening requirements were but it was recently ish that the people had commented on this that they wanted to see this piece removed and it's not that I think I mean I do think having giving people information to make good decisions is so important but when time is short what are you gonna do like what are gonna prioritize like

If you have diabetes, I need to get that under, and it's maybe not well controlled. I need to sort that problem out first and foremost. And I might push this to the side, right? Like, because I don't know how critical the conversation is, but you know, getting your diabetes under control or whatever other health condition that perhaps drove you to see your healthcare provider, that's probably what's going to be more critical.

The Patient From Hell Podcast (21:18.911)
What is amazing to me is I cannot believe we're sitting here today and I'm sitting and questioning whether or not a shared decision making tool should be included. It feels like an ethical, moral problem for me, which probably should not be. It feels very operational in its implications, but it does feel, there's this tension here of like operationally complex, morally, ethically right. And yet.

The result, is effectively what we should be looking at is it's not working.

Bellinda King-Kallimanis (21:56.046)
Right, and when we look, and I think with lung cancer, most lung cancers are diagnosed advanced or metastatic. So when I say advanced, locally, like advanced lymph node involvement, perhaps, or metastatic, which means that it has spread somewhere else, like the brain, which is not uncommon in lung cancer. So that means if you're diagnosed at those advanced stages, treatment becomes more complex than if we catch it at stage

one or two where it is still, it's really just the size of the tumor, it is still contained within the lung. so, you know, lung cancer does have that problem of the treatment becomes much more complex when you factor that piece in. So catching those cancers earlier is definitely a benefit. People do focus in on screenings potential to save lives. And I think that is important,

a big part of it is also catching it earlier, right? Because it is going to mean that you have, because lung cancer does recur, but it means that you have like that time, and that's much more difficult to know who's going to recur and when it will recur, right?

The Patient From Hell Podcast (23:18.539)
I think we should transition to our rapid fire. I'll tell you why, because in our, just in our like 20 minutes of conversation, I feel as though we've identified quite a few areas where I think it would benefit our listeners to give them a bit more definitions. If you're open to a rapid fire, that's what the name suggests. I'm gonna ask you a series of what, mostly what, not always what, mostly what questions. And we are looking for you to give us a short,

Bellinda King-Kallimanis (23:21.1)
Okay.

The Patient From Hell Podcast (23:48.519)
answer to the what question. And what we often do with this section is it's part of our main podcast, but we will often clip out individual question and answers because what we've learned from the community is they like these like short definitions of things that a lot of us in the community, we've forgotten. So, ready? Okay. What is low dose CT?

Bellinda King-Kallimanis (24:19.212)
It's kind of like an X-ray that takes pictures of your lungs. The radiation that you're exposed to is a little bit more than what you'd be exposed to in a mammogram. You don't have to take your clothes off. You can just lie in the machine.

The Patient From Hell Podcast (24:33.944)
All right. You're going to be so good at this, Bellinda. What is CMS?

Bellinda King-Kallimanis (24:41.06)
Centre for Medicaid and Medicare Services. So they're the ones that do Medicare, Medicaid and things like that.

The Patient From Hell Podcast (24:48.127)
What is PFDD?

Bellinda King-Kallimanis (24:50.554)
Patient-focused drug development. Do you want more of an explanation? So patient-focused drug development has come to be a term that is used in drug regulations to make sure that additional information is being collected directly from the patient about how they feel and go about their daily lives.

The Patient From Hell Podcast (25:16.967)
What is a thoracic oncologist?

Bellinda King-Kallimanis (25:21.082)
That is an oncologist that focuses on the thoracic area of your body. So it includes your lung, I'm not going to be able to say esophagus and that region. So they're really chest oriented versus a breast oncologist who's going to focus on breasts.

The Patient From Hell Podcast (25:41.801)
What is non-small cell lung cancer?

Bellinda King-Kallimanis (25:45.578)
It is the type of cell, it's a cell level information about your cancer. There is also small cell lung cancer and large cell. And it's when someone takes a biopsy and looks under the microscope to see what kind of cells are growing.

The Patient From Hell Podcast (26:05.141)
What is adenocarcinoma?

Bellinda King-Kallimanis (26:07.722)
Similar. It's again, we're breaking it down so that we can target treatment more and it is a type of cell that is growing within the lung cancer too and it helps target treatment better.

The Patient From Hell Podcast (26:19.871)
What is histology?

Bellinda King-Kallimanis (26:21.498)
That's a good question. I am not a biologist. So I do not know the difference exactly between the cells and then the histology.

The Patient From Hell Podcast (26:31.371)
Okay, what is next-generation sequencing?

Bellinda King-Kallimanis (26:34.65)
That is a test where if you have a diagnosis of lung cancer, and I'm just going to do a PSA, a public service announcement here, you should get your tumor tested with some sort of next generation sequencing to learn about what types of, again, cells, we refer to them as oncogenes, are in the lung cancer

The Patient From Hell Podcast (26:43.755)
through

Bellinda King-Kallimanis (27:01.914)
to again make your treatment more tailored to the type of lung cancer that you have. Because lung cancer is now not one or two diseases, but it is many, many, many, many, many subtypes. And there are now specific treatments that target not all, but some of those particular types of cells and how they behave in the cancer.

The Patient From Hell Podcast (27:23.861)
What is the difference between a smoker and someone with tobacco history?

Bellinda King-Kallimanis (27:28.492)
Nothing, it's about using language where we don't call people by their behaviors and so we don't refer to people as rich or poor often when we're talking about different groups and at LUNGevity we don't refer to people by behaviors either.

The Patient From Hell Podcast (27:45.023)
Can someone who has never smoked get lung cancer?

Bellinda King-Kallimanis (27:48.154)
Yes.

The Patient From Hell Podcast (27:50.613)
Can someone living with a smoker or someone with tobacco history get cancer?

Bellinda King-Kallimanis (27:57.294)
Yes.

The Patient From Hell Podcast (28:00.347)
What is lung cancer screening?

Bellinda King-Kallimanis (28:03.578)
So it is a type of cancer screening where you go have a conversation with your primary care doctor about whether you would meet the criteria to have it done for you. You can pay for it out of pocket, of course, if you wanted to. That is an option for some people. I'm assuming that that would work. But for most people, we're going to go through insurance because those things cost thousands of dollars and it's not available for us. so I have a chat about

what the criteria that have been set by these task forces who should be screened. And then you can go ahead and get that low dose CT scan

The Patient From Hell Podcast (28:44.767)
What are the risks for getting lung cancer?

Bellinda King-Kallimanis (28:49.39)
The risks factors for getting lung cancer. So tobacco, secondhand tobacco, radon, which actually comes from the earth. And so it depends on where you live, but then also not only where you live, whether you were, say, in a basement apartment versus on the 10th floor, where you work, things like that. Asbestos, which is in building products. And I only learned at longevity, but in the US, asbestos

until very recently was still allowed to be in building materials. I thought like many countries globally that it had been required to not be in building material like newly. So silica, so if you work with stone and cutting stone and breathing those sorts of things in that can impact lung cancer. There's a lot of risk factors.

The Patient From Hell Podcast (29:46.328)
It's a rabbit hole I have gone down. Don't recommend this place. That's why summaries exist.

Bellinda King-Kallimanis (29:49.594)
It is a rabbit hole.

Bellinda King-Kallimanis (29:56.122)
I have heard patients tell me that they went down the rabbit hole of looking. And I mean, the thing is the dose makes a poison, right? And that's what we don't really understand. Well, like a little bit of exposure to asbestos or radon is not probably going to give anybody like lead to a diagnosis of lung cancer, but it's how do those all combine in your family history? And then, you know, that's how you get a diagnosis.

The Patient From Hell Podcast (30:23.659)
Why should people who have a tobacco history get tested or screened for lung cancer?

Bellinda King-Kallimanis (30:30.616)
I mean, I understand that there is shame and guilt. I have talked to people who told me, well, I knew this was a product that causes lung cancer. So, you know, it was my fault. But tobacco companies made very deliberately a very addictive product and that leads to lung cancer among other things as well, not just lung cancer, but other chronic comorbid conditions. And so I feel like you

get - talk to have a conversation at least with your doctor because if it is caught earlier, the treatment situation you'll find yourself in will be an easier path than if it becomes metastatic and it is not a it's a really sort of difficult diagnosis when it's advanced like the reason my mother-in-law got diagnosed was because she had fluid on her lungs and felt like she was drowning. So

It's a very unpleasant situation to have diagnosed and she was diagnosed quite late stage. It had metastasized into a few different organs and so nobody wants to find themselves there. It's much better to get screened and find it earlier. And while, you know, any diagnosis of cancer, whenever it happens to be in the staging is terrifying, it is still just easier when it's earlier.

The Patient From Hell Podcast (31:52.533)
What percent of individuals with tobacco use end up getting lung cancer? Do we know?

Bellinda King-Kallimanis (31:59.674)
That's a good question. think it might be about 20%, but don't quote me on that. not 100 % sure. It's not, I mean, I feel like we pushed the narrative as a society that there is a direct, very strong correlation between smoking cigarettes and getting lung cancer to try to stop people from smoking as many cigarettes.

It's backfired, I think it's backfired a little bit in that it has added so many layers now of stigma and shame that people don't feel comfortable telling their physician about their tobacco history and use. Like I think a lot of people just would rather sweep it under the rug and feel like it's their individual problem and that they'll just, they know it's bad. They don't need someone else necessarily telling them that it's a bad thing to do.

The Patient From Hell Podcast (32:57.557)
What have you found to be the most common myths surrounding lung cancer?

Bellinda King-Kallimanis (33:05.274)
that I think that just the idea that it's in older people's only, like it's exclusively diagnosed in older adults and that is not true. Meanwhile the average age is 70, 71 -ish, so indeed it is more common. You know, I've met people in their mid 20s who have been diagnosed with lung cancer, so you can get a diagnosis in your 20s of lung cancer. And then just all the factors that influence

I don't think people understand how many exposures there are that can lead to a diagnosis of lung cancer. And as we face global climate change, whatever you want to call it, this is going to be an issue for all of us, right? As we breathe in more polluted air, what's that going to do for our lung health? Like that is critical. What is vaping going to do for our lung health? Like these are unknown questions right now, but

I don't imagine it's anything good.

The Patient From Hell Podcast (34:07.669)
What is the most memorable piece of advice you've heard from a lung cancer patient?

Bellinda King-Kallimanis (34:12.484)
Most memorable piece of advice.

you know, it's not so much advice, but it's really sometimes watching where there's two people who've been diagnosed and one more recently and one who's been living with lung cancer for 10 years. And just the hope that someone who's been recently diagnosed meeting someone who's been living with lung cancer for 10 years, like just that look that it comes up

that comes over them, it is really amazing to see and watch when you connect to people like that, because I think, you know, if you just look at the statistics, they don't look good. But there are folks in our community who have been living with this diagnosis for a long time, like 20 years even. you know, it does, that always sort of makes me very happy to see those connections being made with people.

The Patient From Hell Podcast (35:14.781)
What is a citizen scientist?

Bellinda King-Kallimanis (35:17.464)
So this is a term that gets used for a number of different projects where you invite members of the community to participate in science-based activities. so for our lung cancer citizen science program, the membership is of being a citizen is being in the lung cancer community and then being interested in getting hands-on research experience. So not being a participant, that's different. know, filling in a survey, joining a focus group.

That's not what we're defining citizen science as. That's more as participating in research. The citizen scientists are really behaving as a scientist would by having conversations about what is the research question, what's the design of the study, what are some of the factors we're going to have to consider as we sort of roll this out for implementation and dissemination.

The Patient From Hell Podcast (36:14.773)
What is LUNGevity?

Bellinda King-Kallimanis (36:17.016)
It is a nonprofit that's focused on lung cancer and we are at the national level. So we provide services for the community across a number of different pathways. So we do have patient services that do mentoring. We have social worker, nurse who can help people navigate very specific issues.

But we also have a policy team that work on policy related issues. So whether that be something that the FDA is planning to do or as I said, centers for Medicaid and Medicare services. We have folks who work on issues around specific to those sorts of things. We also have a group that work on screening initiatives to try and create again, more materials, especially for those who are in communities where it might be challenging to access these services.

And so it's a rather large group of people who work basically to improve outcomes for people living with lung cancer.

The Patient From Hell Podcast (37:19.861)
Alright, my final question for you is what is your favorite chocolate?

Bellinda King-Kallimanis (37:25.626)
That's an incredibly difficult question to answer. That might be the most difficult because that one will depend on my mood because like all humans I'm inconsistent too. But right now maybe it is dark chocolate with caramel.

The Patient From Hell Podcast (37:47.432)
That sounds amazing. I'm hungry now.

But thank you for taking the time. I already know our community well enough to know that the rapid fire section of this episode is going to do very, very well and be very appreciated because you've really taken a very complex subject and demystified it and given us clarity in areas that are hard. They're hard topics. So thank you.

Bellinda King-Kallimanis (38:20.398)
They are hard, but I think we can do much better in this space. And I've really sort of 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. And it does not resonate with my family. They'll be like, what are you talking about? Who do you think you are? So we really want to be able to talk.

to people and connect the work we do, then we have to able to talk about it in much more simpler terms. And I mean, believe me, I can get as complicated, I can get complicated. But, but, but I really do think it's so important for us all to work on our abilities to make sure that we are speaking.

The Patient From Hell Podcast (39:01.259)
I'm aware.

Bellinda King-Kallimanis (39:12.908)
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 like a gap in the understanding and healthcare is already like very complex and cancer is really scary. And so, you know, just being aware of like not talking in acronyms all the time. Like I get that they're easy to sort of roll off the top of your tongue once you, but once you get used to them, like when I started at FDA,

I'd been working in industry and just even being an FDA, like it was a whole lot of new acronyms and everyone there talks in letters and there's not that, it's not that easy to understand. And it just really puts a wall up between you and the community. And that's what we sort of strive not to do in our patient focused research center at LUNGevity where we want to have the community involved.

The Patient From Hell Podcast (40:12.191)
You know I admire you a lot for all of the work you do and hopefully together we can stop the chip away. I think that the problem is massive and I suspect it's going to require persistence.

Bellinda King-Kallimanis (40:25.954)
It's where can you find small improvements and keep them building and building and building right on those and helping. Sometimes it feels not enough to help a few people, but that still does make a difference. And then you try to scale it up and look for ways to scale

The Patient From Hell Podcast (40:43.499)
many reasons I love you. Thank you. Thanks for being a guest on this podcast. Thank you for sharing your wisdom with us. I have a sneaky feeling you will be back on our podcast in the future. We are open to it. We would love to have you again.

Bellinda King-Kallimanis (40:56.484)
Well, thank you. It's always a pleasure chatting, Samira. And thank you for having me.