How Do Scientists Use Lung Cancer Patient Perspective to Make Advances?

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

So you've been at medical conferences where you've heard people like Janet speak.  Does that inspire you when you are actually at what would otherwise be just thousands of cancer specialists, but the patient perspective is put right front and center?   

Dr. Sequist:

It's very inspiring, as I'm sure we'll talk about.  It was especially palpable this year at the World Lung Cancer Conference in Toronto just about five or six weeks ago.  Janet was there.  There were so many lung cancer advocates there, and this is a conference that's focused only on lung cancer, and it was really exciting.  

But I would say Janet and I have been running into each other at the hallways of medical conferences for many years, and it is always really interesting to get the patient perspective about a big result that was just presented maybe an hour earlier.  And I love running into people at meetings and talking to them about it.  It really helps inform our research.   

Andrew Schorr:

That's what I was going to ask—go ahead, Janet.  

Janet Freeman-Daily:

It's also very nice to run into a doctor after a presentation and say, what did they just say?  

Andrew Schorr:

Right.  Right.  So do you, Dr. Sequist besides inspiring you, and then there are people in labs who don't even—you see patients, but there are other people who are only in labs, do you feel that this communication with people who are living it can actually help get information, promote collaboration and accelerate us towards what we hope will be cures?  

Dr. Sequist:

Oh, absolutely.  It's a really vital two-way communication road. I think having patient advocates learn more about the research process, both the pros and cons about the research process, and see what all is involved and what hurdles we have to deal with all the time as researchers can be really helpful.  We need their help advocating to get rid of some hurdles and the obstacles in our way.  

And there is nothing more informative than finding out what really is important to patients, especially when you're developing a new treatment, hearing from them about what they value, what they—you know, someone who is not living with it may think that a certain side effect is a big deal. Yet someone who is taking the medicine will say, you know, actually that's—I can deal with that if it's going to help me live longer.  And finding out where that balance lies is really important and not something you can just guess if you're not in the shoes of a patient.  

Andrew Schorr:

You've been with Merisa every step of the way, and unfortunately, she was diagnosed in 2015 at what, age… 

Jessica Wittebort:

…she just turned 30, yeah. 

Andrew Schorr:

She just turned 30. You're her big sister.  From the family perspective, what do you hope, with closer collaboration with researchers, practitioners like Dr. Sequist, what do you hope?  

Jessica Wittebort:

Well, gosh, I think we're really just hoping to expedite research, and we want to be part of that journey.  You know, I think when Merisa goes in to see her oncologist and he gives her a high five because she's doing well, you know at a granular level that that relationship and that everybody is pushing for the same thing.  

I think a little bit that gets lost in translation sometimes when you can get swallowed by the information that comes out of a conference if you're not carefully, right, so learning how to translate that information into something tangible and consumable and being able to respond back to your healthcare professionals I think is just that bridge that's essential to moving things forward.  

Andrew Schorr:

And you've been to some conferences.  I saw you at the Biden Cancer Summit, which had a lot of patients and patient advocates there, but I think you've been to—where did you go, to Austria or someplace?  

Jessica Wittebort:

Yeah, I went to World Lung in Austria, to meet Janet, frankly.  No, I mean, to see some incredible work in progress and some incredible work, and it's a tremendous amount of content.  I probably understood, you know, 5 percent of it, but at least it got me there starting to understand what the language was, starting to understand what the potential impact of clinical trials are, starting to feel just a tremendous amount of hope that lives through science, and to see my colleagues.  You know, Janet is pretty much family, so I think these conferences, it's incredible when patients not only part—you know, really participating, I think that's a big deal.  

Janet Freeman-Daily:

It was also really great for the—there were several ROS1ders there, people who had ROS1 cancer dealing with it at the end of conference, and we got to go up en masse and talk to the researchers about what they were doing, which was educational for us, and I think most of them felt fairly enthused about it too.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.