[00:00:00] Adam Walker: From Susan G Komen, this is Real Pink, A podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
[00:00:17] Knowledge is power, and when it comes to breast cancer, having access to accurate, up-to-date information can make all the difference. That’s why Susan G Komen is committed to providing trusted educational resources that empower patients, caregivers, and families to make informed decisions about their care.
[00:00:35] Today we’re joined by Jessica Thompson, who is both a survivor and health communications scientist to walk us through where the breast cancer community can turn to find comprehensive, unbiased information, what they will find there, and the vigorous review process that Komen uses to create its content, starting with their longstanding partnership with Dana-Farber Harvard Cancer Center.
[00:00:58] Jessica, welcome to the show.
[00:01:00] Jessica Thompson: Thank you for having me. I’m excited to be here.
[00:01:03] Adam Walker: I’m kind of excited to talk to you about this because information is so important and I feel like increasingly the internet makes it so hard to know what to trust and for, I think for cancer, it’s so critical, right? And so I, I love that you’re here.
[00:01:19] We’re going to get to talk about this. So, when you get diagnosed with breast cancer, the amount of information you receive can just be overwhelming. So I’d like to start today by grounding in why it’s important to seek out reliable evidence-based health information online.
[00:01:35] Jessica Thompson: Yeah, absolutely. And you hit the nail on the head.
[00:01:38] It’s absolutely overwhelming. The amount of information that we have access to is patients for better or for worse, right? So, you know, this information comes from so many different sources. So first of all, you know, I think most importantly is the information that you get from your healthcare provider, from your oncologist will be.
[00:02:03] The most important information you receive. So I think patients need to remember that, that they should put a lot of stock and credibility of the information that they’re receiving because from their provider, they’ve spent their livelihoods, their lives, understanding this topic, reading on this topic, attending seminars and conferences.
[00:02:23] They have so much experience and like, and the appropriate lens to understand all of this very complex, sometimes conflicting information. So. I do want to to start with that and emphasize the importance of your provider. However, it is also equally important that we as patients are informed and we have some basis of in knowledge on this topic.
[00:02:47] And that’s where the internet comes in, right? We also have friends and family that, you know, they are very well intended and they want to share good information with us, but that it’s not always the right information or helpful information, right? So I just remember when I was diagnosed, it was about 10 years ago.
[00:03:06] I, you know, very well intended family and friends would reach out to me and say, you know do you think your water bottle caused your breast cancer, or do have you thought about changing your shower curtain? Maybe that was, and so again their concern was very well intended, but they’re not always guided by reliable information.
[00:03:27] It’s just something that they may have seen on social media or something. Right. So.
[00:03:32] Adam Walker: Yeah.
[00:03:32] Jessica Thompson: Anyway, so that’s a kind of an introduction more to your question about the importance of looking for credible information online. And, you know, I think the biggest takeaway I want to give patients today is just how important that
[00:03:49] heart is. So if you are going to go online and look for information, and I absolutely hope that you do, to be informed, think carefully about where you’re going to go for information, because this information, it varies in its accuracy, its quality, its audience who is, its intended for and it’s so important to know
[00:04:13] where to go and the first thing I hope patients do is to ask their care team, where should I go for information? And they will give patients credible websites to go to. And that is so important. And hopefully the Komen website will be on that list. And it definitely should be. And we’ll get to that in a minute about why it should be.
[00:04:38] But I know that my oncologist gave me a handout and said, here are some of the resources we think that you know are written in plain language. They’re patient friendly, they’re credible, and here’s where you should go for information and another piece of advice that was shared with me by my care team was to be very careful with social media, right?
[00:05:02] Yeah. And blogs and Facebook and it’s a double-edged sword because you know what they can do is provide patients with a forum a place to go for support. Right? And that is really important. I don’t want to minimize the value of finding that support system, whether it be, you know, in your home or church or online, that is very important to patients.
[00:05:27] However, the information that comes across these, you know, media sites and on comments and on blogs is it’s varied and it’s not always Accurate and, and it’s not often intentionally dishonest, it’s just misformed or it could be misperceived. Right.
[00:05:48] Adam Walker: And it’s anecdotal, right? And so there, because it’s anecdotal, it’s their lived experience, which isn’t good or bad, but it also doesn’t stand, it doesn’t mean it’s standardized and can be applied across to every other population as well.
[00:06:00] Right?
[00:06:00] Jessica Thompson: That is exactly right. And just to give you one example, I remember when. I was at a point in my treatment where I was going to start taking Tamoxifen, which is a drug to prevent recurrence of breast cancer and is a very commonly used drug. And so I made the mistake of going on to some blogs and websites.
[00:06:22] I was just curious what other people said about it and the overwhelming comments on this drug we’re very negative. They talked about, you know, patients talk about all the, you know, side effects and so if I had walked away from that information alone, I might have thought this drug is not for me. But what I had to remember is that for 80 to 90% of patients, they tolerate this drug just fine.
[00:06:44] And it is a right very effective drug, but there’s that 10% naturally that it may not work for, and those are the vocal 10% that we’re going to hear from, right. So.
[00:06:56] Adam Walker: Yeah. Yeah.
[00:06:57] Jessica Thompson: It’s not that it’s not credible, this is their lived experience, but it may not apply to the rest of us.
[00:07:03] Adam Walker: Well, I mean, and to your point, right?
[00:07:04] If it, if you take a drug and it works. You’re not very likely to go look up the Reddit thread about that drug and be like, this is the greatest thing ever. It’s just, it’s not even on your mind at all. You forget the name of it practically. Exactly. But if it doesn’t work, you’re very likely to do that.
[00:07:17] Right, exactly. So I think the incentives are different and that’s kinda, but I’m glad you brought that up. That’s really helpful. Now you mentioned komen.org, so obviously we gotta talk about that. So what kind of information well readers find within the “about breast cancer” section on komen.org.
[00:07:31] And can you talk about how the information is reviewed and vetted?
[00:07:35] Jessica Thompson: Yeah. So yeah, so two parts of that. What kind of information is on there? I think the easy answer is everything that you can imagine. They they do a really good job, a very comprehensive job of like answering any question you may have about breast cancer.
[00:07:51] So if you have a question, there is probably information on there, and it’s very well organized with headings. There are search, you know, search functions in there that you can search what you’re looking for. There are glossaries to define these terms. So whatever you are looking for, you can be pretty assured you’re going to find it on there.
[00:08:13] They also do a really good job of updating this evidence because as we know, like treatments are always evolving, new evidence is always coming out. And so they’re very good about updating this on a very regular basis. So it’s all on there.
[00:08:29] Adam Walker: Yeah, that’s right. And a lot of information on there. And I also understand it’s been co-developed with Harvard Medical School faculty and Dana-Farber Harvard Cancer Center staff, and also understand that Komen scholars and advocates in science.
[00:08:44] Are also brought in to review the about breast cancer information which is where you come in. So what is your role and why is this step important?
[00:08:53] Jessica Thompson: Yeah, no, that’s a great step. So like, like you said Komen’s first step is to work with faculty and clinicians at Dana-Farber, at Harvard Cancer Center to co-create this information.
[00:09:08] And that’s a really important piece because these are clinicians and professionals who know this evidence well. So they’re putting on their academic, their clinical hat to help write and they know. They know this information, right? And so that’s a very important first piece of it. The challenge is because I’m a research scientist as well, and I know that just because
[00:09:33] we have written something is research science doesn’t mean it’s going to be understood to the patient community. We actually, as research scientists, we do sometimes a kind of not so great job of communicating our information back to patients. We may understand it very well, but it, the language that we use is not always, desirable. So that’s where these patient advocates come in. And I’m also, you know, I wear two hats. One as a scientist and was a one as a patient advocate. That is where having real patients read and react to this information is a really important step because, you know, invariably there may be some information that it is just hard to understand or misunderstood in some way, or confusing or conflicting.
[00:10:24] And so it’s really important to hear that from patients so we can address that.
[00:10:29] Adam Walker: I love that you do that because I feel like you know it, it’s so easy for us to create communication. And think, oh, it’s obviously clear, we just created it. But until people read it and consume it and can repeat it back to you, you really, you don’t know if it’s been communicated well.
[00:10:47] And so I love that you’re taking that step to, to do that. That’s fantastic. Yep. So you’re also in another unique position. Where you’re a survivor and a health communications scientist. When you have your survivor hat on, what do you appreciate about how Komen provides information?
[00:11:05] Jessica Thompson: Yeah that’s a great question and I love what they’ve done with their website for so many reasons, and I’ll just rattle off a few examples.
[00:11:17] They take great care to explain this information in very plain common language, and that is very important that they’re not using the scientific and medical jargon that, you know, physicians and clinicians may use in their world, but they’re using and explaining these concepts in very simple, common terms.
[00:11:39] We do not need fancy terms to to explain this to patients. And this is not dumbing down of information in any way. It’s just more about explaining something clearly and concisely and that’s the most important part.
[00:11:52] Adam Walker: Yeah. Well, I mean it’s why we do this, right? Right. That is the whole point of this is to, let’s have a chat and let’s make it make sense.
[00:12:00] If makes, if I, if it makes sense to me, then we’re doing all right.
[00:12:04] Jessica Thompson: That is exactly right. Make it make sense. That’s the, and you know some other things they do really well are the way they explain numbers. I, you know, I’ve seen people want some numbers. They want some quantitative information.
[00:12:16] Like, you know, one in eight people will be diagnosed with breast cancer. That’s a very digestible way to share information. We don’t need fancy statistics and p-value, you know what, just give it, give me the number that I’m going to understand. Right? Yeah. And so they do a nice job with that. And just simple things like, it’s just very visually appealing to go to their website.
[00:12:39] Things are laid out very nicely. It’s colorful. They use images that we can resonate with and you know, you need to have some sort of visual appeal. I don’t want to open a big report, right?
[00:12:54] Adam Walker: Yeah. Right.
[00:12:55] Jessica Thompson: They do a nice job of wanting you to stay on that website. Yeah. Well and I think there’s like additional materials there.
[00:13:02] Adam Walker: I mean, there’s not just the podcast, right, but there’s blog posts and there’s other materials where you can sort of see your story there and sort of read into it and really better understand contextually sort of all the information. Right?
[00:13:16] Jessica Thompson: Right, right. That’s right. Yeah. One thing they do well and that I appreciate is.
[00:13:22] They’ve kind of sprinkled in some patient testimonials or patient narratives throughout their website. And, you know, not everybody consumes information the same way. Some people like to really read and dig into this information and go to every hyperlink and pull up the original study. So some people are just wired that way to, to consume information, but other people might be more, auditory learners and just want to hear from other patients like them with lived experience. And so that’s, there’s something for everybody on that website. And I’ve actually really enjoyed pressing play on those testimonials and hearing from real patients with lived experience. And it really humanizes that information.
[00:14:08] And I think some people really relate better to that type of learning. Yeah. Well and the opportunity to have it in so many formats to your point is really helpful. So, so talk a little bit about, you know, how Komen’s website also relates to, you know, survivors to caregivers.
[00:14:27] Adam Walker: Yeah. To, I mean, anyone that wants to learn more about breast cancer.
[00:14:32] Jessica Thompson: Yep. So their website is set up in a way that it is appealing to just about any audience that wants to learn about breast cancer. So if you are a caregiver, there may be some pages or FAQs or resources that are tailored for you as a caregiver.
[00:14:49] If you are a if you’re a clinician, there’s some, you know, interesting facts and figures and data, and you can take a deeper dive into this information if you are, you know, inclined to do so. But it’s also very digestible for just, you know, your everyday patient wanting to learn the basics of this, you know, diagnosis that they just received.
[00:15:14] And like you said, patients are so overwhelmed when they first get this diagnosis that your ability to just take everything in is kind of diminished. You’re just overwhelmed. And so they do a really good job of just breaking it down. Like, here are the facts, the things you need to know. Here’s an FAQ, here are important questions you want to ask your doctor.
[00:15:36] So you don’t want to be. So overwhelmed with pages and pages of information, you just need to know like, here are five things I need to know. And their website does a good job of pulling those out for you.
[00:15:47] Adam Walker: Yeah. I and to your point earlier, it also goes deeper, right? So you can skim over it, you can get the basic information, or if you’re at the point where you can, you know, mentally consume more, you have that opportunity to do that.
[00:16:00] You can take that deep dive. That’s exactly right. Alright, so, so last question. Do you have any last piece of advice for someone that needs information during a stressful time? Where can listeners go to access good quality information online?
[00:16:15] Jessica Thompson: Yeah, absolutely. Well, good quality information online.
[00:16:18] I I was first going to say I think always your provider is the first stop for information. They can appoint you, but if you’re going online, start with a credible website. Ask your care team what they recommend for your situation. Definitely go to the Komen website. You can be assured that the information that they put on there is accurate, it’s credible, it’s quality, and it, not all websites can say that, right?
[00:16:53] So you mentioned the word evidence-based and I, it’s kind of a you know, a catchy term a lot these days that we hear about a lot, and I think it’s important for patients to know really what that means, what does evidence-based mean and what we’re referring to when Komen says we have evidence-based information on our website, so that means that
[00:17:18] the clinicians, the advisors from Dana-Farber and Harvard Cancer Center, the information they provide has been usually published in a peer review journal and I could explain what that means because not everyone is, you know, familiar with that. Yeah. Please do. Please do that world of like peer review, but
[00:17:38] Adam Walker: I mean, we hear the term all the time and I smile and nod when I hear it.
[00:17:42] I’m not entirely sure that I could define it. So let please do that. Yeah. Right.
[00:17:46] Jessica Thompson: So what that means is a scientist, when we have conducted a study and we complete it, we write up our results and we want to share it with the world, right? Mm-hmm. And so one many ways to do that. But the traditional way we’ve do done this is through peer reviewed journals.
[00:18:06] And so we will submit our findings in a in a format of a scientific manuscript, and it has to go through different rounds of reviews from other scientists who have some familiarity with what, what we’re doing on this topic, and we are not paid to do this is part of just our job as scientists.
[00:18:30] Our, like our duty, our responsibility is to review each other’s work. We won’t have a name attached to that file, so we don’t know whose work this is. Okay? But our job is to just provide a candid review and evaluation of the science. And our goal is not to rip it apart, but we just want to make sure, like, can we trust this finding?
[00:18:52] And I not just imply that there’s anything distrustful about it, but can we be certain that this conclusion, this finding is quality? Like, are we confident in this finding? Right. And is there anything else that could be explaining it? And we’re just trying to help each other produce the best quality,
[00:19:10] credible information that we can, so we’re helping each other out. Right?
[00:19:14] Adam Walker: Love that.
[00:19:14] Jessica Thompson: So if you’ve gone through all these, you know, rounds of review from your peers and then the editor of the journal signs off on it, you can be pretty assured that we are confident that this is a good a, a good finding that we can stand behind.
[00:19:30] And so what, you know, Komen is going to do is when they cite some of these ev, you know, cite evidence or cite studies or cite a statistic. We can be assured that this is a quality piece of information. Yeah. You may, if you go off onto some other Google, you may find something that’s completely conflicting with what you’ve read.
[00:19:54] I would, you can trust what Komen has put out there.
[00:19:57] Adam Walker: There might not be as many scientists behind that one. Right. That’s, I think that’s the point, right? Yeah. I mean, and I think it’s easy for us to think like. It’s easy to put something on a website and not recognize the rigor.
[00:20:07] Jessica Thompson: Yeah.
[00:20:07] Adam Walker: That goes into getting it to the Komen website.
[00:20:10] Right?
[00:20:11] Jessica Thompson: Exactly. It’s not like they’re just, you know, search something and stick it up there. There is a Process that starts from the day that the scientists has started their study years later today. They finish it, it goes through the, goes through publication, and then Komen and their partners. Look at that, evaluate the information, put on their website.
[00:20:29] So this is a very, very Rigorous process. So yeah. Yeah, a lot of that goes into it.
[00:20:36] Adam Walker: That’s great. I did not know that. So, and now I do. And that’s amazing. Well I appreciate the work that you do. It’s so important. Communication is so I think hard and underestimated and and so important.
[00:20:51] So thank you for the work that you do, and thank you for joining us on the show today.
[00:20:54] Jessica Thompson: Yeah, this was fun. Thank you.
[00:21:01] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit real pink.Komen.org. And for more on breast cancer, visit Komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam. You can find me on Twitter at AJ Walker or on my blog adam j walker.com.