Rea Blakey:

Hello everyone and welcome to this episode of Conversations on Cancer. You are watching the FDA Oncology Center of Excellence and we are thrilled to have you with us. Our topic today, we hope you will find extraordinarily interesting because it impacts all of us one way or another, it's called Cancer Misinformation: Truth or Consequences. And I must confess that the title was provided by our own Dr. Richard Pazdur who I'll introduce in just a moment. I should let you know that I am Rea Blakey. I'm the associate director for External Outreach and Engagement here at the Oncology Center of Excellence, and we're thrilled about this panel. A little later, you're going to hear from the FDA commissioner who has comments on this particular issue, which is a passion for him. But first, let's get to Dr. Pazdur and provide a quick welcome and maybe a little bit of a setup for why we're here today. Rick?

Dr. Richard Pazdur:

Thank you. Hi, I'm Rick Pazdur. I'm a medical oncologist and I am the director of the Oncology Center of Excellence, which was set up about five years ago under the original Moonshot program. And I'm happy to welcome you to this Conversation on Cancer, this is a particular topic that we're very interested in. Many of the health miscommunications have occurred predominantly or most notably during the COVID pandemic. But we should emphasize that many of these, and the problem with misinformation, it really predates the COVID pandemic, and it's important for us to realize that this is not a new problem. I was discussing with our staff earlier this morning, I remember it as a child growing up in Chicago when a family member of mine had cancer and there was a discussion about an unproven cancer remedy, so to speak, and the misinformation that surrounded that in the 1960s, so to speak.

So this problem that we have been facing here is not a new problem, but I think has been more prevalent and prominent with the advent of greater media exposure to health-related reporting, so to speak. So I'm very interested in having this panel discussion. We have a diverse group of people here representing different backgrounds, love to hear their opinions on this, what the problems are, what potential challenges there are to answering these problems and remedies to address the issues at hand. So I'll turn it back to Rea and we could get it on with the program, folks.

Rea Blakey:

All righty. Thank you, Rick. I do want to make sure to introduce our co-moderator today, Danielle Krol, also from the FDA. Danielle?

Danielle Krol:

Hi. Yes, thank you, Rea. My name is Danielle Krol. I am a breast and gynecological oncologist at the FDA. And it is my pleasure to be here today co-moderating this wonderful panel of experts. Thanks.

Rea Blakey:

And now to the experts, we have all agreed to address one another by first names, but we're asking for self-introductions first. Please do use your full name and your self-introduction, and I'll start with Neal. Hi.

Neal Augenstein:

Oh, hello there. My name is Neal Augenstein. For the last 27 years, I've been a reporter with WTOP, which is the all-news radio station here in Washington DC. Last November, this past November, I was diagnosed with stage 4 lung cancer, which came as a surprise to me as a never-smoker, but I'd had a couple of months of persistent cough. Since then, I've been documenting my journey on wtop.com and social media. My one pill a day targeted therapy has worked beautifully. And two weeks ago, I was able to have a lobectomy surgery to help reduce the chance of cancer returning. I'm glad to share my perspective as both a reporter and a patient, and thank you for inviting me to be part of this wonderful panel.

Rea Blakey:

Thanks, Neal. Great to hear your voice.

Neal Augenstein:

Thank you.

Rea Blakey:

Hi, Angus. How are you today?

Angus Chen:

I'm good. I'm glad to be here. Thanks for inviting me. I'm Angus Chen, I'm a reporter at STAT News. I focus on cancer. So for the past year and a half or so, I've written pretty much exclusively on oncology and cancer topics including basic research, clinical research, patient care policy, a pretty wide range of things that have to do with cancer research or medicine or patient care.

Rea Blakey:

Great to have you. And hello, Sylvia.

Sylvia Chou:

Hi everyone. It's a pleasure to be here. I'm a program director. My name is Sylvia Chou. In the National Cancer Institute, we have a branch on health communication and informatics. For the last five-ish plus years, I've been looking at the spread of misinformation and its impact on both cancer care and public health practice, and so it's great to join this panel for this discussion.

Rea Blakey:

And it's wonderful to have you with us today too. Hi, Julie.

Julie Gralow:

Hi. I'm Julie Gralow. I am the chief medical officer for the American Society of Clinical Pathology. So we are the professional organization for clinicians who care for people with cancer. Prior to taking on this role a couple of years ago, I spent 30 years as a breast medical oncologist and also a professor of GlobalHealth. So I've spent 30 years caring for patients with cancer, and now I've retired my clinical practice to serve as the medical voice for the people who care for people with cancer.

Rea Blakey:

Great to have you as well. And Eleonora.

Eleonora Teplinsky:

Thank you for having me. I'm Eleonora Teplinsky. I'm breast and gynecologic medical oncologist at Valley Health System in New Jersey, and a clinical assistant professor of medicine at the Icahn School of Medicine in Mount Sinai. And I really focus on using social media to combat misinformation and to bring information to patients and to educate them in a way that hopefully starts to break down some of the barriers that we see. So I'm really excited to be here and to be talking with everyone today.

Rea Blakey:

Wonderful. Now, Danielle, why don't you kind of set the stage for us a little bit?

Danielle Krol:

Yeah, great. Thank you so much and thank you everyone for being here. So as we know, the internet is changing the way that patients with cancer learn about their disease and the treatment options that they're faced with. Cancer misinformation has become an increasingly prevalent problem, potentially endangering public health and the understanding. Rapid evolution of social media platforms on the internet has facilitated the spread of misinformation, sometimes given rise to disinformation, which is intentional misinformation. And unfortunately, there are no clear methods or guidelines to verify the validity of information that is shared on mainstream news outlets or whatever gets posted to social media. So we are really excited today to bring together this amazing group of experts in medical journalism and also the field of oncology to give us examples of misinformation on social media platforms and also in the mainstream news outlets. And we are really here today with several goals and those being to discuss how cancer misinformation manifests, also to identify cancer misinformation as a problem on social media and also to give examples.

We are here to debate the responsibility of the media outlets for dissemination of sometimes questionable information. We're also here today to encourage cancer professionals to be aware that misinformation is a national problem, but also to proactively raise awareness about false information, and to identify health communication resources and training in health communication. So we have a lot to talk about today. Again, amazing panel to do that. So I am going to jump right in and I'm going to start with the first question for our panel to think about, and really that's to let's identify cancer misinformation as a problem on social media. So, Eleonora, if you can start us off by talking about this. So as a medical oncologist that uses social media as a platform for patient education, can you tell us how you got started in that, and can you also give us some examples of misinformation that you have come across?

Eleonora Teplinsky:

Sure. I think it's really important to have these conversations because whether doctors are present on social media or not, we are all seeing this in our exam rooms every single day. People are going online, that's where they're going to get their health information and hopefully they are actually talking about it with their doctors and their healthcare team. But years ago, I realized that there was so much out there and that unfortunately we're limited in how much time we can spend with patients. And I thought it would be helpful to get out there and say, "Look, here, this is where the patients are going. Let's show up there and try to break down some of these myths and the misinformation that we see, and we can talk a little bit about how social media platforms kind of give rise to certain voices or not."

But in terms of what we see, some of the common things with misinformation, so as a breast oncologist, number one, we see so much about mammography. And whether we should do it or not do it, there's this big push for thermography, which is not FDA-approved, does not screen for early breast cancer, but there's a lot of discussion about that. And then the other big topic that always comes up is nutrition and everything surrounding nutrition, sugar feeds cancer, those are just some of the things you have to take this supplement with this supplement and then your cancer will go away. And the problem is that people don't know what to believe or not to believe, and it's easy to trust someone because you want to stay healthy and you want to get better. So I think there's a lot driving it, but those are kind of two of the really big topics that I see over and over again recently.

Danielle Krol:

Yeah. So with that said, Sylvia, as a health communication scientist for the NIH with a background in social media and cancer, what do you have to say about that, and how the communication aspect is ,and who do you think are the most susceptible people to this cancer misinformation?

Sylvia Chou:

I think in some ways, we're all vulnerable because obviously with a cancer diagnosis and the uncertainty that's inherent in something like a health situation or diagnosis, you are subject to a lot of different opinions, a lot of information from a lot of different sources. So I think I want to underscore that all of us are potentially vulnerable in some ways or susceptible. That being said, the more we're looking into the information landscape today, the more we see how siloed things are, so people live in different information environments, have different media diets, whether it's the news channel they watch, the social media ecosystem they live in. So we're getting very different sources of information and that are potentially motivated by other reasons other than just all about health promoting our work.

So I think those of us in public health communication and even clinical care are really challenged because we are part of that ecosystem and we don't have a lot of control of that ecosystem, so how do we help people to make sure that good, credible, accurate information is available to everyone? I think it's a big challenge and that requires more than one sector working on this issue. The last thing I'll say is I don't think all cancer and all health topics are equal opportunity offenders. I think there are certain areas, as Eleonora already referenced, certain topics that have gained a lot of traction by disinformation agents, and there are other ones that have not been. So we really can't just say there's misinformation all over, we have to invest in understanding the nuances and the types of information why they spread. So that's some thoughts.

Rea Blakey:

So I see Julie nodding her head and I'm just wondering if there's something that you wanted to add to that.

Julie Gralow:

I was just thinking about the role of our patients and patient advocates in helping with this too, because I think there's, in some populations, an inherent mistrust of the professionals. And if we can work with patient advocates to get the message out in a way where they relate more to the patients and mistrust might be less, we'll get the messaging right. So I like that idea too, the theme of our annual meeting this year is actually Partnering With Patients: The Cornerstone of Cancer Care and Research. And so it's all about communication, but also working on what is the best way to overcome some of the mistrust of doctors, of the healthcare system, of the government as we've seen recently as well. So I think it's got to be a collaborative effort and there has to be different messaging depending on who we're talking to as well.

Rea Blakey:

I think this is perfect setup for Angus, I know you've written a couple of articles specific to this issue of trust and mistrust.

Angus Chen:

Yeah, I have. I spend a lot of time reporting on mistrust that communities have towards medical and health institutions, why that mistrust exists and also how it can actually be repaired. I think what Julie said about patient advocates getting into the picture makes a big difference. Having someone who is part of a community that you identify with, that you recognize can go a long way with people. I think it's really important to think about where people get their information, and it is through nodes of trust. As one colleague mentioned recently that you tend to believe stuff that someone that you trust says, and then you tend to be skeptical of things that come from a source that you're mistrustful of. And I think when you talk about like, "Hey, what can health institutions do to write misinformation?" Part of it is trying to build trust or showing that they're trustworthy.

I think a lot about the pandemic when there was a lot of information that wasn't so certain, there was a lot of coming back and forth guidelines that made the public a little question about like, "Hey, what can we really believe?" That kind of thing hurts trust. Even going back further, you can think about like a Tuskegee like event of a county, or even just everyday interactions that people have with our health providers or officials that's are poor experiences. All these things can really harm trust. And the nature of trust, unfortunately, I think in some cases is that it's hard to gain and very easy to lose. So I think that's maybe a topic we'll continue to discuss during this panel, but why has that loss of trust been lost and how can it be repaired and how can that help in the fight against misinformation or disinformation?

Rea Blakey:

I don't know why Neal hasn't jumped in yet, but I'm going to wrap it right on his office desk. Neal.

Neal Augenstein:

Well, here I am, and as a longtime reporter, when I was diagnosed with cancer, I figured it was a pretty good chance for me to explain to my audience that as I was learning the information that I was learning, I had no idea about cancer. Obviously I'm a newbie, I've only had cancer since November, so I figured it might be valuable for people to learn as I learn. So I've attempted to go into this with the things that I discuss and the things that I report, I try to have them be similar hurdles that I would meet with my regular reporting, i.e. truths, verified, reporting sources, etc.

I've been very lucky in that my treatment has gone very well and I think that being able to report what I'm learning from my wonderful treatment team, I think that that has helped people to see that there is reason to trust, there is reason for hope, and even those diagnosed with stage 4 cancer can live a long healthy life. And my hope is, by documenting this, that others might feel like they can believe it and trust and seek out their own help.

Danielle Krol:

And just talking about trust here, want to ask Julie a little bit more about this because as a chief medical officer of the world's largest leading professional organization of oncologists, can you elaborate more on that, I know you can't speak for every oncologist in the entire country, but what ways is ASCO encouraging oncologists, but also really anyone caring for cancer patients, nurses, clinical trial coordinators? What is ASCO doing to encourage them to be more aware that trust is a problem and misinformation is a national problem? What do you think that can be done?

Julie Gralow:

Well, at least once a week I get some message through social media or something saying, "We know you're just hiding the cure for cancer, and if we had it, would put you out of business." Also, we get the feedback that if we prevented cancers, we would also put ourselves out of business, and so maybe we're hiding prevention. But the fact of the matter is our vision is a world where cancer is prevented or cured and every survivor is healthy. So this is our vision of our organization.

I think we have to have open lines of communication. I do think that most of our members, most professionals who care for patients with cancer are sensitive to the mistrust, are aware. Because if you see enough patients, they're coming to you and saying, "My family sent me a case of Noni juice and they said I should do this instead of chemotherapy. Or my best friend said she heard about somebody who took vitamin D and this cured their prostate cancer." We hear these things all the time. I don't think the medical community is unaware that misinformation is out there, and part of that is because there is a mistrust. So I think by keeping open the lines of communication, but also stressing that when we hear these things, we should be listening back again too.

Dr. Richard Pazdur:

And responding

Julie Gralow:

And responding.

Dr. Richard Pazdur:

I think that is a major issue of not responding, and silence denotes many times' acceptance, and we have to be active when somebody says something, address what's in front of us. But one of the other issues that I wanted to see, people would agree with me or disagree with me, I just feel this is becoming an increasing problem rather than a decreasing problem. And I could trace this to two major issues. One, the increasing polarization of our society basically, and distrust for authority in general, that somehow when you were describing Julie, some of the issues, a phrase that ran into my mind was paranoia runs deep, so to speak, in some people, but we have a distrust of the establishment in a sense.

Then we have an explosion of information and people bringing in to the doctor's office, just loads of reprints and things printed off the internet, and many times these people don't have the context to really analyze this information, they can't discuss it with their doctors. But again, they're not a physician, they have this information, but many times I've seen situations where people are misinterpreting animal studies and cures and mice, for example, as directly relatable to what might happen next week in a patient. And that's not true, so to speak. So does the panel think that misinformation, I should say, is increasing and what are the root causes?

Neal Augenstein:

Rick, if I can jump in here, I think that there really is on social media, obviously a lot of people who, for a variety of reasons, are only too happy to share misinformation or disinformation. Sometimes when you see something that's a load of whatever, we just ignore it and don't respond to it. Is it our responsibility to address every crackpot? Does that give them more air than they deserve? My suggestion to the government and to agencies that have good information to share is to provide and share on social media something that anybody could save in their camera roll, one little graphic that, for instance, let's say sugar feeds cancer, be able to save that on your phone, and respond to a load of malarkey with that image with links to good reputable sources. I think that would help improve the dialogue and the civility and perhaps get some more truth in...

PART 1 OF 4 ENDS [00:23:04]

Neal Augenstein:

And perhaps get some more truth in social media.

Eleonora Teplinsky:

Neal, I'll add to that. I think that's what you said with having reputable information live on social media. There is a lot of reputable, wonderful information out there, Cancer.Net [inaudible 00:23:18] patient-facing website is wonderful, but it's mostly on the internet. And so if you are searching on social media, you're putting in breast cancer in that search, you're not necessarily getting that information. And the problem that I see exists on social media is, what do these algorithms that are constantly changing promote? They promote things that get a lot of likes and shares. And so the danger actually, I think sometimes in a act of goodwill, people want to share misinformation and say, "Don't follow this, this is wrong and this is not true." And the social media platform say, "Oh, people like this," and they promote it, right? So what ends up happening is these echo chambers where you can really find honestly anything to support what you're looking for, and there isn't special verification for healthcare educators.

Dr. Richard Pazdur:

And the provocative gets clicks, not the reasonable. The outrageous gets clicks. The cancer cure that somebody's hiding, that gets a click, not the reasonable reporting of a factual event, so to speak.

Rea Blakey:

And by the way-

Sylvia Chou:

Because attention is-

Rea Blakey:

Oh, I'm sorry. Do you want to clarify this information that seems to be floating around with some people that we are hiding a cure for cancer? Rick?

Dr. Richard Pazdur:

Oh, obviously not. Our problem is just the opposite, is controlling industry from the FDA point of view, making outrageous claims about their drugs. That's our issue when we take a look at most of the advertising, is it truthful and not misleading? And we have a limited scope here at the FDA and what we could do as far as from our legal perspective on a regulated industry because it has to be balanced obviously, against First Amendment rights of communication from many of these companies. But this is something that has been not recent, but throughout my career, this concept that somehow this answer is being hidden by the establishment. It goes back to this kind of paranoid, polarizing viewpoints and the society of the man, so to speak, hiding the information from the public, the establishment hiding an answer here. We all have patients or family members with cancer and have suffered with this disease personally, and have no reason to hide something from anyone.

Rea Blakey:

I just wanted be clear because you've mentioned it, so I wanted to give you the chance to literally say, "We're not doing that." Go ahead. I'm sorry, Angus.

Angus Chen:

No worries. I just wanted to say, a part of this dialogue is also that, why is it so easy for people to believe that an agency like the FDA is hiding a cure for cancer? Why is it so easy for people to be willing to share that type of belief? You just used the word paranoia but I think from my perspective, it's not necessarily always paranoia. It goes back to this question of trust, and there are a lot of communities in the US that have really suffered tremendously because of the actions of health institutions, of government agencies that have done damage to these communities.

Dr. Richard Pazdur:

But it's many, many folds because this is rampant not in one social group, but throughout various social strata, and it is not relegated to any ethnic minority group. There might be more prevalence of this but throughout the complete social strata, there exist these concepts that are false and are misleading and are perpetuated in various public forums, whether it be social media, print, or television.

Julie Gralow:

You asked, sorry,

Sylvia Chou:

Go ahead.

Danielle Krol:

Go ahead, Julie.

Julie Gralow:

I was going to say, Rick, you asked, "Is this getting worse?" Well, I started my career before we had the World Wide Web so we didn't have very many places to go and look for information in that era. Now we have Dr. Google, we've got social media, it's rampant, it's easily accessible. AI's coming into this. ChatGPT, it's not hard to type in, "How should I treat my metastatic ovarian cancer?" and get an answer that comes up instantly. Most of that is right, but some of it isn't because it's pulling out of what's on the internet. Eleonora, I think you said it's how many likes did you get for something, and then that gets pulled into what AI is putting out. So not only has it become more common, but it's going to accelerate dramatically with artificial intelligence and machine learning in the very near future.

Dr. Richard Pazdur:

Julie, I wanted to touch bases with you on this point and maybe Angus could also comment, the upcoming ASCO meeting is not only a scientific meeting, but it's a public meeting where the press is very involved, investors are very involved, you guys have a huge press presence there, there's embargoes, et cetera. How do you focus on getting correct information out versus the spin doctor, so to speak?

Julie Gralow:

Great question, since I was just in New York yesterday doing in-person press briefings, and I had two right before this this morning, and I've got a whole bunch more. We are about evidence and science in order to get the best outcomes, so are you. We're here with the Oncology Center of Excellence at the FDA, which is 100% based on evidence to get drugs approved. So first we have a scientific review committee essentially that grades all the abstracts that come in based on their scientific content, and then we have a news planning committee that takes the ones with high science and then rates them for which ones should we promote to the press, which ones do we think the press will pick up on so that we can prepare the dialogue and help direct the dialogue on that.

We spend a lot of time and effort in picking out, what's the most exciting, what's the most promising, what is ready to impact care tomorrow or in the near future when the FDA approves the drug? Yeah, that's really interesting, that mouse study, but it's going to take a while to really get the evidence in humans that show that it's better than what we have or less toxic than we have. So [inaudible 00:30:24] and to my point about the patients, we have a lot of patient advocates who attend our meeting. We put them on panels, we have them as speakers so that we can get the language down and get the right information out there. The promotion of evidence and science versus anecdote and what happened in one person or a true charlatan, a huckster who's out there just trying to make money. It spans all of that.

Dr. Richard Pazdur:

Angus, I'd like to follow up on that 'cause STAT obviously has a presence at ASCO, and I'm sure the reporters are kind of lobbied to report by certain individuals that come up to you and say, "We're presenting this and this is a great breakthrough," and they have their own interest as the investment community is there, et cetera. How do you deal with this because there's a great deal of pressure on the reporters? Because once it's reported in a reputable publication, there's some credence to it, so to speak, and everybody wants to get their drug highlighted as the star of ASCO or something like that, or a scientific meeting.

Angus Chen:

I think it's a really good question. All the reporters that I know who attend these meetings do look at the press program that's created by ASCO or AACR or [inaudible 00:31:50], what have you. But I think it's also important for the reporter to do their own due diligence and say, hey, this is the press program that was created, but there's also lots of other things going on. Let's take a look and decide for ourselves, on top of what we're hearing from other people, what's really newsworthy and what's going to, as Julie mentioned, impact patient care tomorrow? Like, what's going to change the standard of care soon? I think that's just one metric. There's lots of things that go into what makes the story newsworthy, but more important than anything is having a certain level of scientific and medical literacy among your science reporters.

I think that's something that our news organization does, is something that other news organizations that I've worked at have also made a lot of effort to do, is to go to health journalist meetings or science journalist meetings and say, "Hey, this is what a P value is. Here's how you read the methods section of these types of papers, or here's how you should interpret some kinds of results." Having that sort of baseline level of knowledge is really important, and then the skill to make sure that you're communicating that effectively to a general audience. I think Neal also has on that.

Dr. Richard Pazdur:

Yeah. Neal, jump in.

Neal Augenstein:

That that's a great point, Angus. As a reporter for a general news outlet, we don't have the expertise that you do in analyzing that. And as reporters, we do reach a large audience. So the challenge for reporters and ASCO and other organizations is to make experts available to help share the information in a digestible way that even a hack reporter could handle it correctly. I think that you really do need to look at the lowest common denominator in sharing your information. Hopefully you'll get a reporter who has some expertise, some knowledge about what it is that you're sharing, but the reality is sometimes you get an entry level person who doesn't have that expertise. When you are able to share your information in a digestible, easy-to-follow way, I think that you'll be more pleased by the news coverage and that facts are being shared rather than just hype.

Dr. Richard Pazdur:

There's two words that come into my mind and they both begin with S, scrutiny and skepticism, and I think that's something we have to have at the FDA because when we get people coming in to our organization to get their drugs approved, there's a degree of hype there that we have to get through and we have to scrutinize things and also be skeptical. It's not just doing a book report on something somebody submits to us. And I think that for most of the true reporters that are really focusing and have an in-depth knowledge of the subject material, that is something that they have to have, and I think that most of the professional trade press does have that.

Neal Augenstein:

Sorry, Rick, but I will tell you that I think the most damage can be done by someone who's not in the trade press, by someone who's not knowledgeable of that. So as I said, you really need to aim for the lowest common denominator and make it clear for someone with zero knowledge and frankly zero interest in researching anything. You've got to lay it out for them so that if they can copy and paste, they'll get it right.

Dr. Richard Pazdur:

Sylvia?

Danielle Krol:

Sylvia?

Sylvia Chou:

Scrutiny and skepticism, I've been thinking at what point it gets to be cynicism. We were talking about polarization and this idea that conspiratorial mindsets are really going to town because so much of the disinformation agents actually leverage people's negative emotions. I always say anger and rage are the most effective communication tools. If you can tap into someone's anger and outrage, you can sell them anything. And so I think sometimes when we do science communication, we are so earnestly focusing on the information that maybe there is an element of relationship and social fabrics that we need to also be mindful of. When we are conveying this findings, what does that mean? When you are looking at it from a scientific perspective, you may say, here are the takeaways. What if you are a patient whose diagnosis share same words as whatever the discoveries, and you think, okay, they're hiding it from me. Apparently ASCO is already reporting on this. My doctor's not giving that treatment to me. So I think it's important to think about the psychology of how people hear information and the relationships they have-

Dr. Richard Pazdur:

And it's really about contextualizing who your audience is too.

Danielle Krol:

Eleonora, I want to hear what you have to say about this because you are a practicing oncologist, you have a lot of patients, and you are very outspoken on your social media platform. Talk about this. When you see the research being presented at ASCO, I see you on social media talking about those abstracts. So Eleonora, explain to us what your perception is of this. What is your perception of the reporter side versus the oncologist side doing the reporting?

Eleonora Teplinsky:

I think, Sylvia, you made a really good point just now, that people are seeing this in the New York Times and their doctor hasn't talked to them about it. It already creates an element of distrust. The biggest thing I always try to do is take a step back and recognize that people are living with stage four breast cancer and they're seeing "New Drug" front page in the New York Times. Maybe you want that drug, and so I think one of the things we don't talk about is, from study presentation to FDA approval takes some time. Those drugs, just because they're front page in the New York Times, they're not available to patients that day very often. There's a lot that goes into it.

One of the things that we as oncologists can do and are limited because we don't have the time sometimes is to take a step back and to talk to the patient about why it's not right for them at that moment, or to say, "You know what? I see that you're interested in this supplement. Here's why I am concerned about it right now, but maybe we can revisit it when you're done with chemotherapy." So I think it's that meeting in the middle. When we just say no without an explanation, it creates that distrust. And I think people are still going to look for that, but they then maybe don't feel comfortable in bringing that to their doctor anymore, so now we're hiding stuff. And so I think just taking a step back and saying for anyone, for every healthcare professional, we have a little bit of responsibility to really address these claims in a non-judgmental way, and it's hard but we can do it.

Danielle Krol:

Great point.

Dr. Richard Pazdur:

One of the things that we did to address this very early on when I arrived is send out, on the day that we approve a drug, the approval summary and the product label to all of the practicing oncologists that are members of ASCO, because it was just this fact, I experienced it when I was in practice. The FDA approves a drug. I don't know about it. I just see something perhaps in the New York Times or in the Houston Post or whatever it was. I don't have really the information. The patient has the exact same information and they're seeking more information about this. So we've tried to really develop this situation. The best that we could is really to get this information out to the doctors first on the day of approval. So the minute we send the letter to the company, a burst, an email goes out to all ASCO members in the US giving them the summary of the approval.

They have it, so when they see the patient the next day after the lay press comes out, they have the scientific information in front of us. And that was one of the things that we really stressed, that this has to be timely on the day of approval. So people see this, the patients see it in the press, they're going to be coming to the doctor right away. What is this drug approved for? Blah, blah, blah, is it right for me? And the doctor has that information right away in front of them. So we really thought about this and that was one of the motivations for getting out those ASCO bursts, which I think goes out to I don't know how many thousands of people at ASCO on the day of approvals.

Sylvia Chou:

I want to go back to one comment that kind of started circulating about when to correct or when to debunk and what to do. Do you worry about causing more problems? I've been very tuned into the current literature on this, and to a large extent, the backfire effect that has been feared, has been over-exaggerated. They're not finding a lot of back fact effects, so I think, Rick, to your point, when you hear something and you're realizing this is not credible, it's important to speak up. But as Eleonora said, the important part is not to be judgmental and say, "Where'd you get that from?" No, that's all just a bunch of bogus. If you're treating that relationship or that encounter with an attitude of not trusting your patient, then you're not earning their trust back.

I think it's important to listen, but it's important to speak up as well. That's one thing that we saw a lot at the beginning of the pandemic. When the vaccine discussions happened, you hear anecdotes of pediatricians and patients saying, "We're firing our doctors," or, "I'm firing my patient." And I think that was such a missed opportunity for actual dialogue because everybody's like, "I can't stand that other side." So that's one thing I'm paying a lot more attention to, which is in addition to information sharing, what does that communication do to the relationship?

Dr. Richard Pazdur:

And here again, there's an old adage that we have in oncology, you hear but you do not accept. You could tell people things, but if their underlying baseline is not accepting that information because they have such strong previously held convictions about a process, it sometimes is a daunting issue to try to address that issue because they bring in so much with them that is beyond that pure lack of information, so to speak. It really sometimes is a bias that, as I pointed out, perhaps points to more generalized issues in the society of distrust of the establishment. I wanted to go to Neal because one thing that really bothers me about the general press is, and this may be the tension between the reporter and maybe the producer, but this issue about attracting the viewers. You'll hear, "After this commercial break, we'll give you the cure for cancer," or, "Breakthrough therapy has just been approved that will transform cancer," this hype basically that comes out to bring the viewers back. How much is that, and how much control do people have over that in the newsroom?

Neal Augenstein:

I think that the news business, part of what we're trying to do is get listeners and viewers, so what you referred to as a tease or something like that, obviously that's something that's used often. I will say that a good and a trusted news organization will make sure that the report itself is well vetted and well reported and is accurate. I think that trying to change that part of the news business may be a fruitless-

Dr. Richard Pazdur:

You know what I'm talking about?

Neal Augenstein:

I certainly do. It may be a fruitless effort, but I think that your goal should be looking at the report and seeing if the report is accurate. So I think that hooking a listener in, that will probably not change in our lifetime. The hope is that by the time you hear a good report, you understand the facts, what's new, and you understand it in perspective, and you understand whether it's available now or whether it's in the works, and I think that is frankly a shared responsibility. The reporter needs to be able to ask enough questions to whoever's provided the information, whether it be the FDA or whether it be in other agency, until we can thoroughly understand what is new and what is newsworthy.

Angus Chen:

Rick, I want to jump in.

PART 2 OF 4 ENDS [00:46:04]

Neal Augenstein:

Newsworthy.

Angus Chen:

Hey Rick, I want to jump in as well. It sounds like a little bit of your objection to some of the strategies that our industry uses is sensationalism. I am getting that right? It's like you don't want these sensational headlines, these sensational teaser to be used because unfortunately the reality is that some people will only read the headline.

Dr. Richard Pazdur:

First, you can't take back something that has been said. Right,

Angus Chen:

Exactly.

Dr. Richard Pazdur:

If that's what is said, you can't take it back. And many times it's not the reporter that's doing it. It's the editor or the producer of the visual or audio program, so to speak.

Angus Chen:

Yeah, I think this is where maybe my opinion might differ a little bit from Neil's, and then I think that our industry overall has growth to do in this area. That we need to be better about making sure that the teasers we use and the headlines we use are accurately reflecting what you're going to get in the article. And I think I always felt like a good headline should never... You should never read a headline and then read the article and be like, "What the heck was this headline?" It should always be a promise of what you're really going to see in that article or in that broadcast.

And this is also I think, maybe some kind of collaboration between journalists and experts to say, "Hey, teach us a little bit better on how to write things that have the appropriate level of context." And then we also need to use our skills as writers and broadcasters to say, "Hey, how can we write a good hook that isn't going to lie to our audience?" And I don't know if lie is exactly the right word, but isn't going to say something that is going to lead someone astray. And I think that's actually really important. That's very, very important in our job in this entire information ecosystem.

Danielle Krol:

Angus, I love that you said that collaboration because a medical journalist may not have gone to medical school, whereas an oncologist did not go to journalism school. So finding that happy medium, that ground on what we can learn from each other, what we can do to be better, how can we collaborate in this ecosystem of medical journalism and giving medical information on research to the public is absolutely key to the future of this.

Angus Chen:

Yeah. And actually, I'll give you a recent example where I think it caused a lot of issues I think in the mainstream media. I wrote about this as well where there is a big clinical trial of invitation to colonoscopy done in Europe. And this caused a huge upset across all oncologists. Gastroenterologists especially, were very upset with the mainstream media coverage of this, partially because a lot of news outlets said, Hey, this randomized clinical control trial said that colonoscopy doesn't work, doesn't improve overall mortality. But that wasn't quite right. It was actually invitation to colonoscopy because the actual intervention was, hey, we sent out letters to people saying you should do a colonoscopy. And whether they did the colonoscopy or not was up to the receiver of that invitation.

And so it's actually this really important nuance that I think reporters need to be careful of. Like myself, I also had to be careful of this and I wrote two stories sort of covering the trial, also covering this deep discussion of everything around that trial. But also when you are a source to a journalist, say, hey, here's a really important distinction that's easy to miss, but you can't miss it.

Dr. Richard Pazdur:

Well, it's very interesting because people have different motivations and the motivation of the person giving the story and the reporter may be quite different. Because the reporter is interested sometimes in their own career. And I'll just share with you an example. I've had many stories written about me, obviously, and throughout the years somebody wrote a story, a personal story, and there were some, I would say factual inaccuracies that they played kind of wild and loose on a national newspaper. And when I questioned the reporter, after it came out, he said, "Rick, what do you care? You got in a top rate newspaper on a Sunday above the fold on the front page." He was going after what he was interested, not what I was interested in-

Neal Augenstein:

Sorry. Oh, Rick, I'm sorry. Sorry.

Dr. Richard Pazdur:

Go ahead.

Neal Augenstein:

I would like to push back on the suggestion that reporters are doing it because it would benefit them.

Dr. Richard Pazdur:

I'm not saying all of them.

Neal Augenstein:

I think that any reporter worth calling themselves a reporter lives in dread of getting something wrong. But a reporter, it was that flip with you and said, what do you care whether it was right or wrong? That's not a good reporter. I think that my hope and my expectation, obviously I don't speak for the entire industry, is that a reporter wants help in getting something right. Because no reporter ever wants to issue a correction. So I encourage you to spend that extra time, so that you understand what the reporter's going to say and the reporter understands that you agree with what it is that he going to report.

Dr. Richard Pazdur:

It wasn't inaccurate. Okay. There's inaccuracies and a way of presenting the information that colored itself somewhat. So wasn't exactly right. Okay. It wasn't exactly wrong. It was a different perspective. And that that's the subjectivity of reporting. So no, it wasn't that there were factual errors there. But here again, how to parlance a story is somewhat of an editorial decision that has to be made sometimes.

Danielle Krol:

Now back to the physician side, Eleanora, being practicing oncologists and you are out there communicating science information. Julie, you practice medicine, what would you tell your colleagues, or if you could do a presentation on this and tell other oncologists how to communicate better? I mean, what is your key message here with giving and providing resources and medical knowledge on a everyday basis? What is your key message that you would tell other oncologists to try to recognize or try to do? Unmute.

Eleonora Teplinsky:

Sorry. I would say I think there's always going to be misinformation. Yes, as we've talked about it is increasing, but I think the bottom line it comes down to is listening to your patient. Sitting down across the room with them, asking them what are their concerns? Why are they bringing this up? If they're reading that article in colonoscopy right now, they don't want to get a colonoscopy. Well, maybe there's a fear of getting a colonoscopy. So now they have this article that was not presented the right way in the media, but now they're saying, oh, great, I don't have to get one now, but maybe it's because their family member had a really bad experience with a colonoscopy. So I think just probing a little bit more, and I think this is really hard to do because we don't have the time sometimes. And I think that it's okay to say, you know what, let's schedule another visit to do this.

But I think being full-time in the clinic, having these conversations, it can get challenging, but I urge everyone to just persevere, and to not attack. I think that would be my other point, to not attack the misinformation, but to continue. And that's what I try to do online, is to continue to educate and share the right information. And that's just my strategy. That may not work for other people, but I think we can, instead of attacking, I think if we just push out credible, credible stuff, I think it will get picked up. Maybe that's an optimistic view.

Dr. Richard Pazdur:

I'd like to just point out. We're missing an important component here, and that is nursing and pharmacist. If you take a poll of trust, nurses actually come above physicians to American Trust in the healthcare system. I'm not going to go into the details on this, but I think what we really need to focus on that it's not just the medical oncologist. And here again, many times, especially when patients are getting intravenous therapies, et cetera, there's long periods of time where they spend with the nursing staff, where a lot of, not only education, but also communication about their disease, other therapeutic options, sharing things with other patients even that are in the chemotherapy administration suites, et cetera, are very important. And also the pharmacist in the community are extremely important because here again, they're the frontline there. People see them as the medical face, so to speak. And the role of these people are extremely important and they have equal responsibility as the medical oncologist, as well as other healthcare professionals in addressing that situation, and their impact can be quite profound. Quite profound.

Rea Blakey:

So Rick, I'm going to suggest that all of us have a certain level of responsibility, and while obviously medical professionals are on the front lines, every individual has the responsibility to try to educate themselves as best they can. But let's face it, this is a complex issue. So I'm asking to the panel, and this is in advance of us taking a look at the commissioner's comments because we are going to roll that tape for you eventually. But what are some of the red flags that Joe and Josephine average can look for to know that a story isn't credible, whether it's online or imprint, they hear it on television. What are things that would be red flags that you would say to somebody that can't possibly be, for example, using the word, miracle? Is that sufficient? Sylvia?

Sylvia Chou:

I think if it's too good to be true, it's probably too good to be true. And I also think if the motivation, if you're seeing, oh, who stands to benefit from this claim. You can tell a lot. So I often think about not just the information, but the source and the motivation behind it. Is it selling something or is it getting people to not trust their standard, whatever they're given? I think sometimes you learn a lot about that. One study, and several others have confirmed this, that the disinformation agents that weaponize a health topic, they don't do it just to spread misinformation. They also spread credible information. They basically get it to become appearance of a debate, a fight. And once you are like, okay, there seem to be many different opinions, who do I trust? Apathy and confusion sets in, and that's when they can benefit.

So I think it's very important to not just think about falsehoods, but about the ecosystem. It's very sophisticated. This is what I think somehow you would call a full spectrum propaganda approach on some of the topics that are weaponized in the discourse. So definitely I think if it's too good to be true or it seemed to be fishy motivations around it, I would say those are some reasons to be questioning.

Dr. Richard Pazdur:

One thing I'd like to draw for the panel to discuss is this concept I was thinking about. The more unmet medical need, is there more of a probability of medical disinformation or misinformation? In other words, if you're dealing with a patient that has a highly curable disease, is that going to be a different situation than somebody where there's very little to be done for that patient at that time? Because there is that vacuum, we'll look for things so to speak.

Rea Blakey:

The desperation factor.

Dr. Richard Pazdur:

For example, somebody being treated for a beginning Hodgkin's disease first, which is a curable disease, obviously. That might have a different persona around it and different environment as far as what people are looking for when they're told by their doctor that this is a highly curable disease if you follow this regimen, versus something if it's explained that there is not a lot to do for this disease and there are no drugs for this disease. And I'm just wondering maybe Neil, did you have a patient perspective on that? You're on mute.

Neal Augenstein:

Yeah, sorry about that. Yeah, I think that patients are always going to be looking for hope. And I think that in my particular case, if you Google lung cancer, what you see is dire. And I think that by spending some time looking for good information, reputable information, and also communicating with your treatment team, you can learn that it's a very different reality, and that the developments that have been made in the last several years have changed the possibilities for people who are diagnosed with a stage four disease. So I think that for you and for agencies and research groups that want to spread their information about the possibilities, I think explaining it in that kind of context would be helpful. And because I think that there is reason for hope. But I think that the idea is getting people to hear that story.

Eleonora Teplinsky:

I think we also... [inaudible 01:00:21] Go ahead. No, no, go ahead. I know, I was just going to quickly add, I think we also forget about side effects and quality of life and how that plays a role. And so I think when we think about maybe early stage disease where there is great treatment plan set out, but the side effects are brutal, that can lend itself to trying to find what's the alternative? How do I do this better?

Julie Gralow:

I think the consequences of where the misinformation takes you are much greater if you have a highly treatable situation. And because of the misinformation, with your early stage breast cancer, you go to Mexico and get coffee enemas, but you don't get surgery versus metastatic pancreatic cancer where we don't have a lot of options. So I think the consequences of what happens when we choose alternative therapies or we go down that route are much greater. And I think both Sylvia and Eleanora have brought up, we need to listen to our patients to understand why they're going in a direction, but also not shut them down.

So if a patient says, my example, "I'm going to go to Mexico and get coffee enemas." And that's what I've had patients say that, but I would say, "Can we schedule a follow-up appointment in three or four months just to check in and see how you're doing?" So not just shutting them down and say, okay, fine, you're going off here. You're not listening to me. But listening and being there and saying, we still want to be part of your team, and at some point you might decide that you want the surgery or whatever. And so can we just have a follow-up to make sure that we're not losing the communication?

Dr. Richard Pazdur:

Just to follow up on that. It's an interesting thing, and I'll just give you this story. Before I joined the FDA, I spent a great deal of time, several months in Taipei, Taiwan at a large hospital, veterans general hospital there, something like-

Sylvia Chou:

Rick, that's where I was born. I just [inaudible 01:02:18].

Dr. Richard Pazdur:

Okay, 10,000 beds, or 12,000, 20,000, something huge. It was unbelievable. And what was very interesting. We take a look in the west at conventional Chinese medicine and have put it aside, so to speak, but there they had the Chinese medicine and the western medicine in the same hospital, and people would get bonafide consults to the traditional Chinese medicine. And it was like somebody was being referred to radiation oncology. The medical oncologist would refer them to the traditional Chinese medicine. So there was this degree of respect for that principle of Chinese medicine and being culturally aware of the situation that they were dealing with. So people would be getting simultaneous therapies and they knew what they were getting, which is very important because you don't want to have a disconnect here between somebody doing something secretive, which could potentially harm the conventional therapy. But they were working really in tandem, which I was very surprised at and really appreciated the respect that the Chinese system had in that hospital. And I'm sure that's not unique to that hospital, that's for sure.

Julie Gralow:

In Seattle, at the Fred Hutch, we established an integrative medicine unit, which is led by a PhD naturopath. And we had acupuncture and we had massage therapy, and we had a nurse practitioner who specialized in medical marijuana. And by partnering with our colleagues in alternative and complimentary medicine and bringing it into our own facility, it's just as you said, you described in Taipei, we knew what they were on. We had communication. We showed that we were willing to talk back and forth. And I think we kept people from leaving the conventional medicine community. And I'm sure that we got better outcomes by however we would want to measure that, whether it's just the patients felt more comfortable, if not true outcomes from recurrence and survival.

Rea Blakey:

Angus, did you want to make a comment, and then after you make your comment, we'll take a look at the commissioner's comments?

Angus Chen:

Sure. Actually, this is somewhat of a comment, but also somewhat of a question that I have for Sylvia, if that's all right.

Rea Blakey:

Sure.

Angus Chen:

Sylvia, you, Julie and Eleanora all talked about having this non-judgemental approach in speaking with patients when they present with misinformation. I think that's really important in my reporting, having that sort of high touch kind of interaction makes a really big difference in building trust with that individual patient or with the community, if you're speaking with the community. But it also strikes me that if you're able to connect with the patient in that way and say, Hey, show them that this information is wrong, does it actually create a protective effect in the future from that person going back to that source again and saying, am I getting more misinformation. So not only are you spreading truthful information, but you're also creating barriers to misinformation at the same time.

Sylvia Chou:

It's a really good way of thinking about it. I mean, I think it connects to the concept of pre-bunking, if any of you have heard of this idea of using the same inoculation theory, which can be applied either to vaccines or to information, if you think about it. Giving people a certain sense of how manipulation techniques work, give them a little doses of it. And in your case, it's talking about maybe a myth that the patient brings in. You're able to unpack it, help patient understand how to discern truthful from false or inaccurate information. I think it can go a long way. I think going to that critical thinking step with patients or in some other step, I mean, I'm thinking K through 12 scientific curriculum. We don't teach this kind of thing sometimes until graduate school. Like what Angus, you talked about interpreting p-values, that's not even in any sort of scientific education we do.

So I think there are definitely a lot of opportunity to think about how to help people prepare for this information environment. And going back to your comment about relationship, I've been thinking a lot about how polarization and justice fraught environment we're in. There are just so many perceived threats and people feeling a lot of distrust. How can we preach unity? How can we help to build relationships, whether it's in a patient provider, nurse, front desk staff interactions or through other social and community settings. And I think that is going to go a long way in combating long term the impact of misinformation.

Rea Blakey:

Well, we've covered a lot of territory here, and I certainly want everybody on the panel to have an opportunity to make comments or remarks after they hear from the Commissioner Robert Califf, who also has rather strong opinions about medical misinformation and cancer in particular. Tony?

Dr. Robert Califf:

Good afternoon. I'm delighted that all of you're participating in this important conversation on one of the most critical topics in health policy today. And it's one of my top priorities at the FDA. Countering the enormous impact of misinformation on public health. The FDA has a special role in our society because our mission is defined by law, including using science and data to inform the public about decisions relating to their health. Whether it concerns consideration of the evaluation of a particular treatment or preventing distribution of a dangerous product. Or in so many other ways the FDA relies on having the most complete, reliable evidence-based information on the highest quality data and analyses to do our jobs and fulfill our public health mission. Using data to draw an inference about causation of an intervention is a serious and difficult business that we wrestle with every day. It's challenging not only because these are complex scientific and medical issues, but also because sometimes the evidence isn't perfect. But we carefully analyze the data independently, the sponsor and the investigators...

PART 3 OF 4 ENDS [01:09:04]

Dr. Robert Califf:

We analyze the data independently, the sponsor and the investigators, to ensure that our decisions are informed by the most unbiased interpretation of the data and analyses.

Our underlying goal is to provide the public with reliable, truthful, and understandable information, based on facts established through biomedical science so they can make the correct and informed decisions about their health and wellbeing.

Unfortunately, patients and consumers today are not necessarily getting their information or making decisions, based on this information, on an even playing field. The torrent of misinformation, opinion, and too often, disinformation, is confusing patients and consumers and eroding a good deal of trust in science and agencies like ours.

And as consumers and patients are increasingly distracted and misled, their health is being put at greater risk as they are led to make plainly uninformed and adverse choices.

The consequences of misinformation are also linked to a broader problem today, the extremely worrisome pattern in which our scientific knowledge and technological abilities continue to advance rapidly, but our health outcomes are failing.

We're not successfully translating our knowledge into actions that result in better health. This increasing divergence between the pace of knowledge generation about fundamental science and our translation of that science into policies and clinical strategies that can improve health, is amplifying disparities among different portions of the population.

And it's often compounded and accelerated by misinformation, often targeted to people in a way that reinforces their social identities.

Current aggregate health trends in the US are moving in the wrong direction. Right now, we're experiencing an unprecedented decline in life expectancy, with the US currently having a life expectancy between three and five years shorter than our peer high income countries.

Just as troubling is that these disparities are accelerating in ways that involve both persistent historical patterns and some relatively new trends. These declines are due in part to COVID-19, but also to gun violence, overdose, and suicide, that's linked to underlying demographic and societal trends.

And unfortunately, we're also experiencing a broad backsliding related to many diseases that we once had a handle on controlling, or were seeing real progress in treating, including, most painfully for me, as a cardiologist, a tsunami of cardiovascular disease, where we were making so much progress.

In the cancer space, where we've had such enormous gains over the past few decades, the dangers to public health as a result of misinformation are powerful and increasingly problematic. Cancer itself is often poorly understood by the public and both the timing and nature of how it's addressed by a patient, feed into what might be called the magic potion characteristic of the Internet, which can involve false claims and well-meaning, but dangerous advice.

Given the increasing evidence for financial toxicity in cancer treatment, there's good reason to worry that the risk of succumbing to misinformation is growing, especially within social networks with identities that are already known to be susceptible.

While the sharing of inaccurate medical misinformation has likely existed for nearly as long as medicine itself, the threat for misinformation today is far more profound because of the Internet and social media, which makes sharing of inaccurate and misleading resources so much easier, even as it offers what appears to be a semblance of legitimacy.

To cite just one obvious example of the danger, a patient with cancer who falls victim to misleading information on social media and other Internet platforms, may alter or even stop chemotherapy or another life-saving treatment that's been scientifically proven to be beneficial, in favor of an alternative and unproven treatment that doesn't work and can actually cause harm.

The answer, of course, can't be to just categorically trust or mistrust medical information found online or in media. We have to elevate reliable, truthful information, and restore faith and understanding in science and evidence. This is not an easy task, particularly when confronted with a 24 by seven onslaught of misinformation, along with efforts to undermine the scientific work we do.

Combating misinformation is not something the FDA or any one governmental agency can do alone. We need the medical profession, universities, and health systems to wake up about misinformation in general and become much more actively involved.

While some in the medical profession grasp the scope and severity of this threat, and appropriately have sounded an alarm, in large part, health professionals, professional societies, and relevant government bodies have been slow to address this issue.

The title of today's conversation on cancer, so aptly named by Dr. Rick Passer, is quote, Cancer Misinformation: Trust or Consequences, unquote.

Without a doubt, a failure to communicate the truth and support patient's ability to rely on truthful scientific information will lead to increasingly significant and more harmful consequences, both for public health and for the entire scientific and medical enterprise.

Our mission at the FDA is focused on advancing and disseminating the scientific truth for people living with cancer and all people facing health threats, in order to support them in their efforts to extend and improve life. We look forward to working with you on achieving this goal.

Thanks again for being here. And I hope you have a productive discussion.

Rea Blakey:

I think that was perfectly placed in our conversation. We've touched on a number of these topics, but just quick notes.

The distance between a great generation of science and the translation of that information.

Amplifying disparity was another comment that was mentioned by the Commissioner.

The decline in life expectancy is one that I think all of us should really be paying a lot of attention to.

He used the term "magic potion" of the Internet.

And then, also, ultimately, I think the clarion call, that we've got to wake up.

Who wants to go first? Neil?

Neal Augenstein:

Well, that was really quite a dramatic and impactful statement I thought from the Commissioner.

As somebody who has been trying to maintain hope, I think that, clearly, he believes that there is a major risk from disinformation.

I think that the points about... He said the goal was reliable, truthful, and understandable information. I think that if we can all continue to help each other understand what's happening and provide the public with understandable information, I think that is the best way to make sure that there's good information out there for those who seek it.

Rea Blakey:

Angus, you might be the most obvious person to make comments next. Just the connectivity between journalists.

Angus Chen:

Well, I also want to thank the Commissioner for his comments.

I think one of the most important things that maybe journalists have to do in this environment is, like we mentioned before, just make sure that we're reporting information accurately, that we're sort of taking responsibility for the accurate dissemination of useful or newsworthy medical information.

I also kind of think it's important to support journalists at this time, especially as this media ecosystem is shrinking and we're losing journalists, we're losing local newsrooms. So making sure there's funding available for local reporting, for good reporting, for investigative and deep reporting as well, which doesn't traditionally make a lot of money for media companies. That's all really important.

And making sure that journalism as an institution continues to exist, will play a big role in combating this information and getting accurate news and information out into the world.

Rea Blakey:

Eleanor, your thoughts?

Eleonora Teplinsky:

And so I think I echo everything that's been said.

And I would add that sometimes we think that this is a big problem and it needs to be fixed on a global scale, which it does.

But at the same time, we all have a role to play. And I think my message here, to people listening, is that every single one of us has something that we can do. And whether that's a small amount of education, maybe that's correcting a claim, really just keeping that conversation going.

But I will also add that one of the things... Patients come into the office and they say, "I didn't Google. I didn't Google."

And I actually say to them, "Hey, I want you to Google. I want you to read because then you become an advocate," and everyone's an advocate, and I think there's levels of patient advocacy, but you become more empowered, you become more knowledgeable, and then you can actually start to tease out that information, right?

Because you can't go from interpreting a P-value if you don't know what ductile carcinoma is. And so I think we should encourage our patients to educate themselves.

And one of the ways I think that we can do that, as healthcare professionals, is to show up where patients are. And that requires effort and support from our institutions, from professional societies.

And I think ASCO, which is where I do a lot of, you know, is amazing at really supporting efforts of their oncologists to show up online. And I'd love to see that done on a bigger scale.

But I think we all have a role to play, and I'm so grateful that we had this opportunity to have this conversation.

Rea Blakey:

Julie, sounds like a natural lead into you.

Julie Gralow:

Yeah, well, it's clear, and the Commissioner pointed out the amount of cancer misinformation is absolutely increasing. We've talked about that. There's no question, thanks to the Internet, thanks to social media.

And at the same time, the amount of time that healthcare professionals, oncologists, and all of us who treat cancer spend with our patients, is decreasing, due to all the pressures. We have less and less and less time face-to-face with the patient. More time in the electronic medical record and pre-authorizations and documentation.

And so you have all week, all month to get on the Internet and social media and get all of this information, and you have a very limited amount of time, face to face, to counter that.

So we need to rely on the whole team, the team that includes our nursing colleagues, et cetera, but also this team here, the press, the scientists, et cetera.

And I think part of the reason why the misinformation about cancer takes a lot of times is because a diagnosis of cancer is frightening to most people. It is scary and patients are looking and need... looking for and need hope.

And so I'm going to just give a quote that I love. I end a lot of my talks with this. Ellen Stovall, who was the president of the National Coalition for Cancer Survivorship, she lived for four decades with several different cancers, sadly died of a complication of her cancer treatment.

And toward the end of her life, she had this quote in a talk she gave.

"With communication comes understanding and clarity. With understanding, fear diminishes. In the absence of fear, hope emerges. And in the presence of hope, anything is possible."

And that doesn't mean hope that everyone... She wasn't referring to hope that everybody will get a cure, but hope that things will be better. Hope, if you're dying, that you will have a peaceful death, without a lot of pain.

Hope is key. And that's what a lot of this misinformation feeds into.

But we have to remember, that even in situations where we might not have a lot of good alternatives anymore to offer to patients, we have to give them some hope to hang on to. And that's my message.

Rea Blakey:

Thank you, Julie.

Sylvia?

Sylvia Chou:

That was hard to follow Julie. That was so well said. I think hope has a huge role in everything.

And we're not talking false hope. We're talking about meaningful hope and sort of patient-centered, person-centered considerations.

My only message here is that we have a lot of expertise that have not been brought to the table. I think in order to understand the... address the problem, we have to understand it. And I think we have to understand it from a social science and humanities perspective. Even artists and many communicators are out there. It's not just journalists, even though journalists are critical. Your doctor could be an important communicator. Your church leader, your school teacher. There are many people in our community that serve the role of health communication.

And so I really think we need to think about expanding our science to include communication science, because we can't do this with either just clinical science and basic science.

Human beings are messy, right? So the world is messy. There is a lot of conflation of voices and considerations.

Today, we heard about trust, identity, hope. I mean, these things aren't easily measured with just a quantitative study.

So I think we need to be courageous. And I used the word not lightly because this is not easy work. I think we need to have the courage to confront and understand the landscape, before we can fully address it.

Rea Blakey:

So Danielle, I realized that you may not have had prepared comments, but I do want to give you an opportunity because you really worked to pull together this group. What are your thoughts?

Danielle Krol:

Yeah, I mean, what an amazing group that we did bring together. And I was not in that alone. I mean, really it was a team effort to bring everyone together.

But, wow. I mean, just hearing these remarks from so many different perspectives. The science communications perspective. The medical journalist perspective. The oncologist perspective. The CMO of ASCO's perspective, speaking on behalf of oncologists and patient advocates across the country. The patient perspective from Neil. I mean, just what an incredible conversation that we were able to have today.

I learned... I'm a medical oncologist. I do not just work at the FDA. I still continue to see patients. And this conversation today, I learned so much from.

So I'm really thrilled that we were able to do this. And I hope that everyone listening, patients, oncologists, providers, anyone listening, we really hope that you also gained a different perspective about cancer misinformation.

Now, I think people are going to be a little more aware of things that they're Googling and reading and looking at the sources of the information that they're reading.

So I think that this, if anything, has made people more aware that it's a national problem. But we are also in this together trying to find ways to communicate better, to come together as a team to make this effective.

Rea Blakey:

So Rick, we know that you said that the FDA is not hiding a cure for cancer. Want to highlight that again. When it comes to misinformation, that's a big one.

What other final comments would you offer to those who have been watching this program?

Dr. Richard Pazdur:

So I've been in the field now for 40 years plus. So I saw cancer therapies evolve over this period of time, with many diseases that had no therapies, to diseases being transformed into those that have cures in it.

But I've also seen differences in the society and how it has dealt with cancer.

In the '60s, in the '70s, many times people would not even talk about cancer. And in many ethnic groups, I was asked, when I was taking care of people's families, not to tell relatives that they had that diagnosis.

Our conversation on cancer had been transformed in the '70s by some people having cancer that came public with it. The most famous probably being Betty Ford, that kind of started this dialogue.

But one of the things that we have to deal with in dealing with cancer is uncertainties. What is the prognosis of a person? We could give what a general population is, but what is that for an individual patient? Am I going to be cured of this disease? How long will I live with this disease? Will this therapy work? What is the right therapy?

And here, again, we have a lot of information out there. Many times it's difficult for people to get their hands around it.

And one of the most important bonds that we have is our trust with our physicians. And that is a sacred trust. And if we do not have confidence and trust in your physicians, I've always told, even family members when I've had this discussion with them, find another doctor. You have to have that bond with your oncologist when you're working through a life-threatening disease, that he's operating, or she is operating, in your best interest, and that you have an open dialogue to discuss all of these potential issues that we have brought forth here.

We're dealing with a very high degree of uncertainty, and we have to have this dialogue on what it is on an individual basis rather than a population basis because we're not treating a population with cancer. But at the very end, we're treating a person with cancer.

And that personal interaction and that personal trust has to be maintained with the practicing oncologist.

And I'd like to reiterate, his staff, which includes pharmacist, staff, physician assistance, and they all play an equally important role in establishing that trust with the medical team.

And I'd just like to leave it at that.

Rea Blakey:

Excellent.

I want to thank the panel. I've learned a lot. And I'm always fascinated by the differences of perspective. They all seem to sort of... can gel around the same aspect of we're here to make life better for people who are facing this very difficult challenge in their lives.

And the approach really has to come down to science-based evidence and us talking to one another so that we do have trustworthy relationships.

And I'm just going to take just a detour, just back to what Sylvia said, regarding the fact that everybody has a role to play and artists and families and people who work in soup kitchens and people who are teachers. And that K through 12 set of individuals in our nation is an extraordinarily influential group. We wouldn't have the kind of activity, if you will, on social media, if not for those young minds, which are rather nimble.

And we're just trying to keep up. So the idea that everybody has a role to play is extraordinarily important.

And this is my plug for our next conversation on cancer, which takes place on June 15th, which is a Thursday, from 2:30 Eastern to 4:00 PM, where we're trying to get more people to have a better understanding of the importance of that trust and working with community and establishing those bonds that help other people live better lives when it comes to the possibility of a cancer diagnosis or surviving.

And the idea is, is that if we help each other in every aspect, we'll all be better.

So we hope that you will join us on June 15th for the next conversation on cancer, which is specific to National Black Family Cancer Awareness Week, because we are interested in making sure that all communities, those underrepresented and underserved, benefit from the work that we all do.

So we're going to focus on that particular item. We have a social media campaign that'll run that week, and we hope that we will see all of you back on June 15th, it's a Thursday, from 2: 30 to 4:00 PM Eastern, where we have another really intriguing conversation.

Thanks to the panel. Thanks to the audience. Everybody, have a great day. Take good care of yourselves. Bye-bye.

Dr. Richard Pazdur:

Thank you.

Eleonora Teplinsky:

Thank you.

Sylvia Chou:

Thank you. Bye.

PART 4 OF 4 ENDS [01:30:41]