Expert: The Impact of Misinformation on Gynecologic Cancers Through Social Media

Laura Chambers, DO, drives a conversation surrounding the impact of misinformation on gynecologic cancers that is spread through social media and where patients can receive accurate information to stay informed.

Pharmacy Times

Can you introduce yourself?

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Laura Chambers

I'm Laura Chambers. I'm a gynecologic oncologist at The Ohio State University James Cancer Hospital.

Pharmacy Times

When did you notice the spread of false information about gynecologic cancers on social media?

Laura Chambers

In taking care of my patients in my practice, we talk a lot about resources that they can go to for medical advice or support or community. My interest in this actually started a few years ago. In the patients I care for, they are women with cancer. There's a very wide age group — I take care of some cancers that involve pregnancy in the placenta, and those can occur in young woman, that's actually where my focus on this started. I did a study a few years ago looking at Instagram, and the things that women post. What we found was that this is wide variety of things, but we found that there was a lot of misinformation. That really inspired my interest in this topic. We decided to choose the TikTok platform to evaluate this because it's really become the most popular social media platform with about a billion users, that was kind of a natural place to start. I talk with patients really often about social media and things that they hear in their communities, I spend a lot of my time in my practice educating. I think this for me was an opportunity to be able to look at what's out there and provide education in a different way.

Pharmacy Times

What misinformation have you seen that is being shared that women should be aware of? Where do you believe these creators are getting their knowledge before sharing it on social media platforms?

Laura Chambers

There was really quite a variety of different things that were being posted on TikTok. A lot of patients were posting things about their diagnosis and their symptoms. I thought those were really valuable because they were sharing their stories and I think those can be really helpful for others. We did see a number of posts about alternative therapies or ways to treat your cancer and non-traditional ways. Those were especially common in patients that had cervical cancer, or vulvar cancer, that was probably the biggest thing. With regards to the misinformation, we did evaluate and look at the creator's — if they were a healthcare provider or a patient, and then looked at the differences in the educational content. We did see even among the health care providers, that there was gaps as far as the accuracy of the information and kind of the comprehensive nature of the education being shared.

Pharmacy Times

Where do you believe these creators are getting their knowledge begore sharing it on social media platforms?

Laura Chambers

It's really hard to know. I think one of the things as a cancer doctor is there's a tremendous amount of old wives tales and things that are just passed down. There's a lot of beliefs that people have about cancer therapy and cancer, and I feel like a big part of my job is to talk about those things with patients. Sometimes even with a discussion, people believe what they want to believe.I think all it takes is someone in a family to have a bad experience or have something that really shapes the way people feel. I think a lot of it is probably passed down through families, or just culturally, too. I think that people do their research, and I really applaud that, but many of the resources out there for patients may be above their medical level, too. While they think that they're reading a good source, it may be something that they're not quite understanding properly. I don't think all of it is necessarily intentionally to put out bad stuff, I think it just shows that there's an opportunity to really educate people well.

Pharmacy Times

Have you seen the direct impact of patients accessing this misinformation, following a recent diagnosis?

Laura Chambers

I find when I meet someone that has new diagnosis of cancer, I try to answer all their questions. People do ask me a lot of questions and there are things that come up that are old wives tales, or things that they've read. I hear a lot about people being worried about eating sugar, because sugar fuels cancer— I hear that one most days in the clinic. There's a lot of people that are concerned about minimally invasive surgery or doing a surgery that spreads cancer, those are things that come up often. Interestingly, we didn't see as much of that on social media, and we didn't see a lot of people talking about those things, but those are definitely things that are out there. I think a lot of patients with cancer, they feel really isolated. One of the things that's really unique to women with cancer is women take care of others, and we have a lot of things in our life that we do — for many women, that's really hard. I do find that social media does have a lot of positives, it also can build community, people can do some important advocacy work and meet others with the same diagnosis. There's definitely a lot of positives and I do still encourage people to look at these platforms, but really just to be careful of the information that they're consuming.

Pharmacy Times

Research has provided that Black women face a higher risk of endometrial and cervical cancers, yet 75% of content is being shared by white creators. How should women who are higher risk know what information should be trusted?

Laura Chambers

That's such an important question. One of the ways that we did this study was we evaluated the top 100 posts of the post that had the most amount of likes and shares. We found of those posts, most of them were by white creators. It shows that even in what people are looking at, there's this disparity that exists. That's something that we're trying to figure out how to explore. Now from a research perspective, what are the differences in some of the things that people need, based upon their race and their ethnicity? Because when we evaluated the content themes, we certainly saw that there were differences. That's a great question, it's something that we're trying to explore more.

Pharmacy Times

Where do you suggest women should get more information on gynecologic cancers, rather than on social media?

Laura Chambers

Obviously, first thing is talk to your doctor. But there are many social media platforms or accounts for professional societies. For example, like gynecologic cancers, we have the Society of Gynecologic Oncology — they have a social media platform. There's the American College of OBGYN — they have social media platforms. They put out as a lot of data and there's various campaigns that they'll run; I think those are really great places to go to other reliable resources. Other governmental things like the NIH, and the National Cancer Institute, those are good places to go. But this is definitely something I'm really interested in working on, is trying to figure out how we can make this information accessible for patients.

Pharmacy Times

Research has provided that adults under 30 years of age are most likely to get their information and news on TikTok. How can information on these platforms improve or shift to other sources?

Laura Chambers

I think it's, it's going to take a lot. I think there's probably no one right answer. One of the things with sharing medical information, is there's a lot of barriers — you have to have the time, you have to have the resources to film, oftentimes certain institutions may not want their providers on tape — there's just a lot of this, it's a really complicated thing. I think it's really going to take a lot for people to start putting out good content, and that's something we're trying to look into more. I think what's really important is obviously talking to your doctor about places that they would recommend. First any questions or things that come up that you may read through social media, again, go to your doctor or your advanced practice provider —those that's really important. But what is really nice, as many know, posters will link to kind of a primary literature source. So maybe a manuscript, a news article, a publication, a clinical trial, and I think those are really helpful. It gives a person that's trying to inform themselves, the best resource to go to read more.

Pharmacy Times

How can pharmacists help combat the misinformation and provide reliable resources to patients?

Laura Chambers

That's a great question. I think the biggest thing is understanding what's out there, making sure that you're accessible to patients if they have questions. I think patients can sometimes be nervous that we're going to judge them if they ask simple questions. Just using very patient forward non-judgmental language— those types of things are helpful. I think that's really what I would recommend.

Pharmacy Times

Is there anything you would like to add?

Laura Chambers

This study for me really opened a lot of doors in terms of ways that we can educate patients better. In medical offices, we're really busy, we see a lot of patients a day. If someone has a new cancer diagnosis and we get 30 minutes to talk to them, that's not enough. Of course, it's natural that patients want to go somewhere else to learn and inform themselves. Many patients have computers, social media and phones at their fingertips. Of course, going right to Google and these platforms, it makes sense, I mean, I do the same thing. I think it's just going to take a significant effort from healthcare providers to really inform patients and put out good content. I think a lot of this is also at institutional levels to, like hospitals, being able to have a presence, putting out content and post during Gynecologic Cancer Awareness Month, Breast Cancer Awareness Month, those types of things. I think that's a good start. But this study was exciting for me because I think it just shows how much better we can do. There's a lot of room for improvement and I'm really excited to be able to add more to this field.