Cancer information on social media: Potential value, but take ‘with a grain of salt’
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An analysis of gynecologic cancer content on TikTok provided new insights into the advantages and disadvantages of patients using social media.
Most information on the platform regarding gynecologic cancers is of poor educational quality, findings published in Gynecologic Oncology showed.
“There’s a lot of value in social media. It offers community, and it normalizes a lot of symptoms these patients might be dealing with,” researcher Laura Chambers, DO, gynecologic oncologist and assistant professor of obstetrics and gynecology at The Ohio State University College of Medicine, told Healio. “There are some helpful tips and tricks, and it can also be funny and relatable. However, you have to take everything with a grain of salt. If a patient sees or hears something they haven’t been told by their provider, they should talk to them about it.”
Racial disparities in gynecologic cancer also extend to social media, investigators found, with content posted by South Asian or Asian/Pacific Islander women deemed of higher educational quality than content posted by Black, Hispanic/Latino or white individuals (P = .0013). This reveals an opportunity to create more diverse content to support racial and cultural experiences in treatment, researchers concluded.
Healio spoke with Chambers about the findings, the potential value — and drawbacks — of cancer-related information on social media, and what oncologists can do to position themselves to their patients as nonjudgmental sources of reliable information.
Healio: What inspired you and your colleagues to conduct this study?
Chambers: My interest in social media started a couple years ago. I happened to be looking at certain hashtags on social media one day, and I was amazed at the stories of patients I saw. I thought it was so brave how some of these women were putting parts of their cancer journey out there — their surgery, their recovery or how they were feeling with chemotherapy. I felt this was something people needed to understand.
TikTok is growing. It has 1 billion users and has really taken off. Patients seem to enjoy it — it’s funny, there’s dancing and singing, and it’s interactive. I happened to look at some different search terms within the TikTok platform, and I realized we needed to study this.
Healio: How did you conduct this study?
Chambers: We looked at the top 100 hashtags for each cancer. In my practice, I care for cervical cancers, uterine cancers, ovarian cancers, vulvar cancers and gestational trophoblastic disease. We looked at the 100 posts that had been liked or shared the most. Then we determined whether the post was educational in its content, or if it was simply story sharing. We also looked at some of the characteristics of the poster or content creator.
We had two study investigators assess whether a post was educational. If there was a discrepancy in their opinions, a third person broke the tie. If we determined a post was educational, we then looked at how reliable it was.
For posts that were educational in nature, we used a system called the DISCERN score to evaluate the quality of written information about treatment choices — 5 is considered a good score and 1 is a poor score. We found the median score for these posts was 1 — so, basically, the majority of posts had very poor evidence and reliability.
For posts that were not educational, we looked at what people were posting about. What stories were they telling, and what information were they sharing? It was fascinating, as many patients with these types of cancers go online to talk not only about side effects, but also about things related to body image, hair loss or what it is like to be a mother during cancer treatment. It was the kind of thing you can’t always get at a physician’s office.
Healio: What did you find in terms of the value of this type of posts?
Chambers: There is potential value for a patient who might want to hear an encouraging or inspiring story about their particular cancer. Some people share nearly every detail of their surgical recovery, while others share tips that may help others. Some people talked about waiting for scan results and dealing with “scanxiety.” This type of post really normalizes many aspects of cancer. Cancer can be isolating, and some gynecologic malignancies are rare. In that sense, TikTok can bring these women together in a very special way.
Healio: You looked at themes of posts by race of the people who posted. What did you find?
Chambers: This wasn’t initially an intent of our study, but we found some differences. For example, Black women were more likely to talk about alternative therapies or refusing therapy. They also were more likely to talk about being a mother, or about pregnancy loss and infertility. This suggests there may be some kind of unmet need within that group of patients. It leads us to wonder why they are talking more about alternative therapies. Are traditional therapies not being discussed properly?
We found Asian women were more likely to talk about treatment toxicities and the symptoms they were having. Hispanic women were more likely to talk about body image and hair loss, and how difficult that can be. We found these differences to be interesting and noteworthy. We all have unique values and things we struggle with more than others. Obviously, this was a very small group of women. However, I think it’s an important thing to remember.
Healio: What can oncologists do to guide their patients or survivors of gynecologic cancers toward quality content on social media?
Chambers: The main thing for oncologists is to make sure patients feel comfortable coming to them. A lot of questions arise — on social media and elsewhere — and there are a lot of fallacies about cancer care and treatments. We have to be able to have an open dialogue with patients so they feel their concerns are being heard.
We know patients are using these resources on social media, so being able to provide them with good-quality resources is important. The hard part about that is there are not many of them. I usually tell people to direct patients to the Society of Gynecological Oncology, which has great resources. Nonprofit groups also can be amazing resources. Oncologists should be open to the questions that may arise and know about some of these resources that can help guide patients.
Specific to social media, platforms like TikTok will not be part of the journey for all patients; however, for young patients, this can really bring people together. A person’s life truly changes when they have cancer, and some young patients may not have people in their immediate circle who are going through these changes. Social media can help normalize a patient’s experience. A few cancer-related social media accounts I follow are very funny — they bring humor to tough situations, and I think that’s what some people need. This can be especially helpful if a patient’s family doesn’t know the right way to normalize a situation, or if they don’t feel comfortable doing that.
So, I truly think there is a lot of positives to it. In the coming years, my hope is that we will be able to guide patients toward formalized communities for these issues. This is a very new space. The goal of our study was mostly to get it out there that this is happening. We want people to be aware of it. – by Jennifer Byrne
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For more information :
Laura Chambers, DO, can be reached at The Ohio State University, 3691 Ridge Mill Drive, Hilliard, OH 43026; email: laura.chambers@osumc.edu.
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