Should People Trust What They Read About Mesothelioma?

Is the internet trustworthy? That’s a loaded question, one without a clear‑cut answer.

Zoom in a little closer: Is the internet trustworthy for researching cancer? It’s a case‑by‑case basis. Some websites are trustworthy.

Unfortunately, many are not.

The Journal of National Cancer Institute published an eye‑opening report about the reliability of cancer articles, blogs and other web pages. The report is based on research conducted at the University of Utah, which coincides with multiple surveys and quotes from medical professionals. Medical News Today published an enlightening article bringing all of the research together.

According to the University of Utah scientists, one‑third of cancer articles contain misinformation. Almost as many contain “harmful” information.

“It’s not surprising,” said Dr. Raja Flores, the director of thoracic surgical oncology at Mount Sinai Medical Center in New York City. “It sounds accurate.”

Dr. Flores is a mesothelioma specialist with as much knowledge of this cancer — and the misinformation surrounding it — as anyone.

“I don’t think it’s always purposeful,” he said. “I think a lot of blogs aren’t the experts writing them, so (the science) gets lost in translation.”

This is especially important for people with mesothelioma, one of the rarest cancers in the world. Due to the scarcity, there are few doctors and websites with the expertise and resources to provide accurate information.

This is why patients and loved ones should be dutiful in finding the best sources.

 

Research Into Quality of Cancer Content

The report focused on how trustworthy cancer content is on the internet. It also showed how and why misinformation spreads through social media.

Both pieces of data offer insight into how cancer patients, including people with mesothelioma, can be influenced to make harmful decisions.

“My experience is that mesothelioma patients come in more hopeless than others just because of what they read online,” said Dr. Hassan Khalil, a thoracic surgeon with Brigham and Women’s Hospital. “It’s true that mesothelioma is a rapidly progressing and deadly disease. The survival is measured in months due to untreated patients. A lot of that information is decades old and doesn’t take into account the changes in chemotherapy, surgery, immunotherapy and multimodal therapy.”

Two cancer experts at the University of Utah looked through 200 popular social media articles. These were split into 50 articles each about four common cancers: lung cancer, breast cancer, prostate cancer and colorectal cancer. The researchers used Facebook, Reddit, Twitter and Pinterest to find these articles. All 200 were posted in either 2018 or 2019.

Of the 200 articles:

• 75 came from traditional news outlets (such as newspapers or TV stations)
• 83 came from nontraditional digital outlets
• 34 were from medical journals
• Two were from personal blogs and six were from crowd‑funding websites

The team at the University of Utah asked two panel members from the National Comprehensive Cancer Network to review the articles. There were far too many considered untrustworthy:

• 65 (32.5%) contained misinformation
• 61 (30.5%) contained harmful information

Those numbers aren’t the only troubling statistics in the report. The articles with misinformation had higher engagement on social media than factual articles:

• 2,300 shares (median) for the unreliable articles
• 1,600 shares for the correct articles

Other surveys and research shows the same: falsehood spreads much quicker than truth on the internet. The reasons are plentiful, and the Medical News Today article named just a few:

• Aligning with personal beliefs
• Distrust in the healthcare system
• Preference for alternative therapies
• Falling victim to hope, belief in curative treatment that isn’t effective

According to the Pew Research Center, the majority of Americans use social media. KRC Research found that 73% of Americans rely on the internet for finding healthcare information. Most of them are looking for information on treatment and illness symptoms, which falls in line with what most mesothelioma patients seek.

 

Fighting Against Misinformation and Harmful Content About Mesothelioma

Reading an article or a web page about mesothelioma isn’t a lighthearted activity. It isn’t something to “pass the time.”

This is often life and death. Patients and their loved ones need accurate information from trusted websites. They are dependent on receiving relevant data about new and existing treatment options, survival rates and more. They don’t benefit from pie‑in‑the‑sky treatment options, either, and many doctors have to provide tough answers to questions veiled in false hope.

“For most patients I see, I’m their third doctor,” Dr. Flores explained, noting they see a general physician and maybe a general oncologist before him.

“Most patients ask for certain treatments. They read websites or a story about someone who survived thanks to a treatment. So they ask about it. I sometimes have to say, ‘It’s not in your best interest based on your specific case scenario.’”

Then there are cases where the patients assume they have no hope — another falsehood about mesothelioma.

“There are some cases where they get misled,” Dr. Flores said. “For instance, some websites say there’s no cure and there’s no hope, so the patient doesn’t get treatment. Meanwhile, they have the slow‑growing type of mesothelioma and they would have benefited from treatment.

“There aren’t a ton of those cases, but they do exist.”

Dr. Khalil stresses it’s a case‑by‑case basis. He can quote statistics, but “it’s just the average” and “every tumor is different.”

While one case may be stage 4 mesothelioma, another may be localized disease with plenty of treatment options. Those conversations are different, but the patients may read the same articles with the same misleading messaging. That can be quite harmful.

Fortunately, the expert specialists are on their side. Dr. Khalil provides his patients with either print literature or Google search terms to find trustworthy articles online.

“When patients come to me, I look at the scans. All of the imaging data is very helpful in noninvasively staging the patient,” Dr. Khalil said. “We look at lymph node metastasis and that helps determine the stage. So we need that information … to get a better picture.

“So what I tell patients is let’s do the work. A lot of patients appreciate the extra several months or one or two years this can add to their lives.”

How Mesothelioma Guide Delivers Accurate Information

Mesothelioma Guide takes extra steps to ensure its content is as accurate as possible. We review all content published for medical quality. Our team includes a registered nurse to ensure accuracy and thoroughness. We then review the content for patient sensitivity.

We’ve even taken steps to have surgeons and other mesothelioma specialists review our content for medical accuracy and completeness. In short, we are fighting against misinformation and harmful content by ensuring our website is trustworthy.

Lastly, before making any decisions about treatment, we strongly encourage all patients to speak with a doctor. Mesothelioma Guide is a valuable resource to compile thoughtful questions when you do meet with a doctor. We are a starting point, but we recommend always relying on a medical expert for guidance in a decision.

If you’d like to speak with a mesothelioma doctor, we can help make that happen for you. Contact our patient advocate and registered nurse, Karen Ritter, for help with scheduling a consultation. Email her at karen@mesotheliomaguide.com and she can walk you through finding the right doctor to meet with about your options.

If you see something published on our website that you have a question about, email our lead content writer. Devin Golden can be reached at dgolden@mesotheliomaguide.com.