The Amount of Misinformation Online Can Lead to ‘Horribly Detrimental’ Results in Patients With Cancer, Says Expert

Sifting through the mounds of available information online regarding cancer can be an extremely daunting task for many patients.

Couple that with the fact that many are often looking to consume news and information quickly, trustworthy sources may be hard to spot.

In fact, in recent years, both the World Health Organization and United Nations declared that society is facing a crisis known as an “infodemic.” Here, there is a tremendous amount of information from many different sources readily available to the public. While some of the information may be accurate, other sources may push inaccurate material that may be harmful to the public, especially those receiving treatment for cancer.

The Risk

The amount of misinformation about genetic testing alone Ellen Matloff said she sees day-to-day is “enormous.”

Matloff, who is the CEO of New Haven, Connecticut-based My Gene Counsel and a certified genetic counselor, explained that there are many articles available that don’t get genetics right and spread misinformation.

“The amount of misinformation out there is just startling,” she said in an interview with CURE®.

Misinformation is alluring to patients with cancer because it’s easy to digest, according to Matloff. She explained that people want information quick, with no back story; however, the back story is often where the correct information is.

“I think that everyone’s moving so fast, and we want to read a tweet on Twitter and know the whole story,” Matloff said. “I would say that rarely happens. It rarely happens in health news, or in regular news. We have become a society of wanting it all in a tweet and unfortunately that’s not the way it happens.”

Matloff added that only consuming misinformation can be “horribly detrimental” for patients with cancer.

For example, some people may have a family history of cancer which could warrant a genetic testing. However, they fail to seek out a specialist because they did a popular, at home, ancestry test that can be bought online.

Some patients, she said, may need to undergo proper genetic testing to start preventative treatment, or be screened early. But instead, most people opt for what Matloff called “gen-tertainment” meaning genetic entertainment, which they may assume will give them all the results needed to make treatment or screening decisions.

“It can be fun, and it can be entertaining. But is it going to answer your medical question? I don’t think so,” she added. “(It can be serious to misinterpret information), it could cost someone their lives. I know that’s an extreme example, but I think it’s a fairly common example.”

Finding the Right Information

It can be challenging to identify what information is accurate and what information may be pushing an agenda, she said. Information that is full of medical jargon can be difficult for patients with cancer to identify, and they might not know what applies to them.

In an effort to combat misinformation, Matloff recommended that patients with cancer ask themselves a few questions when they find information online:

• What is the source of information? Is this a video just shared on YouTube or Facebook?
• Who is this person? Is the person presenting the information a reliable source and expert in the field?
• Are they trying to sell something?

In addition to these steps, FORCE, a cancer advocacy group, has developed a digital health literacy tool to help combat misinformation on the internet regarding cancer.

“We noticed that a lot of people in our community would be chattering about new science (data) that is in the news, but they didn’t know if it was relevant to them,” said Sue Friedman, executive director of FORCE, in an interview with CURE® “And that is what led us to create a new tool to help solve this issue.”

The new toolkit and quiz may help patients more easily recognize online health misinformation when they come across it.

“The idea is that can we just make a start at getting people to think about the information before they pass it on or use it to make their own decisions,” she said. “And (the goal is to )empower them with some tools so that they can have a conversation with their health care professionals about the science and feel confident in that conversation.”

The toolkit, she explained, provides patients with three important questions to ask and five red flags to look for when finding information online, followed by an interactive quiz.

Matloff said she used the tool and took the quiz and found it very helpful. She advises patients to continue to ask, when they find information online, where it’s coming from and if it’s a reliable source.

“I think when people are on Facebook and are seeing posts by friends, I would say that until proven otherwise, all of that is hearsay,” Matloff concluded. “Go to the trusted health sources, like National Cancer Institute or the CDC, most of those places have information made for the average consumer. (Patients) aren’t going to have to sift through high-level medical information. Start with those trusted sources and stay away from someone trying to sell you something.”

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For more information on the toolkit, visit https://www.facingourrisk.org/BOAST/