Misleading Health News: A Q&A With Susan Jacobson, PhD

In May 2015 Susan Jacobson, PhD, had just moved to Miami when she was diagnosed with metastatic HER2-positive breast cancer.

In the first few months after diagnosis, Dr. Jacobson looked for information online. What she found was overwhelming, misleading and scary. Eventually she found reliable information and support. She went on to help found a Facebook group for women with metastatic HER2-positive breast cancer where they discuss treatments and how to deal with side effects.

Dr. Jacobson, a professor of journalism at Florida International University, had researched social media and politics before breast cancer. After her experience trying to find good medical information online, she saw how harmful misleading medical news could be. Since then, she has been working with her colleague, Weirui Wang, PhD, on research about fake and misleading health news online.

Dr. Jacobson spoke with LBBC’s content coordinator, Madison Hughes, about her experiences and research.

MADISON

Why is misleading health news created? What is it made up of?

DR. JACOBSON

There are different players with different motivations that [spread] fake health news. Usually, the motivation is financial. On one hand, you have researchers, medical centers, drug companies doing research on new things. When they get results, they want to spin them in the most positive way possible. On the other side, there are small [web]sites. They’re not real publications, they’re internet fiction. Their main motivation is to get clicks. They can take a perfectly reasonable press release and it becomes distorted. One example: the University of Windsor in Canada discovered some cancer-fighting properties of dandelion root. And they said, “We’re going to do some investigation into dandelion root.” And they put out a press release. And then [a website] gets ahold of it and the headline becomes, “Dandelion root more effective than chemotherapy, kills cancer in two days.” And that’s very common.

MADISON

How is it harmful to people with breast cancer?

DR. JACOBSON

There have been a few news stories about women who were diagnosed with breast cancer who chose to forgo traditional treatment for natural cures, then died or became metastatic as a result. Part of that is a culture that wants to believe that there’s something out there other than chemo. Another [thing is that research shows] people who are first diagnosed remember about 20 percent of what they are told. These people are vulnerable to misleading information.

MADISON

How is this misleading information spread?

DR. JACOBSON

One of the things [misleading news sites] do is borrow on the name of a legit news organization. And if they go through the trouble of mimicking a real news organization’s website, sometimes they’ll take some care with the proofreading. They have all these pieces of whispers and conspiracies, these semi-true and maybe-not-true things, and they layer it together into this very suggestive story. It’s the layering that makes it sophisticated. We don’t have very strong health journalism, so that can make [people] susceptible to sharing misleading information.

MADISON

If it’s so easy to be misled, how can the average person spot it?

DR. JACOBSON

I think we need more awareness. People have to know that health news and health information can be misleading [or] can be partially true. People don’t know that. People need to know there are places they can go to get more accurate information. Some sources are better [than others].

MADISON

With the national discussion happening about misinformation and fake news, why is your focus on fake medical news so important right now?

DR. JACOBSON

Misleading health information is often more pervasive. If you’re a Democrat and you see something terrible about President Trump, even if it’s from a squirrely news source, you might be inclined to believe it. Or if you’re a Republican and see the same story, you’re inclined to disbelieve it. Meanwhile in health news, people see something like, “Drink lemon every morning!” and they don’t have the same critical tools to approach that.

MADISON

How has your experience with breast cancer inspired and influenced your work on this project?

DR. JACOBSON

Before I was diagnosed I had never been sick. I didn’t know what stage IV meant, I just didn’t know what it was. I went on the internet first thing and the information on there is overwhelming. I was in this fog. And while I was trying to find my way I found the right [Facebook] groups. I started to see that there was value in talking to other women about what’s going on because there’s all kinds of crazy [stuff] out there. Then the 2016 election happened, and the story of how different parties with different interests were creating misleading information on the internet. I could see some of that coming through the cancer groups. That’s when I decided, “Let’s take a look at fake news.”