Read Time: 4 minutes
Video transcript
I know that there's still a lot of work to be done in these spaces. And I'm grateful to be involved in that work, so hopefully in the future, people don't have to lose family members.
My name is Skyler Johnson. I'm an assistant professor at the University of Utah School of Medicine, as well as a radiation oncologist in the Department of Radiation Oncology.
Can you tell us about your research?
Yeah, so some of my recent research has been surrounding the information environment that impacts cancer patients. So, some of the research that we've done has been evaluating social media online for the accuracy of information that patients are encountering, whether there's potential for harm.
What are the dangers of getting cancer information from social media?
So in our research, we actually learned that one out of every three social media articles about cancer contained not only misinformation, but harmful misinformation. And this is what the data showed, but I will tell you anecdotally, we see this in-clinic. If you're to talk to any cancer doctor, unfortunately, they encounter patients who will make decisions that are not supported by the best scientific evidence. And sadly, we see those patients return with cancer that has either progressed to the point that it's not curable or they'll die from their cancers. And those are the types of cases that keep physicians up at night.
What steps can people take to make sure they’re finding accurate information online?
I think one of the things that we've published on is actually, this somewhat crass but useful mnemonic device called the CRAP Score, and it's the Cancer Claims CRAP Score. And we use the mnemonics from the word CRAP, to figure out whether the information that they might be looking at is accurate or not.
The “C” stands for claims too good to be true or conspiracies. So, if you're reading about something online, and it's bringing up 100% cancer cure rates with no side effects, then that's something that might give you pause. Similarly, you know, if there's conspiracies, chemotherapy-only poisons or radiation-only burns without during your cancer, then I think that should give pause as well.
The “R” stands for requests for money. And oftentimes, if you're on a website or a blog, you're reading an article and it's saying, “hey, this thing cures cancer and has no side effects.” And all you have to do is pay for this expensive consultation or pay for this supplement online. Then again, that's something that should raise some red flags.
The “A” and the “P” in the score, “A” stands for anecdotal evidence and anecdotes are just stories. They're not necessarily data. And oftentimes, will just draw on a testimonial, for example. And sadly, oftentimes, testimonials from these types of websites are created, not from real people or real individuals, but from those unscrupulous people who stand to benefit from those testimonials. So, the “A” is anecdotes, and then the “P” is publishers. You want to make sure that you're identifying a reputable publisher. And that typically comes from websites that are .edu, .org, or .gov. And oftentimes, if you're reading an article, and you can't even see whether the publisher is a physician who's credentialed to be providing that type of advice or a PhD scientist to be providing that advice, again, red flags.
We know cancer is personal—how is it personal for you?
I think cancer is incredibly important to me, personally, because I have individuals in my life who have been impacted by cancer. My wife was diagnosed with cancer during my second year of medical school and fortunately has since been cured because of the medical advancements that we've made. I've seen the flip side of that. I have a sister and brother-law who died of cancer within two weeks of each other. My sister died of pancreatic cancer and my brother-in-law died of brain cancer, and we have since adopted their four-year-old son. So, I see where medical advancements still need to be made. I'm grateful to be involved in that work. Hopefully in the future, people don't have to lose family members.