From PWN Co-founder J D Faccinetti – In a recent paper from the National Academies of Science of the United States of America, “The spreading of misinformation online”the authors made quite a dire statement. “Digital misinformation,” the report stated, “has become so pervasive in online social media that it has been listed by the WEF (World Economic Forum) as one of the main threats to human society.”
The article goes on to describe the many mechanisms that cause false information to gain acceptance and the difficulty that exist in correcting these falsehoods once an individual adopts them. Of note was this paragraph included in the researcher’s conclusions:
“Our findings show that users mostly tend to select and share content related to a specific narrative and to ignore the rest. In particular, we show that social homogeneity is the primary driver of content diffusion, and one common result is the formation of homogeneous, polarized clusters. Most of the times the information is taken by a friend having the same profile (polarization)––i.e., belonging to the same echo chamber.”
It is against the background of this research that we focus our (PWN) concern with the way that misinformation sometimes spreads through some online patient support groups like wildfire. Some groups are better than others at dowsing the flames, but others seem to fan it. The danger is that the great work that patient group advocates do to organize, educate and support patient’s well-being through social interaction and the exchange of experiences and ideas is often being hijacked by a few bent on spreading all kinds of information, no matter how dubious and unsupported. “We are very careful to encourage our members to seek scientifically sound information, that is why so many people follow our group,” said Jill Sisco who’s president of the acromegaly community a leading advocacy group. “Our group members are well informed and provide very needed support and insight to the group. We promote healthy, enlightening discussions and we welcome differences of opinion that lead to awareness and education, but we absolutely do not encourage pie-in-the-sky schemes and bogus information” she added.
A recent PWN article on rogue doctors and misinformation prompted lots of discussions and a very eloquent comment from one of our readers, a patient, on what motivates patients to search for answers. It explains very well the way many people feel.
There is so much misinformation out there, and no one is held responsible. With that being said, if there was not a market for it, it would not exist. Some people feel so horrible they are desperate for anything that is going to make them feel human again. Not everyone has access to great doctors. I have talked to people who have been told by their doctors to eat less and exercise more as a treatment for Cushing’s. Believe it or not, there are Doctors that order [TSH] labs, when the patient has no pituitary gland, to evaluate their thyroid function. Click here to read the entire PWN article “Listening to the Voice of the Patient”
Another important consideration is the amount of stress that this misinformation can potentially cause. Consider a recent Facebook post from a person who uploaded several MRI images very worried that there was a pituitary tumor, and asked the group if they could see the tumor. Several people flooded the FB post with tumor sightings and dire predictions of size and position. It caught our attention because of the responses it generated.
Not one of these images show the pituitary,” wrote Dr. Lewis Blevins, a world-leading neuro-endocrinologist and Pituitary World News co-founder about the Facebook post. He added, “Clearly FB is not the place to come for professional advise regarding MRI studies as this is the second example today where the support group weighed-in grossly incorrectly about someone’s MRI. Having been a pituitary physician for 30 years …my advice… for what it’s worth… everybody relax … let the professionals advice you… and, if you don’t have any training or expertise in reading MRI studies, refrain from providing interpretation. There is a point where misinformation can be harmful and anxiety provoking [to the person seeking the information]. What kind of support is that in the end?
Most of us have biases that are in part driven by the circumstances in which we find ourselves. Bias can distort thinking and beliefs even in our search for information. Desperate sometimes to improve our quality of life, we will often believe, or at least consider anything that is published on the web or somewhere else, or shared by a group, often disregarding its source. And even our search for that information is biased by our perceptions and beliefs. So how do you deal with it and fight these biases? How do we begin to understand the feelings and perceptions that cause a person to ask a group of like individuals, we guess largely unqualified, if they can see a tumor, instead of asking a trained professional who spends most of his/her career honing skills to understand these highly complex issues and images.
Experts believe that the simple attempt to try to understand our biases, in other words, how our perceptions shape our beliefs and the mechanisms that affect them, helps a great deal to fight and ultimately defeat those perceptions. For us, the editors and contributors of Pituitary World News, it’s about formulating and applying communications strategies based on science and accepted scientific methods and trying to, whenever possible, recognize and point out misinformation.
So, what do we know about bias and perception? Consider a recent NPR episode from its popular TED Radio Hour weekly program. This particular episode discussed how bias distorts our thinking, our listening, our beliefs, and even our search results Experts tackled the subject and provided their opinions and ideas. You may find some of this helpful, so we strongly recommend you listen to it. You’ll come away with a clearer understanding of how easily information can be manipulated in social media. In the podcast, How Does Bias Shape Our Perceptions About Science? climate scientists, J. Marshall Shepherd dives into three key elements that shape bias and perception:
- Confirmation bias: we seek information that confirms what we already believe
- Dunning/Kruger effect: people think they know more than they do or underestimate what they don’t know
- Cognitive dissonance: refers to a situation where someone’s behavior conflicts with their beliefs or attitudes. For example, when people smoke even though they know it’s pretty bad for them, they experience cognitive dissonance.
The next discussion by author Andreas Ekstrom focuses on truth versus popularity and how Google results for any given question search may list popular answers vs. correct answers, which leads people to believe the similar popular view vs. the actual truth. As one of the authors in the podcast puts it, science is not a belief system. We totally agree. Outcomes and results are either proven, or not, and there are rigorous methods to do so. There is no wiggle room here!
So, I invite you to read the conclusions of the study from the National Academy of Science and listen to experts talk about bias and perception. This is not only a fascinating subject but It might help next time we seek information and choose to spread it, or not, or at the very least, question it.
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