From Medium:
Health misinformation plagues the internet, and it isn’t only anti-vaxxers who buy into it. From influencers peddling useless supplements to fashion publications extolling the virtues of CBD oil face masks, misinformation — while often not malicious — touches most of us. At best, it can waste time and money. At worst, it puts people’s lives at risk.
The question of how best to battle this misinformation, if at all, is a vexing one within the medical community. What responsibility do doctors and other medical professionals have in fighting pseudoscience, particularly online? Some believe doctors should essentially be seen and not heard. A growing contingent of the medical community, however, is choosing to voice their frustration and correct the record on social media. But this comes with some risk, as confronting conspiracy theorists and alternative health moguls can be exhausting and even dangerous.
These medical professionals — doctors, nurses, even health policy lawyers — often differ in their methods, but for the most part they share one goal: to battle the health misinformation that infiltrates every corner of the internet. And while anti-vaxxers, who cluster in private Facebook groups and other closed communities like fervent supporters of some new church, may be beyond the reach of even the savviest doctor online, the rest of us — from those who may have questions about new dermatological treatments to those who aren’t entirely convinced one way or another about vaccines — could stand to benefit from the wisdom of the medical professionals who dare wade into social media’s treacherous waters.
Austin Chiang, a gastroenterologist based in Philadelphia, is the president of the Association for Healthcare Social Media (AHSM), a new nonprofit organization whose mission is to educate doctors on proper social media use and advocate for it as a crucial tool in the public health toolbox.
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Patients are getting their medical information from social media and Google — everywhere “except for the clinic visit that they have with us for 30 minutes at a time,” Chiang says. “With every single field out there, there’s something that is misinterpreted or misconstrued by the general public… We want to meet the patient where they are.” Chiang points to the existence and belief in colonic cleanses and detox teas as two issues that plague his own specialty, along with the most commonly known medical misinformation issue, anti-vaxxers.
Doctors need to consider their digital bedside manner as they approach all of this, but there’s a problem. Medical professionals, says Chiang, aren’t taught how to communicate online in an engaging and accessible manner, while the communications teams employed by hospitals and doctor’s offices don’t possess the same medical expertise as the doctors and nurses themselves. “If we aren’t engaged with online discussion, then the conversation is dominated by other people, and who knows where they’re getting their information from,” he says. “There are plenty of docs and nurses online these days, but relatively speaking, compared to the number of health professionals we have out there it’s still a very small minority.”
Link to the rest at Medium
PG wonders if there are any other groups of professionals of whatever profession who are undertaking this sort of task, to battle blatant misinformation online. He is unaware of any group of lawyers who do so, although there are quite a few trustworthy sites that provide reliable legal information on various topics.
The lack of basic science education mentioned above is a part of the problem, but the inconsistent information from places like the Centers for Disease Control, FDA, and others doesn’t help. The feds say one thing for years, then change without explaining why. Do that often enough, and soon people doubt everything and go looking for “the truth.” That truth could be from The Johns Hopkins, or Mayo Clinic, or Seña Martina the local curandera, or the internet.
I spent many long hours researching various medical issues during my mom’s last years. I even found the smoking gun about a medication allergy she had that her cardiologist insisted didn’t exist with that medication. I also wiped the smirk off his face when I told him it was from the John Hopkins medical school site, not a junk site. That was eight years ago. I had to do some research on my own medical problem recently. Every genuine medical site I tried to go into not only had a paywall, but I would need to prove I was a medical doctor connected to a hospital or teaching school to even pay for the info. And doctors complain about regular people getting bad info off the internet. Sheesh!
Paywalls! That’s a key point right there. I’ve been able to research my own strange condition because the information is free. I can even cross reference journals from other countries.
I know by experience that dentists don’t have much experience with my condition, but oral surgeons do. So my standard protocol when I get a new dentist is to educate them about the “shadows” on my X-rays that they all fear is cancer. An oral surgeon just takes one look at the X-ray, and knows I’m good. When I picked my newest dentist, I asked ahead of time if anyone on staff had the relevant background to understand my case.
One dentist did, and he made intelligent comments when I explained why an oral surgeon needed to be involved in his plan to give me a dental implant. He, in turn, was impressed by how clearly I explained the situation. I think my using the word “idiopathic” really moved him. Idiopathic is doctorese for “damned if I know what causes this.” I like that they have a word for that situation; it suggests a certain level of humility on their part.
I agree it’s important to be an educated patient. And always be assertive about picking physicians who are respectful, know how to communicate, and best of all, are willing to do their own research.
Your point about the paywall problem is important. Addressing that issue alone could do a vast world of good.
Truth to tell, I don’t trust doctors. Most of them just want to push the latest medications on you, because they all get the cut from the pharma companies. Internet doesn’t always give you the right information, but at least it gives you alternatives to pharmaceuticals. I think we should try those alternatives sometimes and see if they help. There is usually a range of options, and one of them might be useful in your particular case.
Truth to tell, I don’t trust doctors. Most of them just want to push the latest medications on you, because they all get the cut from the pharma companies.
How does that work? Do drug companies send checks to doctors? Wire transfers? Cash?
Depending on just what you are trying to help.
For instance, DO NOT try to take care of a bite from a rabid bat by taking vitamin C.
By the time you know it isn’t helping, well…
The problem has been building up for a long time. I’m not surprised at all this is such a problem.
1. The news media has largely advocated its role of protecting the public in favor of tabloid journalism. If a new study comes out, they produce a sensationalized headline. They don’t check the origins of the study to see who paid for it–many studies are paid for by corporations who want a certain result. No one checks the background of the expert in the story to see if he’s being influenced by the corporations. No one asks another expert with a dissenting opinion what he thinks.
Instead, they ramp up the fear! They make people afraid and further confuse the issues of food and health.
2. There was no alternate explanation. Autism is on the rise. Doctors said vaccines were safe and weren’t causing it, but they did not explain why autism is on the rise. They did not give parents any tools to work with. If they had said, “Start with cutting processed food,” that would have given them a tool.
3. Doctors are specializing so much that you end up going to to multiple experts for one problem. That feeds on creating confusing information. Doctor A said, Do X, Doctor B says Do Y–and they contradict each other!
I do my own research. I had to. I was spending six months out of the year nonfunctional because of severe allergies and a 6-month long colds. I was pretty much told to take cough medicine and sent on my way. No one offered me any tools other than some medication to suppress the symptoms. I first looked at the Vitamin Bible (written by a doctor and essentially a dictionary) and figured out some things to try. Then I ran across another book by a doctor in functional medicine that quoted many studies, took the time explain both sides…and I went off processed foods, sugar, gluten, and dairy.
It was the first time in nearly twenty years I hadn’t spent six months of year sick. Not only that, if I get any gluten, I know it right away. My primary care doctor rolled her eyes at the gluten free as a trend.
If the doctors do not provide tools to help people fix problems, then people are going to seek it elsewhere. Unfortunately, critical thinking is no longer taught in colleges, so they’re looking for the emotional side, not checking the credibility…
Your points are contributors to the problem, agreed.
Point 4) People really, truly don’t grasp the value of vaccines. They just don’t get why it was so wonderful that polio and whooping cough had a blissful period where they were written about in history books, and not newspapers. I liked not having the slightest idea what most of those diseases were that were listed on my immunization record. It’s infuriating that those diseases have made a comeback.
It would help if people had simple conversations with their grandparents about just how many children the grandparents actually had. How many people know they had aunts and uncles whom they never met, because a given vaccine didn’t exist to prevent their deaths?
Point 5) A lot of people really don’t get how viruses work to begin with, so by extension they don’t get how vaccines work. That can be laid at the feet of a shoddy K-12 education, which far too many people endure.
But media and scientists should be more helpful at remedying this, and you’re right that they haven’t been. I remember when AIDS was the big panic, and how enlightening it was when a science program aired that explained that AIDS is a “type 4” virus,** which requires an exchange of bodily fluids. You weren’t in danger of catching it by simply by being in the same room as a patient. It reinforced what my science teacher said, and the best part was that the program was made for a mass audience.
Instead, I know people who are convinced that cures for viruses actually exist, but are secretly withheld. When, apparently, no virus was ever cured; vaccines have simply been the best tool to fight against them. The catch is that they only work on a given strain, and a virus will mutate. The strain factor gets twisted into claims that the doctors are lying, or don’t know what they’re talking about.
Your point 3 reminds me of when my brother had a brain tumor, back when we were kids. My parents were very impressed that each specialist involved in his case seemed to be operating on more of an assembly line. One specialist would hand off my brother to another specialist, who would hand off to another. They were all ultimately working together, so none of the information ever got confused.
I could see how that assembly line process could easily go wrong when specialists aren’t working together. Add to this the propensity for people, including doctors, to speak outside their lane, and it’s a perfect storm. And of course, even doctors may be unwittingly relying on shoddy research, which gets twisted into them being psychotic enough to deliberately try and kill their patients. That’s the part that’s surreal to me, the assumption that by default, doctors are all afflicted with the Munchausen by Proxy Syndrome.
**Specifically, the enlightening part was that as there are different types of viruses, and AIDS belonged to the group that is relatively less dangerous. Obviously, for fictional purposes, virus types 1 – 3 are the most terrifying, especially if their effects were like AIDS or ebola.
PG wonders if there are any other groups of professionals of whatever profession who are undertaking this sort of task, to battle blatant misinformation online.
I only see that sort of thing happen in a fiction context, where cops / lawyers / doctors break down what’s real and what isn’t in fiction. On YouTube right now, Wired magazine has a segment where a CIA woman critiques the disguises used in different spy movies.
She explained that a “Mission: Impossible” movie where Tom Cruise poses as a priest is wrong, as the CIA never poses as clergy. Or as journalists, or Peace Corps people, simply because the genuine articles are too vulnerable to retaliation. And Jason Bourne would not have a box full of fake passports. She had an amusing line about Ben Affleck playing her husband in “Argo.” And also, she insists, only the Russians do the honeypot thing. The comments section is amusing.
But as for anti-vaxxers and snake oil buyers–I know people like this, and at the heart of it they truly seem to think that doctors are just not people. They’re dolls whose “switch” is set to evil. The doctors want you to get sick, and stay sick, so they can make more money off of you. As if there was only a fixed number of people in the world, so there’s only a limited pool of patients to work with. Gotta keep the existing pool sick, or you’ll run out. Very surreal.
I’ve wondered, if spy movies give people ideas about how spies work, and cop movies give people ideas about how cops work — often wrong ideas, but work with me — what would happen if Robin Cook, Tess Gerritsen and so on wrote conspiracy novels where the anti-vaxxers were trying to soften us up for a horrible plague? Fight fire with fire!
Well, there’s a few university professors who talk about and pine for a “Great culling”, a pandemic that will reduce human population numbers to “sustainable” levels.
There’s also at least one book series about a tailored virus designed to drastically reduce humanity to a “manageable” level of pre-vaccinated and naturally immunes. (THE LAST SHIP TV show used the latter as a source of conflict one season.)
There is also an active crackpot theory along those lines. Check out THE GREAT CULLING ONLINE. (Luddites, luddites, nothing but luddites.)
So your idea of some of the anti-vaccine crowd having ulterior motives is quite credible both as fact and fiction.
This one is newer than the ones I remembered:
https://www.nytimes.com/2018/12/17/opinion/human-extinction-climate-change.html
A bit “milder”, too. The older ones I found online don’t just speculate, they promote the idea.
Probably would make a good story where some crackpot runs with this ivory tower idea. If it hasn’t been done outside the BLACK TIDE RISING SERIES, which isn’t quite a thriller series.
Believable premise? Check! Those people who think of humans as a “cancer on the Earth” have always annoyed me at best, but they would make for such creepy villains in fiction. If humans need to be culled so badly, why aren’t these cranks culling themselves? Either they’re hypocrites … or they may be sticking around to make sure they can take the rest of us out alongside them. I joked to a copy editor that such a faction was behind the “Build the Death Star” petition.
“We’re stuck on Earth right now. What kind of person wants us to build a planet-destroying weapon when we don’t even have a backup planet? Think about it.”
I would love the idea of an Oliver Stone “JFK”-type conspiracy story about the anti-vaxxers. I never got around to seeing the “Last Ship; so I’ll have to find it on a streaming service. I believe Black Tide Rising is on my to-buy-when-I-finish-my-projects list.
BTR is a fun series if you enjoy combat SF/thrillers.
Some parts struck me as somewhat tongue in cheek but since Ringo likes to crowd the line and occasionally erase it…
I would also enjoy a good technothriller about chasing down a culler. It gets boring with all the spies, politicians, evil corporations, and euro-trash. Something different would be fun. Even mre fun would be protagonist who isn’t terribly competent… 🙂
For those who don’t know – that is the “Black Tide Rising” series…