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Fueling Distrust in Science and Medicine

There have been some interesting reactions to a couple of recent articles regarding misinformation and distrust, authored by Professor Timothy Caulfield here (Pseudoscience and Covid-19 ...) and here (now more than ever we must fight misinformation).

All in all, I think the articles are fairly well written and highlight some reasons for concern regarding health and healthcare claims. In the articles he acknowledges that there are issues with Conventional Medicine, which contributes to distrust; he also acknowledges that these need to be addressed -- "this includes addressing the issues that give the public legitimate reasons to question academic research... academic institutions & funding bodies must act to put their own house in order by promoting ethics and integrity.”

Colleagues rushed to applaud and share the posts with their followers on social media. Their support of this messaging seems to stem from their frustration with charlatans – “but what he's really highlighting is those that exploit that mistrust, filling the epistemiologic vacuum for their own personal gains and agendas, a point that deserves greater attention, especially now.”

It is very understandable why HCPs would resonate with a great deal of the messaging. There are charlatans. There are people making lots of money off of people trying to improve their health. Patients are often the victims. And the practitioners are pissed off. Many of these tactics should be highlighted and called out. Properly. If this is where Professor Caulfield focused his efforts, there would be virtually no pushback. But that's where the bubble starts to burst.

Professor Caulfield has developed a broad brush approach to his debunking style. He doesn't just call out the charlatans and their particular tactics, he calls out all of Alternative Medicine. He doesn't just call out Gwyneth and Goop, he calls out the $4.2 trillion "wellness industrial complex". He doesn't just call out his disbelief in homeopathy, he calls out all of naturopathy. He doesn't call out his disbelief in reiki, he calls out all of Integrative Medicine. He calls out universities and institutions that are including an Integrative Medicine curriculum in their medical school training – “First, we must stop tolerating and legitimizing health pseudoscience, especially at universities and health-care institutions.

Professor Caulfield uses divisive words like “pseudoscience” and “woo” to lump almost everything that is “not Conventional Medicine” into the same category. And he demonizes it. He uses phrases like “Evidence Based Medicine” and “Science Based Medicine” and “RCTs” (Randomized Control Trials) to describe the holy grail of medicine. It’s all about the science. Then he subtly suggests that some of the distrust in science and Conventional Medicine has been earned. By others. By OTHER PEOPLE. He’s not looking in the mirror yet. He occasionally points to bad science, conflicts of interest that OTHERS are engaging in, suggesting that their actions are fueling distrust. He’s right, they are fueling distrust.

Professor Caulfield and many others have become the heroes of the “misinformation movement.” They are regularly on social media debunking sketchy claims by those in “alternative medicine”, “integrative medicine”, “functional medicine”, etc. Every once in a while a sketchy claim in “conventional medicine” will be challenged. There is a posse. They are applauded by many in Conventional Medicine, and in fairness, they should be to a degree. When this group writes an article or target a questionable claim, people are listening. The twitter storm ensues. Other twitter HCP accounts join in and fan the flames further. In their mind, they are probably targeting the charlatans, the hated accounts, the evil-doers. In their minds, they are doing a good thing. They are helping patients. I understand this. I support those that are calling out fake cures and other nonsense. But I do not support doing so with a broad brush. I do not support throwing out the baby with the bathwater.

When it goes too far

In the Misinformation Movement, there are Heroes and there are Villains. An environment of “us vs them” has been created. Good vs Evil. And the good must triumph.

What do some patients see when they read Professor Caulfield's posts? What do people who offer or patients who have had their health improve utilizing some of the approaches Professor Caulfield negatively labels as “pseudoscience” see? What do other practitioners see? What do people trying to deal with overdiagnosis and overtreatment issues see?

“Rigid science/anti-science messaging and poor choices in battles are part to blame for distrust. Instead of decrying "boost immune system" terminology, try "smoking and poor diet reduces your body's ability to fight disease; vitamin D, dark green leafies, berries etc. improve it"”

“I'm all for debunking bunk. If it's bunk. If Timothy Caulfield & team have been funded to "counter COVID-19 claptrap", I hope it's not used to target institutions offering IM programs. Enough already.” {Author’s note: I made this point.}

“The dude is literally calling upon his familiars to lobby for exclusion of everything outside conventional medicine from academia and other health institutions. He's an extremist waging a (pretty ham-fisted) campaign.”

“That's a really important point. Ppl like @CaulfieldTim are in fact damaging to the medical profession as a whole. Fortunately not all doctors share his wildly fundamentalist views but are forced to share in the fallout from them.”

What these people see is a different kind of misinformation being spread. And distrust grows. They see beneficial treatments being targeted as pseudoscience and woo. More misinformation. More distrust. They see trusted doctors and health care professionals spreading the misinformation. More distrust. As more misinformation is spread by the “Heroes of the Misinformation Movement”, they see propaganda. They see disinformation. More distrust. There are consequences. People lose their jobs. People lose speaking engagements. People's livelihoods are impacted. Patients are targeted on social media for sharing their stories. It is often vile. More Us vs Them. More distrust.

Professor Caulfield and others share their hate mail like a badge of honour. They act like it's coming from a bunch of lunatics. Some of it is, much of it is not. Much of it is coming from patients. Patients that are angry at the insensitivity. Patients that are angry that they were failed by Conventional Medicine. Patients that are angry that their health choices are being targeted. More Us vs Them. More distrust.

Inadvertent Support

I’m reminded of a fairly famous quote attributed to Albert Einstein:

“The world will not be destroyed by those who do evil, but by those who watch them without doing anything.” 

As doctors and patients see questionable claims on social media, they challenge the claims and tag in the Heroes to get their assessments and debunk the questionable claims. For the most part, this is a good thing. But rarely do these people call out the broad brush discrediting, the other misinformation that is being spread by their Heroes. They are slow to challenge the Heroes. They remain silent. They watch without doing anything. It’s hard to challenge Heroes that for the most part are doing a good thing. One may not agree with everything the Heroes say, but most of what they say is right. Those that question the Heroes often get targeted by others, and choose not to say anything. Those who are watching question the integrity of those who sit idly by and do nothing. More Us vs Them. More distrust.

It may be time to look in the mirror. And for those that are parroting the Heroes' messaging, now might be a good time to also look in the mirror. Or better yet, hold the mirror up for them. The broad brush approach to discrediting “all things non-Conventional in medicine”, compounded by the large followings, retweets and comments are arguably the root cause of the distrust of science and Conventional Medicine. At the very least it is fanning the flames.

Patients Want Support

Patients are frustrated with Conventional Medicine. Chronic disease patients are not getting answers to what is causing their symptoms and conditions. And they're looking for answers. They have been drawn to social media to share their stories. They are finding communities of patients with similar stories. Many are finding answers. They don't want to be targeted by charlatans. They are grateful when harmful practices are debunked, even though they had probably already debunked them in their own minds anyway. But they don't want their choices targeted on social media. They want no part of the Us vs Them. They want their health to improve. And they want to help others. The broad brush targeting of all things non-Conventional is not helping. They don't want to distrust, rather they want to trust.

"If you are a doctor and you are angrier about alternative medicine than you are about the millions of people who seek alternatives because the mainstream system does not research, cannot effectively treat, or worse, routinely gaslights these patients, then you have work to do. Most people want care that is safe, effective, and based on science. They want care that is accessible and affordable. ... So what do some do instead? They Google their symptoms, surf the internet for supplements, seek out faith healers, and if they have the money, bounce around from alternative practice to alternative practice. All the things MDs laugh at or debunk. These are, in economic terms, perfectly RATIONAL responses to what is a major MARKET FAILURE in medicine and medical research. But why study that problem when you can smugly debunk? 

I sometimes wonder if debunking isn't its own form of coping mechanism. Medicine fails patients. Patients self-experiment and desperately seek answers. "Skeptics" debunk and deride. Round and round it goes, with very little conversation about root causes. Also "alternative medicine" comprises thousands of different treatments. Some of it does in fact work. Some of it is rooted in science. Some of it is quackery. The same can be said of 'mainstream medicine.'"

The Redirect

This post will be targeted by some as a “hit piece”. It is not. It is simply a refusal to remain silent. It is a refusal to stand by and watch as distrust in doctors and the medical profession grows. It is a refusal to stand by as trust in the doctor-patient relationship is eroded. And it’s directed at the Followers.

It is great that the Heroes are debunking false claims made by charlatans. When they do so they should be applauded. But when they go too far and spread their own misinformation, now is not the time to watch them without doing anything. It is the Heroes that are sowing distrust. It is the Heroes that are fanning the flames. And it is the Followers and the Patients who stand to lose in the battle.

The Author is a “Bad Player”

I’d be remiss if I didn’t foresee another outcome of this post. I, the author, will be applauded by some and jeered by others. I will be accused of “whataboutism”. For many years, I have not been sitting idly by. I have been calling out the sweeping generalizations and broad brush approach that are being used by the Heroes and often not challenged by their Followers. And that makes me a “bad player”. I have been blocked by most of the Heroes. I have been blocked by many of the Followers. And I’m okay with that. I cannot watch and do nothing. I will not watch and do nothing.

As another healthcare practitioner noted: “sweeping generalizations are often unhelpful. the question of course is how to agree on how to decide what should be integrated vs. excluded. based on prior discussions, that seems to represent something of an impasse.”

My response: “This is the critical point of discussion. And it's very sad that it's at an impasse. It's even sadder that many are piling on instead of trying to break the impasse.”

If we’re going to remove the distrust from medicine and science, we need to break the impasse. Fighting with each other won’t do it. Fanning the flames won’t do it. We need to start with a very large fire extinguisher, then the interested parties need to come to the table. Together.

But How?

One idea: Somewhere, somehow, there needs to be a collaboration, possibly an “adversarial collaboration” where parties come together to hammer out agree upon some sort of joint effort to establish the framework for targeting and debunking real misinformation. All of it. Parties seen as foes would work together and sign their names to the joint effort. They would affirm their goals of breaking the Us vs Them impasse, and of working together to ease distrust and restore the doctor-patient relationship.

There may be a lot of bad out there, but there is also a lot of good. If we need to deal with root cause, then let's deal with root causes. In all areas of medicine and healthcare. Delicately. With a very thin paintbrush. Focusing on the actual problems. In doing so, the solutions will probably become obvious. And the distrust will slowly evaporate.

KenJaques 30.04.2020 0 491
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30.04.2020 (32 days ago)
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